Supporting Traumatic Brain Injury Patients’ Family Members · Practical support involved...

Publications of the University of Eastern Finland

Dissertations in Health Sciences

isbn 978-952-61-1316-6

Publications of the University of Eastern FinlandDissertations in Health Sciences

The study examined what

supporting traumatic brain injury

(TBI) patients’ family members

entails and how often nursing staff

provide support for TBI patients’

family members. Additionally,

the aim was to find out what kind

of nursing competence (basic/

advanced) is needed to support

TBI patients’ family members on

neurosurgical wards. TBI in one

individual affects the health of the

whole family.

dissertatio

ns | 205 | K

irsi C

oco

| Supporting Traum

atic Brain Injury P

atients’ Fam

ily Mem

bers

Kirsi CocoSupporting Traumatic Brain

Injury Patients’ Family Members

Neurosurgical Nurses’ Evaluations

Kirsi Coco

Supporting Traumatic Brain Injury Patients’ Family MembersNeurosurgical Nurses’ Evaluations

Supporting Traumatic Brain Injury

Patients’ Family Members


KIRSI COCO

Supporting Traumatic Brain Injury

Patients’ Family Members


To be presented by permission of the Faculty of Health Sciences, University of Eastern Finland for

public examination in Auditorium ML3, Medistudia building, Kuopio, on Friday, January 24th 2014,

at 12 noon



205

Department of Nursing Science, Faculty of Health Sciences

University of Eastern Finland

Kuopio

2013

JuvenesPrint

Tampere, 2013

Series Editors:

Professor Veli-Matti Kosma, M.D., Ph.D.

Institute of Clinical Medicine, Pathology

Faculty of Health Sciences

Professor Hannele Turunen, Ph.D.

Department of Nursing Science


Professor Olli Gröhn, Ph.D.

A.I. Virtanen Institute for Molecular Sciences


Professor Kai Kaarniranta, M.D., Ph.D.

Institute of Clinical Medicine, Ophthalmology


Lecturer Veli-Pekka Ranta, Ph.D. (pharmacy)

School of Pharmacy


Distributor:


Kuopio Campus Library

P.O.Box 1627

FI-70211 Kuopio, Finland

http://www.uef.fi/kirjasto

ISBN: 978-952-61-1316-6 (nid.)

ISBN: 978-952-61-1317-3 (PDF)

ISSN 1798-5706 (print)

ISSN: 1798-5714 (PDF)

ISSN-L: 1798-5706

Author’s address: Department of Nursing Science


KUOPIO

FINLAND

Supervisors: Professor Hannele Turunen, Ph.D.



Kuopio University Hospital

KUOPIO

FINLAND

Professor Kerttu Tossavainen, Ph.D.



KUOPIO

FINLAND

Professor Juha E. Jääskeläinen, Ph.D., MD.

Department of NeuroCenter

Kuopio University Hospital

KUOPIO

FINLAND

Reviewers: Professor Siv Söderberg, Professor, Ph.D., RNT

Division of Nursing

Department of Health Science

Luleå University of Technology

LULEÅ

SWEDEN

Professor Sofie Verhaeghe, Ph.D.

Nursing Science

University of Gent

GENT

BELGIUM

Opponent: Docent Meeri Koivula, Ph.D.


University of Tampere

TAMPERE

FINLAND

V

Coco, Kirsi

Supporting Traumatic Brain Injury Patients’ Family Members, Neurosurgical Nurses’ Evaluations

University of Eastern Finland, Faculty of Health Sciences

Publications of the University of Eastern Finland. Dissertations in Health Sciences 205. 2013. 40 p.

ISBN: 978-952-61-1316-6 (nid.)

ISBN: 978-952-61-1317-3 (PDF)

ISSN: 1798-5706 (print)

ISSN: 1798-5714 (PDF)

ISSN-L: 1798-5706

ABSTRACT

The purpose of this study was to examine what supporting traumatic brain injury (TBI) patients’ family

members entails and how often nursing staff provide support for TBI patients’ family members. Additionally,

the aim was to find out what kind of nursing competence (basic/advanced) is needed to support TBI patients’

family members on neurosurgical wards. TBI in one individual affects the health of the whole family.

Studying the support provided by nursing staff is important because such support is crucial for the family

members of a TBI patient during the acute phase of treatment.

In the first phase of the study (2008-2010) a systematic literature review was carried out to find out how

previous research during the years 2004-2010 defines the supporting of TBI patients’ family members. The

data were analysed using content analysis. In the second phase of the study (2010-2012) the questionnaire

formed for this study was used to collect nursing staff’s perceptions about what kind of competence

(basic/advanced) is needed and how often it is needed to support TBI patients’ family members. The sample

was all nurses (N = 172) who worked on neurosurgical wards in all five university hospitals in Finland. The

response rate was 67% (N = 115). Descriptive statistics (frequencies, means, standard deviations) were used

and an explorative factor analysis using the principal axis method with Varimax rotation was carried out.

One-way ANOVA, two-way ANOVA and MANOVA were used to examine the relationships between the

background variables and the respondents’ evaluations of how often they gave support to TBI patients’ family

members.

Based on the systematic literature review, informational support related to: TBI patients’ symptoms, TBI

patients’ treatment, quality of information and TBI patients’ prognosis. Emotional support related to taking

TBI patients’ family members’ emotions into account, caring and listening, and respecting family members.

Practical support involved supporting family members in decision-making, promoting welfare, supporting

family members in participating in TBI patients’ care, and co-operating with family members and providing

guidance to counselling services. The nursing staff evaluated that overall, the nurses often provided support

for TBI patients’ families. They often told them about treatment and about their own responsibilities to family

members. Older and experienced nursing staff more often took into consideration issues relating to secondary

injuries. Most nurses considered information about prevention of secondary injuries as advanced competence.

Emotional support was provided most often of the support’s dimensions. All registered nurses and staff

members with long work experience (21 years or more) on a neurosurgical ward reported that they took

family members’ feelings of anger and guilt into consideration slightly more often than other nursing staff

did, although most nurses considered these skills to represent basic competencies. Registered nurses

considered themselves most likely to take into account issues related to liaison with family members. The

nursing staff with long work experience (21 years or more) reported often discussing mood swings and other

TBI symptoms with family members.

In-service training on dealing with difficult emotions of traumatic brain injury patients’ family members

could help nurses to face these situations. Providing practical support for TBI patients’ family members

requires nurses to possess multidimensional practical competences relating to the symptoms caused by the

brain injury.

National Library of Medical Classification: WL 354; WY 160.5

Medical Subject Headings (MeSH):

Brain Injuries; Patients; Family; Nursing Staff; Social Support; (Professional Competence)

VII

Coco, Kirsi Traumaattisen aivovammapotilaan omaisten tukeminen, Neurokirurgisten hoitotyöntekijöiden arvioita

Itä-Suomen yliopisto, terveystieteiden tiedekunta

Publications of the University of Eastern Finland. Dissertations in Health Sciences 205. 2013. 40 s.

ISBN: 978-952-61-1316-6 (nid.)

ISBN: 978-952-61-1317-3 (PDF)

ISSN: 1798-5706 (print)

ISSN: 1798-5714 (PDF)

ISSN-L: 1798-5706

TIIVISTELMÄ

Tutkimuksen tarkoituksena oli selvittää, mitä on traumaattisen aivovammapotilaiden (traumatic brain injury,

TBI) potilaiden omaisten tukeminen ja kuinka usein hoitotyöntekijät tukevat TBI potilaiden omaisia sekä

millaista hoitotyön osaamista (perus/ erikois) tarvitaan neurokirurgisilla vuodeosastoilla. Lisäksi tarkasteltiin

taustamuuttujien yhteyttä siihen, kuinka usein hoitotyöntekijät tukivat TBI potilaiden omaisia sekä olivatko

taustamuuttujat yhteydessä siihen, millaista osaamista he arvioivat omaisten tukemisen

edellyttävän.Traumaattinen aivovamma vaikuttaa sekä potilaaseen että hänen perheeseensä, siksi omaisten

hoitotyöntekijöiltä saama tuki on merkittävää jo TBI potilaan hoidon akuuttivaiheessa.

Tutkimuksen ensimmäisessä vaiheessa (2008–2010) tehtiin systemaattinen kirjallisuuskatsaus vuosilta

2004–2010 TBI potilaan omaisten tukemisesta. Ensimmäisen vaiheen systemaattisen kirjallisuuskatsauksen

tulokset analysoitiin sisällön analyysilla. Tutkimuksen toisessa vaiheessa (2010–2012) kyselyllä

neurokirurgisille hoitotyöntekijöille selvitettiin, miten usein he tukivat TBI potilaan omaisia ja millaista

osaamista omaisten tukeminen edellyttää. Kyselylomake lähetettiin kaikille neurokirurgisilla vuodeosastoilla

työskenteleville hoitotyöntekijöille (N = 172) Suomessa. Vastausprosentti oli 67 % (n = 115). Toisen vaiheen

kyselytutkimuksen jakaumat (frekvenssit, keskiarvot ja keskihajonnat) tutkittiin ja selvitettiin kuinka usein

hoitotyöntekijät arvioivat tukevansa tiedollisesti, emotionaalisesti ja käytännöllisesti traumaattisen

aivovamman potilaiden omaisia sekä sitä miten taustamuuttujat olivat yhteydessä annettuun tukeen.

Aineistoa käsiteltiin eksploratiivisella faktorianalyysilla principal axis menetelmällä ja Varimax rotaatiolla.

Lisäksi tutkittiin taustamuuttujien yhteyttä siihen, miten usein hoitotyöntekijät arvioivat tukevansa TBI

potilaan omaisia, One way Anovalla, Two way Anovalla ja Manovalla sekä lineaarisella regressioanalyysilla.

Systemaattisen kirjallisuuskatsauksen tuloksena tiedollinen tuki oli tietoa TBI potilaiden oireista, TBI

potilaiden hoidosta, tiedon laadusta ja tieto TBI potilaiden ennusteesta. Emotionaalinen tuki sisälsi TBI

potilaiden omaisten tunteiden huomioon ottamisen, välittämisen ja kuuntelun sekä omaisten

kunnioittamisen. Käytännöllinen tuki tarkoitti omaisten päätöksenteon tukemista, hyvinvoinnin edistämistä,

omaisten tukemista osallistumaan TBI potilaan hoitoon, sekä yhteistyötä omaisten kanssa ja ohjausta

tukipalveluihin. Kokonaisuutena hoitotyöntekijät arvioivat tukevansa TBI potilaan omaisia usein.

Hoitotyöntekijät kertoivat omaisilla usein oman vastuualueen mukaisesta hoidosta sen sijaan

sekundaarivaurioiden ehkäisystä he arvioivat kertovansa harvoin. Iällä ja työkokemuksella oli yhteys siihen,

miten usein he antoivat omaisilla tietoa sekundaarivaurioiden ehkäisystä. Useimmat hoitotyöntekijät olivat

sitä mieltä, että sekundaarivaurioista kertominen edellyttää erikoisosaamista. Sairaanhoitajat ja

hoitotyöntekijät, joilla oli pitkä työkokemus (21 vuotta tai enemmän) neurokirurgisella vuodeosastolla

arvioivat, että he ottivat huomioon omaisten tunteet, kuten vihan ja syyllisyyden hieman useammin kuin

muut hoitotyöntekijät. Sairaanhoitajat verrattuna muihin ammattiryhmiin arvioivat olevansa omaisten kanssa

yhteistyössä muita ammattiryhmiä useammin. Hoitotyöntekijät, joilla oli pitkä työkokemus (21 vuotta tai

enemmän) arvioivat ohjaavansa usein TBI potilaan omaisia potilaan mielialavaihteluista ja muista oireista.

Täydennyskoulutus TBI potilaan omaisten vaikeiden tunteiden kohtaamisessa voisi auttaa

hoitotyöntekijöitä tukemaan useammin TBI potilaan omaisia. TBI potilaan omaisten käytännöllinen

tukeminen edellyttää hoitotyöntekijältä monipuolista osaamista, kun potilaalla on TBI aiheuttamia oireita.

Yleinen suomalainen asiasanasto (YSA): aivovammat; potilaat; omaiset; perheenjäsenet; hoitohenkilöstö;

tukimuodot; psykososiaalinen tuki; osaaminen

Acknowledgements

This study focuses on neurosurgical nursing, traumatic brain injury patients and their family members. The study was carried out at the Department of Nursing Science, University of Eastern Finland. Many people have supported and encouraged me during the research process. I warmly thank all those who I cannot personally acknowledge here.

My greatest gratitude goes to my principal supervisor, Professor Hannele Turunen, PhD, for her excellent and inspirational guidance during this process. Without her support this could not have been possible. My warmest thanks go to Professor Kerttu Tossavainen, PhD, for all those critical comments and for her very energetic positive encouragement, as I always felt very motivated and strong to continue the project after receiving her comments. I owe my sincere gratitude to Professor Juha E Jääskeläinen, PhD, for all valuable and innovative comments I received from him during the process of the study.

I warmly wish to express my gratitude to Professor Siv Söderberg, PhD, and Professor Sofie Verhaeghe, PhD, who have previewed my thesis. Their comments were valuable, constructive and encouraging, and improved my thesis.

I also want to thank Docent Meeri Koivula, PhD for accepting the request to act as my opponent.

I owe my deep gratitude to Neurosurgeon Aki Laakso, PhD, Nurse Manager Marjaana Peittola, RN, Nursing Director Ritva Salmenperä, MSc, Licensed Vocational Nurse Kimmo Seppänen, Registered Nurse Marina Söderström, and Anesthetist Hanna Tuominen, PhD. I owe my gratitude to: Chairman, Professor Juha Hernesniemi, Neurosurgery of Helsinki University Hospital, Chairman, Professor John Koivukangas, Neurosurgery of Oulu University Hospital; Head, Docent Esa Kotilainen, Neurosurgery of Turku University Hospital; and Chairman, Professor Juha Öhman, Neurosurgery of Tampere University Hospital. I want to thank all the neurosurgical nursing staffs who participated in my study, and my special thanks goes to the contact persons who assisted me in the data collection.

I owe my kind regards to my former colleagues in the Neurosurgical Department HUS and especially to Marjo Juutilainen, RN and Jussi Laasola, RN. I shared a lot of laughs with you and you were always so sincerely glad when I succeeded with my studies.

I also owe my thanks to Hannu Isoaho, MA, and statistician Marja-Leena Hannila, MSc, who helped me with the statistical analysis. I’m very grateful to Anniina Moilanen, MSc, RN, Elisa Launonen, MA and Keith Kosola for their valuable help for revising the English text of the articles and thesis. I also express my thanks to information specialist Maarit Putous, MA.

I owe my sincere thanks to my colleagues Leena Lahti, Tuula Kokkola, Kaija Kocak, Eija Korhonen AND Tuula Niskanen for providing relaxing fellowship. I am grateful to Maarit Vanhapiha and also to former colleagues Aulikki Joensuu and Tarja Paakkinen for their genuine and encouraging interest in my thesis. I am grateful to Kaisa Aho, Rita Simola and Juha-Petri Niiranen for understanding and also permitting and trusting me to have varied responsibilities, which have motivated me to develop my professional skills during this project.

I warmly wish to express my gratitude to my colleagues Irja Alavuotunki, Päivi Nuutinen, Johan DeCock and Sofie Mulier in international cooperation. I also owe my sincere thanks to Marijke Rebry and Lea Pöllänen.

Maj-Lis Kärkkäinen, PhD, thank you for being my friend and a wise mentor, your support has been precious. Kristiina Helminen, PhD student, I thank you for sharing the path towards researchers’ identity by participating in different conferences with me. My deepest gratitude goes to you and Jouni for giving me the possibility to enjoy your hospitality and also to letting our families to be friends. Merja Jokelainen, PhD, thank you for accepting me as a peer reviewer in your study, I learned a lot with you.

My special thanks go to my dear friends. Ella Komulainen, I thank you for all those long walks and for sharing everyday life’s joys and demands and reminding me that there are also other important things in life. Minna Marjamäki-Kekki and Tero Kekki, thank you for your friendship and thank you Minna in particular for all positive encouragement during my MSc studies. Kaisa Kuhmola, I am grateful to have had a friend like you for such a long time. I also want to thank Ursula Johansson. Susanna Nyman, I owe you my gratitude for your friendship and for reminding me to always be gentler with myself.

I owe my warmest gratitude to my mother Ulla-Maija Tuominen, to my brother Jyry Tuominen, my-sister-in-law Leena Kuusisto and my aunt Terttu Sandholm who has always been very encouraging. I owe my deepest gratitude to my father Teemu Tuominen, who passed away during my thesis process. From him, I got my determination and the courage to make my dreams come true.

I want to thank my loving husband Carmelo for his infinite patience, love and understanding during these years. I owe my greatest love to my children, Maria, Giuseppe, Nicodemo and Rosaria who have always been the biggest and brightest light and the greatest gifts in my life. I also express my thanks to Juuso and Reetta, who are now part of our family.

This study was financially supported by the University of Eastern Finland and the Finnish Foundation of Nurse Education. I owe my gratitude to them for their support.

Vantaanlaakso, October 2013 Kirsi Coco

XI

List of the original publications

This dissertation is based on the following original publications:

I Coco K, Tossavainen K, Jääskeläinen JE and Turunen H. Support for traumatic

brain injury patients' family members in neurosurgical nursing: a systematic

review. Journal of Neuroscience Nursing 43:337−348, 2011.

II Coco K, Tossavainen K, Jääskeläinen JE and Turunen H. Providing informational

support to the families of TBI patients: a survey for nursing staff in Finland.

Journal of British Neuroscience Nursing 8:337−345, 2012/2013.

III Coco K, Tossavainen K, Jääskeläinen JE and Turunen H. The provision of

emotional support to the families of traumatic brain injury patients: perspectives

of Finnish nurses. Journal of Clinical Nursing 22:1467−76, 2013.

IV Coco K, Tossavainen K, Jääskeläinen JE and Turunen H. Finnish nurses’ views of

support provided to families about traumatic brain injury patients’ daily

activities and care. Journal of Nursing Education and Practice 3:112−123, 2013.

The publications were adapted with the permission of the copyright owners.

XIII

Contents

1 INTRODUCTION ........................................................................................................................... 1

2 SUPPORTING TBI PATIENTS’ FAMILY MEMBERS ............................................................ 4

2.1 DEFINITION, PREVALENCE, SYMPTOMS AND TREATMENT OF TBI ............................................................................ 4

2.2 COMPETENCE IN SUPPORTING TBI PATIENT’S FAMILY MEMBERS ............................................................................. 9

2.2.1 Supporting TBI patients’ family members ................................................................................................... 9

2.2.2 Competence in TBI patients’ nursing practice ........................................................................................... 10

2.2.3 Conclusion ...................................................................................................................................................... 12

3 PURPOSE OF THE STUDY, RESEARCH QUESTIONS AND DESIGN .......................... 14

4 DATA AND METHODS ............................................................................................................. 15

4.1 PHASE I: SYSTEMATIC REVIEW (PAPER I) ................................................................................................................ 15

4.2 PHASE II: SURVEY FOR NEUROSURGICAL NURSING STAFF (PAPERS II-IV) .............................................................. 16

5 RESULTS ........................................................................................................................................ 19

5.1 INFORMATIONAL SUPPORT IN SUPPORTING TBI PATIENTS’ FAMILY MEMBERS ...................................................... 19

5.2 EMOTIONAL SUPPORT IN SUPPORTING TBI PATIENTS’ FAMILY MEMBERS .............................................................. 21

5.3 PRACTICAL SUPPORT IN SUPPORTING TBI PATIENTS’ FAMILY MEMBERS................................................................ 22

5.4 SUMMARY OF THE RESULTS ...................................................................................................................................... 24

6 DISCUSSION ................................................................................................................................ 26

6.1 ETHICALITY OF THE STUDY ...................................................................................................................................... 26

6.2 RELIABILITY OF THE STUDY ...................................................................................................................................... 26

6.3 DISCUSSION .............................................................................................................................................................. 27

6.4 CONCLUSIONS AND RECOMMENDATIONS .............................................................................................................. 30

6.5 SUGGESTIONS FOR FURTHER RESEARCH .................................................................................................................. 31

7 REFERENCES

APPENDICES

XV

Abbreviations

TBI Traumatic Brain Injury

MMSE Mini-Mental State Examination

FM Family Member

VAS Visual Analog Scale

SD Standard Deviation

RAND36 Health Survey

GCS Glascow Coma Scale

PTA Post-Traumatic Amnesia

CT Computer Tomography

1 Introduction

In addition to broad basic knowledge, the nursing staff on neurosurgical wards needs special competence when providing comprehensive, up-to-date and safe care for patients with different levels and types of traumatic brain injury (TBI). Little research has been carried out regarding the basic and advanced competence needed to support the family members of TBI patients from the viewpoint of nursing staff (DiIorio et al. 2011).

In Finland it’s established that the elderly population is increasing and if services are to continue at the same level, it means that 80,000-120,000 new social and health-care workers will be needed by the year 2025. Otherwise the fact is that social and health care will struggle with the current lack of competent nurses. (Mäkitalo et al. 2010.)

The purpose of this study is to yield information about the competence needed by nursing staff to support family members of adult (>16 years) TBI patients. The study produces information about the contents of TBI patient nursing which can be utilized in, e.g., the orientation of new staff members. In addition, the results provide information for developing the quality of nursing and improving patients’ safety as well as bringing neurosurgical nursing staff’s needs for further training to the attention of nursing managers and training organizations.

The term “traumatic brain injury” (TBI) means a trauma affecting the head, often resulting in a loss of consciousness of any length of time, memory disturbances, and changes in the ability to function as well as neurological symptoms pointing to localized brain damage. In addition to weakened bodily functions, the patient often suffers from different sensomotoric, cognitive and emotional disturbances. (Öhman et al. 2008.) The patient’s symptoms cause suffering, fear and anxiety in the family members (Jumisko et al. 2005, 2009, Hawley & Joseph 2008, Calvete & deArroyabe 2012, Lefebvre & Levert 2012). Family members have informational needs during the different phases of the TBI patient’s therapeutic path – acute phase, subacute phase, convalence and rehabilitation – and the support provided by the nursing staff is meaningful and important in all these phases (Verhaeghe et al. 2005b, Lefebvre & Levert 2012).

All patients who are still unconscious on admission to hospital should initially be treated in the neurointensive care unit. For the first hours and days, the treatment is focused on maintaining the balance of the TBI patient’s central nervous and body systems (brain oxygenation and perfusion, intracranial pressure (ICP), electrolyte and fluid balance, temperature, etc.). Patients with severe TBI are at risk of suffering additional damage caused by intracranial and bodily events such as increased ICP, delayed intracranial haemorrhages, and perfusion deficits and brain ischaemia. The length of neurointensive care and overall neurosurgical hospital stay can usually be predicted by careful analysis of the condition on admission. (Öhman 2008, Olson et al. 2013.)

TBI patients constitute a notable patient group that increases with age but is still underdiagnosed in developed countries. There are some eight million TBI cases diagnosed globally each year. (Tagliaferri et al. 2006, Brain Trauma Foundation 2007, Koskinen & Alaranta 2008.) Koskinen and Alaranta (2008) estimated that in Finland some 21,000–31,000 people acquire TBI annually. There are some 100,000 people living with permanent symptoms after sequelae from brain injury in Finland. TBIs treated in hospitals result from traffic accidents, falling and violence. Half of all TBIs are acquired under the influence of alcohol. TBIs leading to death are most commonly caused by (a) traffic accidents among

2

the working age population or by (b) fall-related accidents among the elderly. Below 45 years of age TBIs occur more commonly in men and over 75 years in women. (Öhman et al. 2008.)

The guidance of a TBI patient’s family is an important part of the treatment as the changes in the patient’s behaviour and his or her emotional disturbances are particularly difficult to realize and cope with by the TBI patient (Calvete & deArroyabe 2012). Family members should learn ways to give feedback on the patient’s changed and difficult behavior. (Vanderploeg et al. 2007, Berry et al. 2012.) After suffering a TBI, the patient as a family member is not the same as he or she used to be, and as the TBI patient’s ability to function and behaviour change, so do their relationships (Wongvatunyu & Porter 2005). On the other hand, sometimes the changes triggered by the TBI can be positive from the family members’ viewpoint (Tenovuo 2010).

A few studies have previously examined the informational needs and coping of TBI patients’ family members during the acute phase in the neurointensive care unit and during the rehabilitation after the injury to their loved one (Verhaeghe 2005a, Jumisko et al. 2007, Rotondi et al. 2007, Lefebvre et al. 2008, Verhaeghe et al. 2010a, 2010b, Lefebvre & Levert 2012) as well as nursing staff’s experiences upon facing TBI patients’ family members (Lefebvre & Levert 2006, Yetman 2008, Roscigno et al. 2013). Rotondi (2007) and co-workers stated that family members need informational support concerning TBI and its consequences as well as emotional support to alleviate the stress and loneliness. Furthermore, family members need practical support to deal with financial matters and other daily problems (Calvete & deArroyabe 2012). Previous studies have been primarily qualitative, and the sample sizes in quantitative studies have been rather small to draw comprehensive conclusions.

In the present study, the literature searches were made for peer-reviewed publications in the CINAHL, Cochrane, CSA, ISI, Medic, PubMed and PsycINFO databases, using the search terms ”family”, ”relatives”, ”sibling”, ” next of kin”, ”significant other”, ”brain injury”, ”head trauma”, ”nurs*”, ”nurses” and their combinations for the years 2004-2010 and updated for 2011-2013.

In Finland, supporting family members have been studied in relation to several different patient groups: brain circulatory disturbances; coronary artery bypass surgery; multiple traumas; elderly patients in long-term institutional care; stoma surgery; and prostate cancer. Based on these studies, the support the family members receive from nurses includes being informed about the illness, the patient’s daily care, information on how family members can be involved in the patient’s care, guiding family members how to use alternative techniques, building a confidential rapport, encouragement, informational and emotional support through interaction as well as being supported in decision-making. (Nuutinen & Raatikainen 2005, Coco et al. 2007, Koivula et al. 2007, Nevalainen et al. 2007, Kaila 2009, Mattila et al. 2009, Harju et al. 2011, Liimatainen et al. 2012.)

Concepts essential to this study include the TBI patient, family members, support, and competence. TBI means structural and/or functional damage to the brain from external energy caused by, e.g., a fall or getting hit by an object. Except in very mild brain injury, TBI is accompanied by a loss of consciousness or at least a memory loss, and often by other symptoms indicating brain dysfunction (e.g., disorientation), and increasingly demonstration of brain damage, depending on the accuracy and methodology of neuroimaging. (Öhman et al. 2008, Falk 2012.) A family member means a person whom the patient has defined to be a part of the family and of whom the term “family member” is used (Åstedt-Kurki et al. 2008). Supporting family members have been defined in several ways (Koivula et al. 2007, Kaila 2009, Mattila et al. 2009). Finfgeld-Connett (2005,

3

2007) has defined supporting the patient and family members in the following way: an advocative interpersonal process that is centred on the reciprocal exchange of information and that is context-specific. In this study, the supporting of TBI patients’ family members is divided into informational, emotional and practical support (Coco et al. 2011). Nursing staff use different nursing interventions to support TBI patients’ family members. Here, the nursing interventions include giving information, explaining the reasoning behind the TBI patient’s care, and listening and encouraging as well as guiding family members in facing the TBI patient who is suffering from different trauma-induced symptoms and deficits. The competence of nursing staff has also been defined in diverse ways without any unanimous definition of the concept. Meretoja et al. (2004) defined competence as follows: competence integrates the cognitive, affective and psychomotor domains in nursing practice. According to Defloor et al. (2006), emergency and difficult situations require a different level of competence to that offered by the basic nursing education. In the model developed in the NeuroBlend project, neuronursing competence is divided into acute, rehabilitation and palliative nursing (van der Woert et al. 2007). In this study, competence is defined as a basic (achieved during education) or an advanced level (achieved with work experience in the current work unit) of expertise according to the needs of the patient.

4

2 Supporting TBI Patients’ Family Members

2.1 DEFINITION, PREVALENCE, SYMPTOMS AND TREATMENT OF TBI

Definition of TBI TBI means structural and/or functional damage to the brain from external energy caused by, e.g., a fall or getting hit by an object. Except in very mild brain injury, TBI is accompanied by a loss of consciousness or at least a period of memory loss, and may include other symptoms indicating brain dysfunction (e.g., disorientation) and increasingly demonstration of brain damage, depending on the accuracy and methodology of neuroimaging. Any one of these findings is a sufficient reason for considering the possibility of TBI. (Öhman et al. 2008.) Prevalence of TBI TBI patients constitute a notable patient group as nearly eight million TBIs are diagnosed globally each year (Koskinen & Alaranta 2008, Öhman et al. 2008, Thompson et al. 2009). In the United States, an estimated 1.7 million people sustain a TBI annually. Of those, 52,000 die, 275,000 are hospitalized, and 1.365 million are treated in emergency departments (Faul et al. 2010). In Finland, the prevalence of TBI is approximately 101/100,000, and 59% are men. In addition, an estimated 100,000 people have been left with permanent sequelae of TBI. (Koskinen & Alaranta 2008.) Symptoms of TBI and methods to alleviate them TBI can cause different kinds of physical, cognitive and emotional symptoms (Table 1). Physical symptoms Regarding physical symptoms, about a third of TBI patients suffer from long-term headaches (Öhman 2008, Bryan & Hernandez 2011, Falk 2012). Analgesic drugs that increase the risk of haemorrhage, such as most anti-inflammatory drugs, should not be used during the initial days. Drugs affecting the central nervous system are avoided as well. The abnormal fatigue caused by TBI is not alleviated by sleeping, and it does not feel like normal, healthy tiredness that one would experience following a brisk physical strain. It feels like comprehensive fatigue and can be likened to tiredness caused by burnout or severe depression. On some days the ability to function may be quite good but on others it might feel like getting out of bed is too much of an ordeal. For many, fatigue is the symptom with the most adverse effects on the quality of everyday life. (Cantor et al. 2008, Falk 2012.) If the fatigue is connected to sleeping disturbance, the primary task is to examine the reasons behind the disturbance and treat them. An increased need of sleep often comes with the fatigue. In general, significant limitations in physical abilities are rather unusual, depending, though, on the severity and type of TBI as well as the presence of other injuries in the head and body. If physical limitations occur, they must be addressed by guidance from a physiotherapist during the rehabilitation process. The guidance should have been initiated already during the initial hospital stay. The need for physiotherapy is also caused by other injuries

5

acquired in the accident. (Bland et al. 2011.) Guidance from a physiotherapist is also necessary in balance disturbances, particularly if the disturbances seem to persist with a further risk of falling down. Dizziness is preferably treated by getting the patient used to moving around rather than by drugs. (Öhman et al. 2008, Tenovuo 2010, Falk 2012, Murphy & Carmine 2012.) Cognitive symptoms Cognitive symptoms include concentration problems, memory problems and verbal problems together with unawareness of the symptoms. Former objects of interest are not interesting anymore, noise is more distracting than usual, and reading a book may feel too straining. Concentration problems often coexist with fatigue. Therefore, alleviating fatigue usually enhances concentration as well. TBI patients may suffer from memory problems and gaps, and they may have trouble finding words. Memory problems involve remembering new things, while the things before the accident are remembered as before. Objects get lost and even important things may be forgotten, and the TBI patient may repeat the same things several times. Weakness in short-term memory usually comes with learning difficulties. It is often hard to find an effective way to treat memory problems. (Öhman et al. 2008, Sigurdardottir et al. 2009, Clinical Practice Guideline 2009, Falk 2012.) TBI does not often cause severe verbal problems such as difficulty in speaking. However, mild language symptoms which may hinder communication with others in different situations are fairly usual. A speech therapist with knowledge of TBI sequelae can give guidance on how to deal with the symptoms. The changes in communication skills have the most significant effect on relationships. TBI patients may talk fluently but still have difficulties in expressing themselves in a prompt and understandable manner. Their ability to interpret others’ communication often deteriorates as well. (Öhman et al. 2008, Tenovuo 2010.) Unawareness of symptoms is a common remaining symptom of TBI (Kervik & Kaemingk 2005, Vanderploeg et al. 2007). The TBI patient then has difficulty, especially at the beginning, in noticing the changes in themselves and their ability to function, particularly their behavioural symptoms. The patient is usually quite well aware of memory problems and fatigue, but the lack of initiative and concentration problems are harder to be aware of. In most cases the awareness of symptoms improves over time, and it is common that in significant injuries the patient only starts to really realize what has happened a year after the TBI. Some patients may deny their symptoms, which can be hard to distinguish from unawareness of symptoms. (Öhman et al. 2008, Clinical Practice Guideline 2009, Tenovuo 2010.) In order to get on with everyday life, an ability to adapt to the changes brought by the TBI is usually required from the patients’ family members as well (Jaffee et al. 2009). Many TBI patients will face the fact that outsiders do not understand the inability of an entirely healthy-looking, often young, person to work and take care of their own life (Lindstam 2012).

Lack of initiative is a symptom that both the TBI patients themselves and particularly their family members often have difficulty in understanding and accepting. Others may mistake TBI patients for simply being lazy. (Norrie et al. 2010.) The lack of initiative may apply to things that normally would be nice and bring satisfaction. In addition even necessary things are left undone or at the least put off until the last minute, even if the patient was very active and organized before the injury. Lack of initiative often appears very troublesome to both the TBI patient and the family members. Others’ aid to get things started often helps. (Comper et al. 2005.)

If the TBI leads to slow functioning, more time has to be set aside for everything than previously, and doing things in a rush should be avoided. A TBI patient often has difficulty in understanding the passing of time. Things with multiple stages are best planned well

6

ahead and carried out one stage at a time. Things familiar from old can usually be done if they always happen in the same way. The slightest change may break the whole process if TBI has caused deterioration of planning skills. Slowness of functioning does not always show on the surface, but the patient feels that thinking and acting do not progress at the same pace as before. Family members are the best observers to find out and quantify the symptoms. Slowness can be seen in the patient’s way of moving and appearance – as if the patient had aged rapidly all of a sudden. (Öhman et al. 2008, Clinical Practice Guideline 2009, Tenovuo 2010, Falk 2012.) Table 1. Symptoms caused by TBI (Öhman et al. 2008).

Physical symptoms Cognitive symptoms Emotional symptoms

Headache Attention problems Depression and anxiety Dizziness

Nausea

Concentration problems

Being easily distracted

Impulsiveness, having a quick

temper

Fatigue and sleeping problems

Impaired memory and ability to learn

Personal characteristics being flattened or emphasized

Balance and coordination problems Disturbances of fine motor coordination

Dystonia Compulsive movements Parkinsonism Trembling

Perseveration Difficulty in verbal and non-verbal communication

Unawareness of symptoms

Sensitivity to stimuli Concretization or childlikeness of thinking Lack of judgment Difficulty in understanding the emotional content in speech Mild difficulty in finding words

Discursive speech

Emotional symptoms Emotional symptoms include aggressiveness and a quick temper. Changes in a TBI patient’s behaviour or emotional life are often the most difficult consequence from the family members’ viewpoint (Kneafsay & Gawthorpe 2004, Verhaeghe et al. 2005b, Wells et al. 2005, Clark et al. 2009). The changes in behaviour and emotional life are confusing also for the patients themselves, and they often lead to loss of self-image (Sinnakaruppan et al. 2005, Wongvatunyu & Porter 2005, Vanderploeg et al. 2007). It is entirely possible, however, that the patient’s personality and behaviour stay just as they were before, even if other distinct symptoms remain after the injury (Öhman et al. 2008). Changes in behaviour include increased irritability and a quick temper. A previously gentle character may become easily angered and unkind verbally to others. A quick temper is often accompanied by aggressiveness which fortunately usually stays at the verbal stage. On the other hand, the change can occur in the completely opposite direction, so that the person becomes more even-tempered and calm than before. (Tenovuo 2010.)

Mood swings from sadness to happiness can occur very rapidly even without an obvious reason. Learning how to manage the irritability, quick temper and aggressiveness is important in order for the TBI patient to avoid situations where they cannot keep their aggressions under control. Family members are often relieved by the fact that these kinds of

7

changes are a part of normal TBI symptoms. (Sinnakaruppan et al. 2005, Knapp et al. 2013.) The rapid swings in emotional life and mood can also bewilder TBI patients and their family members. Quick temper and drastic mood swings can be alleviated with medications if the symptoms are very inconvenient. (Öhman et al. 2008, Clinical Practice Guideline 2009, Tenovuo 2010.) Other common symptoms Other common symptoms remaining after TBI include decreased alcohol tolerance, difficulty with behaving appropriately in different situations, changes in appetite and sexual functioning, and difficulty with understanding non-verbal communication. Difficulty with understanding non-verbal communication can complicate relationships as the interpretation of tones, facial expressions and gestures does not work like before. Further symptoms include impairment or loss of the sense of smell, mild vision disorders, disturbances of sleeping patterns, and epilepsy. (Öhman et al. 2008, Clinical Practice Guideline 2009, Tenovuo 2010.)

Classification of TBI The severity of TBI is often classified using three variables: the Glasgow Coma Score (3-15) on admission; length of unconsciousness; length of post-traumatic memory loss. The assessment is importantly modified by the presence or absence of signs of trauma in the CT scans and, much more sensitively, in ordinary MR imaging or with more specific MRI sequences such as iron-sensitive MRI (sensitive to small haemorrhages not seen in CT scans) and diffusion tensor MRI (sensitive to injuries to white matter tract systems not seen in ordinary MR scans). (Öhman et al. 2008.) (Table 2).

In Finland, mild TBIs are still treated in basic health care while the treatment of moderate and severe TBIs is now centred in the neurosurgical units of the five university hospitals. In mild TBIs, 90% of all TBIs, the loss of consciousness and the period of post-traumatic amnesia (memory loss) is short. Findings in the initial CT scans are absent and the injury does not require neurointensive care or neurosurgical procedures. The majority of mild TBI sufferers recover fully, usually within a few days or weeks, but some 15% are left with long-term or even permanent symptoms. (Öhman et al. 2008.)

A moderate head injury is defined as the loss of consciousness for between 15 minutes and six hours, and/or a period of post-traumatic amnesia of up to 24 hours. The severity of the TBI is also considered moderate if abnormal intracranial findings caused by the injury can be detected in the brain scans. Most patients with moderate TBI are left with permanent symptoms (Table 1), although it is also possible to recover fully. (Öhman et al. 2008, Liimatainen et al. 2012.) (Table 2).

Patients with severe TBIs remain unconscious for at least half an hour after the injury or their memory loss lasts more than a week. TBIs requiring neurosurgical treatment are also considered severe. Patients with severe TBIs are nearly always left with permanent symptoms, although full recovery is sometimes possible. If the patient’s unconsciousness lasts for more than a week or they have a memory loss spanning more than a month, the TBI is considered very severe. Practically no patients with an injury of this severity make a full recovery, and a small proportion of the patients remain permanently unconscious. Patients with severe TBI are treated in the neurointensive care unit from where they are transferred to the neurosurgical ward for follow-up treatment. From the ward they are transferred to a central hospital, health centre ward, or rehabilitation facility. (Öhman et al. 2008.) (Table2).

Table

2.

Cla

ssific

ation o

f TBI

(Öhm

an e

t al. 2

008).

Very m

ild

M

ild

M

od

erate

S

evere

Very s

evere

All o

f th

e follow

ing

G

CS s

core

of 15 h

alf a

n

hour

aft

er

the inju

ry

and t

hro

ughout

monitoring

N

o loss o

f conscio

usness,

dura

tion o

f am

nesia

le

ss t

han 1

0 m

inute

s

N

o c

linic

al neuro

logic

al

findin

gs indic

ating

bra

in inju

ry

N

o r

ecent

fractu

re o

f th

e s

kull o

r base o

f th

e

skull

N

o fin

din

gs c

aused b

y

inju

ry in b

rain

CT o

r M

RI

scans

N

o n

urs

ing p

rocedure

s

necessitate

d b

y t

he

bra

in inju

ry

All o

f th

e follow

ing

G

CS s

core

of 13–15

half a

n h

our

aft

er

the

inju

ry a

nd

thro

ughout

monitoring

M

axim

um

length

of

PTA 2

4 h

ours

Maxim

um

length

of

unconscio

usness 3

0

min

ute

s

N

o intr

acra

nia

l

findin

gs c

aused b

y

inju

ry in b

rain

CT o

r M

RI

scans

N

o n

euro

surg

ical

pro

cedure

s

necessitate

d b

y t

he

bra

in inju

ry

One o

f th

e follow

ing a

nd n

one

of th

e fin

din

gs b

elo

ngin

g t

o a

severe

inju

ry

G

CS s

core

of 9–12

half a

n h

our

aft

er

the

inju

ry o

r at

som

e

poin

t la

ter

Length

of PTA m

ore

th

an 2

4 h

ours

but

less t

han s

even d

ays

In

tracra

nia

l findin

gs

caused b

y inju

ry in

bra

in C

T o

r M

RI

scans

Any o

f th

e follow

ing

G

CS s

core

of

maxim

um

of 8

half a

n h

our

aft

er

the inju

ry

or

at

som

e p

oin

t la

ter

Length

of PTA

more

than s

even

days

In

tracra

nia

l anom

aly

requir

ing

surg

ical

treatm

ent

Either

of th

e follow

ing

Length

of

unconscio

usness

more

than s

even

days

Length

of PTA m

ore

th

an four

weeks

GC

S =

Gla

sco

w C

om

a Sc

ale;

PTA

= P

ost

Tra

um

atic

Am

nes

ia; C

T =

Co

mp

ute

r To

mo

grap

hy

8

9

2.2 COMPETENCE IN SUPPORTING TBI PATIENT’S FAMILY MEMBERS

2.2.1 Supporting TBI patients’ family members Nursing staff use different nursing interventions to support TBI patients’ family members. Nursing interventions in this context mean providing information, explaining the reasoning behind the TBI patient’s treatment, listening and encouraging, and guiding family members how to cope the TBI patient, who is suffering from different symptoms and deficits caused by the TBI. Traumatic brain injuries happen suddenly and unexpectedly. That is why TBI patients’ family members often have primarily informational needs. Family members want information about the symptoms caused by TBI such as physical symptoms, including headache, vision disorders and difficulties in moving (Sinnakaruppan et al. 2005, McCabe et al. 2007, Verhaeghe et al. 2007, Arango-Lasprilla et al. 2010, Falk 2012, Lefebvre & Levert 2012), or disorientation after TBI as well as difficulties in producing and understanding verbal communication (Winstanley et al. 2006, Rotondi et al. 2007). TBI patients’ condition is often unstable, which complicates informing family members (Verhaeghe et al. 2007, Öhman et al. 2008, Roscigno et al. 2013). The monitoring of vital signs is very challenging (Lane-Brown & Tate 2009) as TBI causes different cognitive and emotional disturbances which are amplified by the pains caused by the injury (Gallagher et al. 2006). According to previous studies, family members found that they were not given sufficient information about potential problems and therefore were not able to prepare themselves for the problems (Lefebvre et al. 2008, Kontos et al. 2012). For instance, family members felt that it would have been good to have enough information in order to prepare themselves to face the patient, particularly when the TBI had caused impulsiveness or aggressiveness in the patient (Wells et al. 2005, Wongvatunyu & Porter 2005, Arango-Lasprilla et al. 2010, Berry et al. 2012).

Nursing staff provide emotional support for TBI patients’ family members by consoling, which alleviates uncertainty, anxiety, hopelessness and depression. Family members’ knowing that help is available if needed, sharing their concerns with someone and getting encouragement helps them to cope. Emotional support also entails listening and talking. (Finfgeld-Connett 2005, Murray et al. 2006, Roscigno et al. 2013.) The changes in TBI patients’ personality and behaviour cause stress to family members. According to family members, TBI patients are more aggressive, anxious, dependent, depressed and irritable, and had a worse memory after the injury than before it. (Hora & de Sousa 2005, Norup et al. 2010.) Pryor (2004) noted that environmental factors including disturbing noise, lack of privacy or choice, inexperienced staff, patients talking to family members, family’s too high expectations, and treating the patient as a “child” cause aggressiveness. This requires nursing staff to have the skill to interpret the hints that predict violent behaviour (Pryor 2005, 2006).

Nursing staff have to take into account the effects of the injury on the whole family when providing emotional support for family members (Verhaeghe et al. 2005b). By keeping up hope, nursing staff help TBI patients’ family members to cope with their difficult situation (Jumisko et al. 2007, Verhaeghe et al. 2007, Roscigno et al. 2013). On the other hand, family members wished that they were told when there was no hope left (Bond et al. 2003, Verhaeghe et al. 2007). It is important for family members to be able to talk about their feelings of guilt and about what has happened as talking helps them to cope with their difficult situation (Lefebvre et al. 2007). However, only a quarter of nursing staff evaluate that they inform family members about the effects of the injury on the family’s life (Coco et al. 2007). TBI patients’ family members also felt that they received too little preparation for

10

the future and experienced uncertainty and fear as understanding the situation was difficult for them (Rotondi et al. 2007).

Practical support means, e.g., guiding family members in the patient’s physical care, childcare services, help with transportation, help with household management as well as providing guidance in financial matters (Finfgeld-Connett 2005). In the acute phase it was extremely important for family members to be able to be present and participate in care, as they feared something would happen to their loved one while they were away (Bond et al. 2003, Driver 2005, Lam & Beaulieu 2004, Livesay et al. 2005, Verhaeghe et al. 2007, Sapountzi-Krepia et al. 2008, Lefebvre & Levert 2012). Family members’ participation in the patient’s care and nursing practices such as visiting hours vary in different cultures (Anzoletti et al. 2008, Sapountzi-Krepia et al. 2008). According to Livesay et al. (2005), nursing staff explained that limitations in visiting hours were important in order to ensure family members get some rest. TBI patients’ family members need support from nursing staff when assisting the TBI patient in daily activities, as disturbances in functioning and behaviour often exist after the injury. TBI may cause the patient’s functioning to get stuck, e.g., while eating. Being easily distracted, quick-tempered and sensitive to stimuli affects the patient’s ability to dress themselves independently. Unawareness of symptoms prevents the patient from understanding the limitations in movement caused by hemiparesis. Problems with memory and learning impede the using of aids designed for walking and moving. (Öhman et al. 2008.) The danger of TBI patients becoming isolated is increased by the combination of worsened initiative and social skills with unawareness of symptoms (Kervick & Kaemingk 2005). Family members need information about the possibility of having a personal assistant, activities of brain injury organizations, organization of work trials and services of rehabilitation outpatient clinics, as the brain injury patients often cannot look after their benefits or health (Leith et al. 2004, Winstanley et al. 2006, Öhman et al. 2008, Jaffee et al. 2009, Kontos et al. 2012, Lefebvre & Levert 2012, Calvete & deArroyabe 2012).

In summary, it can be stated that supporting TBI patients’ family members is initiated by their needs and entails broad and multifaceted competence from nursing staff. At the beginning of treatment, family members particularly have informational needs related to the TBI patient’s care and prognosis, which they try to use to maintain hope. Family members also need encouragement and listening to in their difficult situation. Furthermore, they need guidance from nursing staff on how to participate in the TBI patient’s care and how to acquire the necessary services to promote the rehabilitation of their loved one.

2.2.2 Competence in TBI patients’ nursing practice Competence integrates the cognitive, affective and psychomotor domains in nursing practice (Meretoja et al. 2004). According to Defloor et al. (2006), emergency and difficult situations require more competences than those offered by basic nursing education. The model developed in the NeuroBlend project divides neuronursing competence into acute, rehabilitation and palliative nursing. These domains of nursing practice are not dependent on the nursing unit, as nursing staff may have to solve TBI patients’ sudden problems, and on the other hand, the TBI patients’ rehabilitation may have already begun on the first day of treatment (van der Woert et al. 2007). Furthermore, nursing staff in the intensive care unit may have to carry out palliative nursing (Thompson ym. 2006, Calvin ym. 2007, Verhaeghe et al. 2010a, 2010b). The aim of rehabilitation neuronursing is that the patient relearns how to communicate, move and function as normally as possible. Palliative care caters to the patient’s physical, psychological, social and spiritual needs. (van der Woert et al. 2007.) In this study, the competence in nursing TBI patients and supporting their family members is divided into informational, emotional and practical domains, in all of which nursing staff need basic and advanced competence.

When the patient’s situation is acute, nursing staff carry out suitable and appropriate treatment together with physicians and a multidisciplinary team, according to the practices

11

of the organization. Nursing staff have to be competent to monitor TBI patients’ condition so that declines in their state of health can be prevented. (Hickey 2009, Olson et al. 2013.) The aim of TBI patients’ acute nursing is to prevent the worsening of acute TBI by securing vital functions, treating complications like intracranial haematomas, and preventing complications like infections of an open injury (Celik 2004, Tasker et al. 2006, Öhman et al. 2008). Primary brain injury is irreversible and causes mechanical tissue damage, swelling, blood congestion and, in addition brain circulation deficiency which may cause the development of secondary brain injuries (Öhman et al. 2008). Therefore, in the case of acute TBI patients, nursing staff need information about the patient’s vital functions such as their circulation, respiration and body temperature. Nursing staff have to be able to gather information about TBI patients’ level of consciousness using reliable instruments, pupil size, and symptoms related to raised intracranial pressure as well as indicators of epileptic seizures. (Barker 2002, Kneafsey & Gawthorpe 2004, Olson et al. 2013.) Nursing staff have a significant role in the success of TBI patients’ fluid replacement therapy (Cook et al. 2004). It is important that nursing staff gather information from both the TBI patient and the family members in order to get a comprehensive picture of the TBI patient’s condition. Particularly in the case of the patient suffering from unawareness of their symptoms, family members are best to describe the patient’s condition before the injury. (Friedman et al. 2003, Öhman et al. 2008, Hickey 2009.) On the other hand, Verhaeghe et al. (2007) noted that family members cannot necessarily understand the meaning of specific parameters such as monitoring of intracranial pressure. Nursing staff must be able to support TBI patients and their family members in their grief (Marwit & Kaye 2006). In addition, nursing staff guide TBI patients and their family members in rapidly changing situations and after bad news has been given to them (Bay & McLean 2007, Verhaeghe et al. 2007, Roscigno et al. 2013).

In the rehabilitation nursing of TBI patients, nursing staff, together with a multidisciplinary team, have to find out the TBI patients’ needs and the disturbances and injuries that complicate their daily functioning. Rehabilitation depends on the severity of the injury, the deficiency symptoms (paralysis, disturbances of verbal and other mental functions, incontinence), the patient’s age and ability to function prior to the illness, demands of work for the working age patients, social network and the patient’s own motivation (Brain Association 2013). Good interaction between TBI patients and nursing staff promotes rehabilitation (Burton & Gibson 2005). Therefore, nursing staff are required to have particularly good interaction skills so that they are able to cope with, e.g., disorientated and aggressive patients (Pryor 2004). It is very important for TBI patients’ rehabilitation that nursing staff allow the patient to have enough time to express themselves and that nursing staff listen to both the patient and their family members in a professional manner (Lindstam 2012, Kontos et al. 2012). Nursing staff gather information about TBI patients’ moving, cognitive state, behaviour and ability to cope with daily functions. Information is gathered from the TBI patients if their condition allows it. TBI patients’ treatment needs are assessed together with a multidisciplinary team and the potential changes in the patients’ sensomotor, cognitive and emotional disturbances are anticipated. (Hickey 2009.) Family members play a central role in supporting the TBI patient to cope at home (O’Connell et al. 2003, Kneafsey & Gawthorpe 2004, Kontos et al. 2012). Nursing staff are therefore in a significant position in guiding the TBI patients and their family members, e.g., at discharge from hospital and after it (Kneafsey & Gawthorpe 2004, Burton & Gibson 2005, Falk et al. 2008).

In rehabilitation nursing, nursing staff carry out interventions related to the patient’s sensomotor, cognitive and emotional state (Hickey 2009). Nursing staff support and guide the patient in relearning how to move, look after themselves, engage in hobbies and interact with others. The patient and family members are also supported to cope financially and their social networks are sorted out. It is important to prevent different complications, e.g., shoulder pain (Leung et al. 2007), pneumonia or contractures (Forsbom et al. 2001, Seneviratne et al. 2005, van der Woert et al. 2007, Murphy & Carmine 2012). Receiving

12

support has, in addition, been noted to be related to how TBI patients and their family members cope later on (Smith et al. 2004, Burton & Gibbon 2005, Calvete & deArroyabe 2012). The co-operation of the treatment team and the results of rehabilitation are recorded in a rehabilitation plan. In TBI patients’ rehabilitation nursing it is also important that, among other things, the effects of the planned rehabilitation are recorded in the rehabilitation plan (Pitzén et al. 2012).

Palliative nursing of TBI patients is the comprehensive care given to patients with life-threatening or fatal injuries and their families, where the alleviation of pain and other symptoms and the processing of psychological, social and spiritual problems are essential. Nursing staff have to recognize problems related to the patient’s care and the causes behind them, as well as the patient’s symptoms, by monitoring the TBI patient’s pain, changes in vital functions, swallowing, ability to move, neurological and cognitive functions, and mental state, e.g., grief and hopelessness. (Thompson et al. 2006, van der Woert et al. 2007.) Nursing staff use valid instruments, e.g., the Rand-36 instrument (Tomberg et al. 2007), to assess the TBI patients’ and their family members’ quality of life. Nursing staff can, in addition, utilize pain scales (Ofek & Defrin 2007) or the MMSE test (Özbudak et al. 2006). Nursing is based on comprehensive information gathered from the TBI patient, family members, other professionals and the nursing staff themselves. It is also important to gather information about the TBI patient’s respiration, elimination and nutritional state. The care plan is based on the family’s viewpoint (Forsbom et al. 2001, Thompson et al. 2006, van der Woert et al. 2007). It is essential that the patient and family participate in planning the patient’s care. The aim of the interventions is to console the patient and the family, and promote and maintain the patient’s dignity and quality of life. Nursing staff must recognize the factors that may cause suffering to the TBI patient and their family. (Thompson et al. 2006, Roscigno et al. 2013.) The care plan takes into account the patient’s needs both in the short term, e.g., pain relief, and in the long term, e.g., needs related to the quality of life. It is important that nursing staff are able to coordinate the TBI patient’s care systematically and to co-operate in a multidisciplinary team. Nursing staff coordinate the transfer of a TBI patient from the ward to a nursing home or a rehabilitation centre. (Wideheim et al. 2002, Thompson et al. 2006, van der Woert et al. 2007, Lefebvre & Levert 2012.)

Neuronurses have to take part in discussions concerning the development of TBI patients’ nursing practice. Furthermore, they have to recognize development needs in TBI patients’ nursing. The law on health-care professionals requires neuronurses to maintain and develop their professional skills and be familiar with the laws concerned with nursing practice (559/1994). In order for neuronursing staff to achieve professional growth, they have to be able to assess their professional competence continuously (cf. Heikkilä et al. 2007). TBI patients’ neuronursing practices should be based on scientific research and knowledge from other branches of science. Nursing staff have to recognize the efficient, safe and effective practices in TBI patients’ nursing. It is important that nursing staff update their knowledge of new research results and nursing practices. (Virta-Helenius et al. 2004 van der Woert et al. 2007, Olson et al. 2013.) Neuronursing staff evaluates their competence in utilizing research information and taking part in developmental activities as moderate (Mäkipeura et al. 2007). The development of neuronursing practice by utilizing research information requires neuronursing staff to have the ability to assess the reliability of research (cf. Heikkilä et al. 2007).

2.2.3 Conclusion In Finland it’s evaluated that 80,000-120,000 new social and health-care workers will be needed by the year 2025. Social and health care is struggling already with a lack of competent nurses. (Mäkitalo et al. 2010.) Informal care is already common in many countries, where families provide care in hospitals. Health education and informational

13

needs are important factors for family members which are often underestimated by nursing staff (Lavdaniti et al. 2011).

In this study the supporting of TBI family members has three dimensions: informational, emotional and practical. TBI patients’ family members need information about care, treatment and prognosis (Verhaeghe et al. 2005a, 2005b). For TBI patients’ family members coping with the consolation is essential because it alleviates uncertainty, anxiety, hopelessness and depression (Chronister et al. 2010, Keenan & Joseph 2010, Berry et al. 2012). TBI patients’ family members’ involvement promotes patients’ coping, thus it is crucial that nursing staff teach how to participate in care and rehabilitation (Winstanley et al. 2006, McCabe et al. 2007).

The competence required in TBI patients’ treatment can be examined from the viewpoint of acute, rehabilitation and palliative nursing according to the NeuroBlend model. The model is based on the supposition that, e.g., the rehabilitation of TBI patients begins in the neurointensive care unit straight after the injury and, on the other hand, TBI patients receiving palliative care may only suffer from symptoms that require acute treatment. TBI patients’ nursing is always multidisciplinary. The condition of a TBI patient can also be so severe that they receive palliative care straight after the injury. (van der Woert et al. 2007.)

Supporting TBI patients’ family members and the required basic and advanced competence from nursing staff’s viewpoint has previously scarcely been studied. Research concerning family members’ needs after their loved one has suffered a TBI exists, but the studies are mostly qualitative and the sample sizes in quantitative studies are small. There is a lack of previous research on supporting family members on the ward straight after the TBI patient has been transferred from the intensive care unit.

14

3 Purpose of the Study, Research Questions and Design

The purpose of the study was to examine what supporting TBI patients’ family members entails and how often nursing staff provide support for TBI patients’ family members as well as what kind of nursing competence (basic/advanced) is needed to support TBI patients’ family members on neurosurgical wards. In addition, the aim was to examine the relationship between background variables and how often nursing staff provided support for TBI patients’ family members and what kind of competence is required. The research questions were:

Based on previous research, what does supporting TBI patients’ family members entail? (Original publication I).

According to the nursing staff’s evaluations, how often do they provide support (informational, emotional, practical) for TBI patients’ family members? (Original publications II-IV).

Are the background variables (age, education, work experience as a nursing staff member, work experience in the current work unit) of nursing staff related to how often they provide support for TBI patients’ family members? (Original publications II-IV).

According to the nursing staff’s evaluations, what kind of competence (basic/advanced) is needed to provide support (informational, emotional, practical) for TBI patients’ family members (Original publications II-IV).

Are the nursing staff’s background variables (age, education, work experience as a nursing staff member, work experience in the current work unit) related to how they evaluate the level of competence? (Original publications II-IV).

The study design is presented in Figure 1.

Figure 1. Study design.

PHASE I

(2008-2010)

Systematic

literature review

Support for TBI

patients’ family

members in nursing

PHASE II

(2010-2012)

Survey for neurosurgical nurses at university hospital Implementation of

Informational support Emotional support

Practical support

Competence needed to

implement nursing

interventions

Basic

Advanced

15

4 Data and Methods

4.1 PHASE I: SYSTEMATIC REVIEW (PAPER I)

Data A systematic literature review (2008-2010) was carried out in the first phase of the study in order to find out how previous research during the years 2004-2010 defines the supporting of TBI patients’ family members. The searches were made in the CINAHL, Cochrane, PsycINFO and Web of Science databases using the search terms ”family”, ”relatives”, ”sibling”, ”next of kin”, “significant other”, “traumatic brain injury”, “head trauma” and ”nurs*” (search term includes “nursing” and “nurse”). The search resulted in 195 studies, of which 22 were selected for the final data (Paper I: Figure 1, Appendix 1). Figure 2. Progression of the systematic review.

Results of electric

searches 195 references

Excluded based on

abstract (n = 68)

Exclusion criteria:

Less than two search

terms used

Dissertation or congress

report

Written in other

language than Finnish,

English, Italian, Swedish

Accepted based on full

text (n = 22)

The study corresponded

to the aim of rewiev

Accepted based on

abstract (n = 48)

Focused on adult TBI

patient/family

Accepted based on

article title (n = 116)

The title included at

least on of the search

terms

Excluded based on title

(n = 79)

Exclusion criteria focus

of children’s congenital

brain injury

Not peer rewieved

Excluded based full text

(n = 26)

Exclusion criteria:

The study did not

correspond to the aim

and context of the

review

The research article was

not available

16

Analysis of data In the study, the data from the systematic literature review were analysed using content analysis. The analysis was started by carefully reading all of the research articles, and keeping the study question in mind so that it was possible to gain a complete sense of the contents. Subsequently, the central results were set in tabular form and they were analysed. The data were then coded. After this, codes that included similar actions were grouped together into sub-categories and named accordingly. The original phrases picked from the articles were grouped according to the domains of support. Units of analysis (word, sentence, phrase) were then selected. The phrases were further grouped into their own categories based on their similarities and differences. After that, the original units of analysis were reduced by retaining their original meaning. Next, by combining subcategories with similar contents, categories were formulated. During the analysis, categories were identified and developed in terms of their properties and dimensions. The categories were named with terms describing the data. (Burns & Grove 2001, Cavanagh 1997, Elo & Kyngäs 2007). (Paper I: Tables 1-3).

4.2 PHASE II: SURVEY FOR NEUROSURGICAL NURSING STAFF (PAPERS II-IV)

Development of the questionnaire In the second phase of the study (2010) the questionnaire (Appendix 5) formed for this study was used to collect nursing staff’s perceptions about what kind of competence (basic/advanced) is required – and how often – by the supporting of TBI patients’ family members. The questionnaire included five questions relating to background information, 39 statements relating to informational support, 16 statements relating to emotional support and 29 statements relating to practical support. The statements were answered on a six-point Likert scale: 5 = always, 4 = often, 3 = occasionally, 2 = seldom, 1 = never and 0 = does not affect me. Whether the content of the statement required basic or advanced competence was evaluated on a two-point scale: 1 = basic competence and 2 = advanced competence. The questionnaire was based on previous research on providing support for TBI patients’ family members and the systematic literature review carried out in the first phase of the study. The questionnaire was also reviewed by a panel of experts in TBI patients’ care (two registered nurses, a practical nurse, a nurse director, an anaesthetist and a neurosurgeon). The panel of experts evaluated the content of the questionnaire and the suitability of the statements in relation to TBI patients’ care and supporting their family members. The experts stated that the questionnaire was comprehensive in content and proposed the removal of exact parameters related to, e.g., blood glucose values as well as the addition of the statement ”I maintain the hope of the family members of a TBI patient without giving false hope”. Further, two nursing staff members with extensive experience in treating TBI patients piloted the questionnaire (Appendix 5). They found that the statements were understandable and the questionnaire did not lack anything essential and was easy to answer. On the other hand, they noted that the number of statements was high, but as a comprehensive view of the phenomenon was wanted, the number of statements was not reduced (Figure 3).

17

Figure 3. Development of the questionnaire.

Sample The sample consisted of all nursing staff working on the neurosurgical wards (N = 6) at all university hospitals (N = 5) in Finland. The questionnaires were sent via contact persons to all nursing staff (N = 172) working on the neurosurgical wards (N = 6) in Finland. All registered nurses and practical nurses (licensed vocational nurses), together with assistant head nurses and head nurses, were invited to participate. The response rate was 67% (Papers II-IV). Analyses of the questionnaire data The data from the questionnaire were statistically analysed using SPSS statistical software 17. Descriptive statistics means and deviations were examined first. It was noted that the deviations varied. Next, factor analysis was carried out, with the value “0” left out of the analysis. The factor analysis was carried out using the principal component and principal axis method with Varimax rotation. For further analyses, the background variables age and education were reclassified (DeVellis 2012).

The factor analysis solutions relating to informational support were examined starting with 39 variables. The variables with loadings under 0.500 were omitted from the analysis one at a time. A total of 22 variables were included in the final factor analysis. The factor solution explained 64.5% of the total variance with respect to the informational support provided for TBI patients’ family members; the communalities ranged between 0.520 and 0.799. The informational support factor loadings ranged between 0.503 and 0.862. The factor solution of emotional support explained 56.8% of the total variance and the communalities varied between 0.316 and 0.605. The emotional support factor loadings ranged between 0.410 and 0.830. Altogether 16 variables were included in the factor analysis for emotional support. The factor solution of practical support explained altogether 59.7% of the total variance and the communalities were between 0.304 and 0.793. The practical support factor loadings varied between 0.421 and 0.858. There were a total of 28 statements relating to practical support provided for TBI patients’ family members (Burns & Grove 2001).

Nursing intervention sum variables were formed based on the factors. The Kolmogorov-Smirnov test was used to examine the distributions. The distributions were all normal. The relationships between the background variables and the nursing intervention sum variables were examined using one-way ANOVA, two-way ANOVA, MANOVA and linear regression. The results were evaluated using the p-value (p < 0.05). (Polit & Beck 2012.) In addition, the internal consistency of the questionnaire was evaluated by calculating Cronbach’s alpha coefficients for the mean sum variables related to the supporting of TBI patients’ family members (Burns & Grove 2001) (Table 4).

Research of existing

literature supporting TBI

patient’s FM

Planning and preparation of

questionnaire

Systematic literature review

Finalizing the

questionnaire

Team of experts’ panel Changes to questionnaire Pilot study

18

Percentage distributions of the nursing staff’s perceptions about the level of competence (basic/advanced) associated with nursing interventions were also examined. Finally, competence mean sum variables in respect of the nursing intervention sum variables were formed; the means varied from one (1 = basic competence) to two (2 = advanced competence). The relationships between the background variables and the competence mean sum variables were examined using one-way ANOVA, two-way ANOVA, MANOVA and linear regression. The results were evaluated using the p-value (p < 0.05) (Polit & Beck 2012). In addition, Pearson’s correlation was used for calculating whether there was a correlation between how often nursing staff provided support for TBI patients’ family members and how they determined the level of competence (basic/advanced) (Polit

& Beck 2012). The summary of data and analyses are presented in Table 3. Table 3. Survey study for neurosurgical nurses, data and analyses.

Study focus Data Data analysis

Nursing staff’s evaluations on supporting TBI patients’

family members

Survey n = 115

Percentages, means, standard deviations, Kolmogorov-Smirnov, factor

analysis, one-way Anova, two-way Anova, Manova, linear regression

Nursing staff’s evaluations on their competence to support TBI patients’ family members

Survey n =115

Percentages, means, standard deviations, one-way Anova, two-way Anova, Manova, linear regression

19

5 Results

The results of the study are presented in the following by combining the results of the systematic literature review (Paper I) and nurses’ evaluations of the implementation of informational, emotional and practical support and the competency needed to support TBI patients’ family members (Papers II-IV).

5.1 INFORMATIONAL SUPPORT IN SUPPORTING TBI PATIENTS’ FAMILY MEMBERS

As a result of the content analysis of the systematic literature review in the first phase of the study, four classes of informational support were formed: information about TBI patients’ symptoms, information about TBI patients’ treatment, quality of information and information about TBI patients’ prognosis (Figure 4). TBI patients’ symptoms vary from physical and cognitive symptoms to behaviour problems and they cause stress and anxiety for family members. Family members therefore need information about the symptoms caused by the injury. Family members want to be informed about the patient’s treatment and reassured that the patient receives the best possible care and that no injuries are left unnoticed. In addition, family members want to know about the patient’s medication. (Wongvatunyu & Porter 2005, McCabe et al. 2007, Arango-Lasprilla et al. 2010.) Regarding the quality of information, family members found that they did not always receive enough information in order to participate in making decisions about the patient’s appropriate treatment. Family members further criticized meetings with health-care professionals for their short duration and for the meetings not attending to family members’ current needs. Family members also wanted to have all information in written form. They felt that questions should be answered honestly and understandably. Family members wanted information about the consequences of TBI and the potential problems. (Verhaeghe et al. 2005b, Murray et al. 2006, Arango-Lasprilla et al. 2010.) (Paper I)

20

Figure 4. Informational support for TBI patients’ family members according to systematic review

(Coco et al. 2011).

The results of the survey for nursing staff on neurosurgical wards in the second phase of

the study showed that as a whole, nursing staff evaluated that they provided informational support for TBI patients’ family members fairly often (3.4, SD ±0.599). Nursing staff evaluated that they provided support for TBI patients’ family members most often by telling them about management of the symptoms caused by TBI (mean 3.7, SD ±0.738) and the evaluation of treatment efficacy (mean 3.7, SD ±0.742). On the other hand, they fairly seldom informed family members about vital signs monitoring (mean 3.3, SD ±0.792), control of intracranial pressure (3.3, SD ±0.938) and the prevention of secondary injuries (3.2, SD ±0.859).

According to the nursing staff’s evaluations, a basic level of competence was most needed in evaluating the efficacy of treatment (1.3, SD ±0.351) and vital signs monitoring (1.4, SD ±0.321). On the other hand, the nursing staff evaluated that control of intracranial pressure requires advanced competence (1.6, SD ±0.395).

Taking into consideration of the background variables, the nursing staff member’s age (p = 0.010), length of work experience as a nursing staff member (p = 0.004) and length of work experience in the current work unit (p = 0.002) were connected to how often they told TBI patients’ family members about vital signs monitoring. Nursing staff members with 11-20 years and 21 or more years of work experience in the current work unit most often told family members about the control of intracranial pressure. Practical nurses (p = 0.000) told family members least often about the management of symptoms caused by TBI. Education

INFO

RM

ATIO

NAL S

UPPO

RT

SUP

PO

RT

Information about

TBI patients’

symptoms

Information about

TBI patients’ care

The quality of

information

physical, cognitive, behavioural

problems

information about injuries and their

sequelae

education reduces FM stress

to be ensured TBI patient gets the

best possible care

need to understand medical care

concrete and written

enough accurate information

understable information

honesty

Information about

prognosis

information about rehabilitation

process

help to prepare for the worst

information about potential

consequences and problems

to be warned about po

21

was also connected to providing information about the efficacy of treatment, as registered nurses with a university of applied sciences education told family members about it most often (p = 0.007) (Paper II).

5.2 EMOTIONAL SUPPORT IN SUPPORTING TBI PATIENTS’ FAMILY MEMBERS

As a result of the content analysis of the systematic literature review in the first phase of the study, three classes of emotional support were formed: taking TBI patients’ family members’ feelings into account, caring and listening, and respecting family members (Figure 5). The changes in a TBI patient induced by the injury cause family members to have different feelings, like fear, anxiety, shame and guilt. Furthermore, the aggressiveness of a TBI patient caused suffering for family members (Wells et al. 2005). Family members found that some times doctors do not give any hope for the recovery of aTBI patient (Wongvatunyu & Porter 2005), and occasionally family members talked about feeling sadness similar to if their loved one had perished. Their loved one had not actually died, but the TBI had caused the patient’s personality to change so that family members did not recognize them as the same person any more. Receiving care and being listened to helped family members to cope with their difficult situation. Family members found it particularly important to discuss difficult topics, such as marital problems or feelings of shame, with nursing staff. (Winstanley et al. 2006, Charles et al. 2007, Keenan & Joseph 2010.) Family members primarily wanted TBI patients’ needs and wishes to be respected (Hart et al. 2007, Arango-Lasprilla et al. 2010). Nursing staff must take into account the different progression rates of family members’ grieving processes (Lefebvre et al. 2007). (Paper I)

Figure 5. Emotional support for TBI patients’ family members according to systematic review

(Coco et al. 2011).

EM

OTIO

NAL S

UPPO

RT Taking emotions

into account

Respecting

Caring and listening

grieve the loss of a person

share feelings

reassuring it is usual to have negative

feelings

conflicts with the personnel should be

avoided because they induce stress

taking opinions into account

concern of professional pessimism

reciprocal communication

holding on to hope

discuss with someone with a similar

experience

22

As a result of the survey in the second phase of the study, the mean sum variables of emotional support were formed: taking into account TBI patients’ family members’ individuality and respecting them, encouragement of TBI patients’ family members, supporting the ability of TBI patients’ family members to cope, creating a safe atmosphere, and dealing with difficult emotions expressed by TBI patients’ family members. As a whole, nursing staff evaluated that they provided emotional support for TBI patients’ family members fairly often (3.7, SD ±0.470). According to the nursing staff’s evaluations, they most often took into account TBI patients’ family members’ individuality and respected them (4.4, SD ±0.503). Nursing staff also stated that they often encouraged TBI patients’ family members (4.0, SD ±0.557). Nursing staff fairly often supported family members’ ability to cope (3.6, SD ±0.619) and created a safe atmosphere (3.3, SD ±0.769), and dealt less often with family members’ difficult emotions, such as anger and guilt (2.8, SD ±0.780).

From the nursing staff’s perspective the provision of emotional support for TBI patients’ family members required basic competence encouragement of TBI patients’ family members (1.3, SD ±0.337); dealing with difficult emotions expressed by TBI patients’ family members (1.3, SD ±0.383); supporting the ability of TBI patients’ family members to cope (1.4, SD ±0.441); creating a safe atmosphere (1.1, SD ±0.343); taking into account TBI patients’ family members’ individuality and respecting them (1.2, SD± 0.365).

Nursing staff’s background variables were not connected to either how often nursing staff evaluated supporting TBI patients’ family members or what level of competence they assessed is required by emotional support. (Paper III)

5.3 PRACTICAL SUPPORT IN SUPPORTING TBI PATIENTS’ FAMILY MEMBERS

As a result of the content analysis of the systematic literature review in the first phase of the study, four classes of practical support were formed: supporting family members in decision-making, promoting welfare, supporting family members in participating in TBI patients’ care, and co-operation with family members and guidance to support services (Figure 6). Family members wanted to participate in the patient’s care and take part in making decisions about the patient’s treatment. Family members need support and help in order to cope with the problems they face with the TBI patient on a daily basis. Nursing staff and peer support groups provide family members with tools to deal with the problems they are faced with. (Sinnakaruppan et al. 2005.) The welfare of family members is promoted by them having a chance to get a break from the TBI patient’s care (Kneafsey & Gawthorpe 2004, Winstanley et al. 2006). Both the family members and the health-care professionals found that the support provided for behaviour disturbances was insufficient (Murray et al. 2006, Cornwell et al. 2009). McCabe and co-workers (2007) noted that co-operation with a social worker promoted the welfare of TBI patients’ family members, but the family members’ welfare lessened when they did not have the opportunity to attend to their own needs (Winstanley et al. 2006; Lefebvre et al. 2008). When family members had the opportunity to participate in the TBI patient’s daily care on the ward, they evaluated that they were better able to cope with assisting the patient in daily activities and supporting rehabilitation at home (Rodgers et al. 2007). Family members need guidance to acquire financial support at an early stage in case they need to leave their job to be the TBI patient’s carer after the patient’s discharge from hospital (Rotondi et al. 2007, Wongvatunyu & Porter, 2005, Arango-Lasprilla et al. 2010). Family members found that

23

nursing staff did not know enough about support services, which then caused family members not to seek services in time and so the services were delayed. Family members felt that transporting the patient to different services was particularly hard (Leith et al. 2004). Family members wanted to co-operate with a physiotherapist and an occupational therapist. Family members needed guidance on the aids that the TBI patient needed at home after discharge from hospital. (Leith et al. 2004.) (Paper I) Figure 6. Practical support for TBI patients’ family members according to systematic review

(Coco et al. 2011).

As a result of the survey in the second phase of the study, the mean sum variables of practical support were formed: co-operation with TBI patients’ family members (mean 4.2; SD ±0.617), planning the TBI patient’s discharge with family members (mean 3.7; SD ±0.754), guidance in daily activities (mean 3.5; SD ±0.685), respectful attitude and supporting family members’ refreshment (mean 3.1; SD ±0.746), and guiding family members in facing TBI patients’ mood swings and the symptoms caused by TBI (mean 3.0; SD ±0.705). As a whole, nursing staff evaluated that they provided practical support for family members fairly often (3.4, SD ±0.545).

Nursing staff evaluated that teaching TBI patients’ family members in daily activities (1.5; SD ±0.376) requires the most advanced competence. Guiding family members in situations when the TBI patient has mood swings (1.3; SD ±0.362) was seen as basic competence. Guiding family members to have refreshment and breaks (1.2; SD ±0.329), planning discharge from hospital (1.2; SD ±0.362), and co-operation with family members (1.2; SD ±0.367) were also noted to require basic competence.

PRACTIC

AL S

UPPO

RT

SUP

PO

RT

Decision-making

Promoting welfare

to know legal rights

to be an advocate of the TBI patient

to know available options

educational program

having break and resources

possibility for FM to direct energy

toward TBI patient

provide care to the TBI patient

participation in rehabilitation

to be told what was done

Co-operation with

family members

and counselling

services

outpatient rehabilitation

the provision of respite care

available rehabilitation services over

time

social work liaison

financial counselling

Encouraging family

members to

participate in care

educational programme

having breaks and resources

possibility for FM to direct energy

toward TBI patient

provide care for the TBI patient

participation in rehabilitation

to be told what was done

24

Taking into consideration of the background variables, practical nurses evaluated they

co-operate less with TBI patients’ family members than registered nurses (p = 0.021). According to the results, it seems that the long work experience is connected to how often nursing staff guided family members when the TBI patient had mood swings (p = 0.036). In addition, the long work experience as a nursing staff member (p = 0.015) and the long work experience in the current work unit (0.059) were connected to how often nursing staff guided family members to have breaks and refreshment (Paper IV).

5.4 SUMMARY OF THE RESULTS

According to the systematic review’s results, it was important to TBI family members that their emotions were taken into account and that they could feel respected. Family members also wanted to co-operate with health-care personnel when the TBI patient was discharged. In addition, it was crucial to get information about care and TBI symptom management.

The survey results showed, most often nurses evaluated that they provided emotional support, e.g., took into account the TBI patient’s family members and respected them. Nurses also often provided practical support, and they stated that they had a liaison with TBI patients’ family members. Nurses furthermore often provided encouragement for the TBI patient’s family members. Discharge planning, information about treatment efficacy and TBI symptom management were likewise often provided. Nurses stated that basic competence was needed to provide these support interventions. (Table 4)

In addition, registered nurses often provided information about evaluation of treatment efficacy and symptom management, and co-operated with TBI family members when the TBI patient was discharged.

Table

4.

Mean n

urs

ing inte

rvention/c

om

pete

nce s

um

vari

able

s lin

ked t

o s

upport

ing T

BI

patients

’ fa

mily m

em

bers

.

In

terven

tion

su

m

varia

ble

s

Alp

ha

Com

pete

nce s

um

varia

ble

s

Alp

ha

Dim

en

sio

n o

f

su

pp

ort

M

ean

SD

Mean

SD

Takin

g into

account

TBI

patients

’ fa

mily

mem

bers

’ in

div

iduality

and r

especting t

hem

4.4

0.5

43

0.5

4

1.2

0.3

65

0.9

3

em

otional

Lia

ison w

ith fam

ily m

em

bers

4.2

0.6

17

0.6

1

1.2

0.3

67

0.9

2

pra

ctical

Encoura

gem

ent

of TBI

patients

’ fa

mily

mem

bers

4.0

0.5

57

0.8

4

1.3

0.3

37

0.8

4

em

otional

Pla

nnin

g t

he T

BI

patient’s d

ischarg

e fro

m

hospital

3.7

0.7

54

0.7

6

1.3

0.3

62

0.6

9

pra

ctical

Sym

pto

m m

anagem

ent

3.7

0.7

38

0.8

0

1.5

0.3

50

0.6

8

info

rmational

Evalu

ation o

f tr

eatm

ent

effic

acy

3.7

0.7

42

0.7

4

1.3

0.3

51

0.6

6

info

rmational

Support

ing t

he a

bility o

f TBI

patients

’ fa

mily

mem

bers

to c

ope

3.6

0.6

19

0.7

0

1.4

0.4

41

0.7

3

em

otional

Teachin

g fam

ily m

em

bers

in d

aily a

ctivitie

s

3.5

0.6

85

0.9

2

1.2

0.3

79

0.9

2

pra

ctical

Vital sig

ns m

onitori

ng

3.3

0.7

92

0.9

0

1.4

0.3

21

0.7

7

info

rmational

Contr

ol of in

tracra

nia

l pre

ssure

3.3

0.9

38

0.8

4

1.6

0.3

95

0.7

5

info

rmational

Cre

ating a

safe

atm

osphere

3.3

0.7

69

0.7

6

1.1

0.3

43

0.8

7

em

otional

Pre

vention o

f secondary

inju

ries

3.2

0.7

42

0.8

9

1.5

0.3

51

0.8

5

info

rmational

Support

ing fam

ily m

em

bers

with r

espect

to

bre

aks a

nd r

ecre

ation

3.1

0.7

46

0.8

4

1.2

0.3

29

0.9

0

pra

ctical

Teachin

g fam

ily m

em

bers

to d

eal w

ith t

he T

BI

patient’s m

ood s

win

gs a

nd t

he s

ym

pto

ms

caused b

y t

he T

BI

3.0

0.7

05

0.9

0

1.5

0.3

76

0.8

9

pra

ctical

Dealing w

ith d

ifficult e

motions e

xpre

ssed b

y

TBI

patients

’ fa

mily m

em

bers

2.8

0.7

80

0.7

8

1.3

0.3

83

0.8

9

em

otional

Inte

rvention s

um

vari

able

s:

1 =

never,

2 =

seld

om

, 3 =

occasio

nally,

4 =

oft

en,

5 =

alw

ays.

Com

pete

nce s

um

vari

able

s:

1 =

basic

com

pete

nce a

nd 2

= a

dvanced c

om

pete

nce;

SD

, sta

ndard

devia

tion;

Alp

ha,

Cro

nhnbach’s

alp

ha.

25

26

6 Discussion

6.1 ETHICALITY OF THE STUDY

The studies in the literature review were selected systematically and carefully using diverse databases. This study was carried out following good scientific practice. The study was planned, carried out and reported in an honest and detailed manner.

In the second phase of the study, research permits were acquired according to the policies of each organization and the covering letter told recipients that participation in the study is voluntary and the management of the replies is confidential so that an individual participant cannot be recognized. Written research permits were received from all hospitals. In addition, the covering letter included the contact information for the research team in case of any questions or comments (Appendix 2, 3). The anonymity of the participants was ensured by the questionnaires being returned anonymously so that it was not possible to recognize individual participants. The results of the study have been published in an honest manner according to good scientific practice. (Burns & Grove 2001, Polit & Beck 2012.)

6.2 RELIABILITY OF THE STUDY

The reliability of the literature review was supported by the determination of the research question and the inclusion and exclusion criteria together with the research team. In addition, several databases were utilized in the literature searches. The literature searches were made in co-operation with an informatician. The reliability was further enhanced by the obtainment of all studies. The studies were made into tabular form for the analysis and the progression of the process is illustrated in a figure (Figure 2). The inclusion and exclusion criteria for the studies were pretested with a few randomly picked original scientific studies. There are, however, some limitations to the literature review. Two researchers could carry out the search and selection of the studies, which promotes the reliability of the review. In this review the searches were made together with an informatician, but the selection of the studies was made by one researcher for resource reasons. The generalization of the results is affected by the small sample size in many of the studies. In addition, only a few of the studies were made from the nursing staff’s viewpoint. It is possible that some studies have been left out from the searches, as for quality verification reasons the term “research” was used as one defining search term. (Polit & Beck 2012.)

The validity of the questionnaire content was ensured by the previous systematic literature review concerning the support provided for TBI patients’ family members, as well as the team of experts’ panel and the piloting of the questionnaire by two members of staff with extensive work experience in nursing TBI patients and supporting their family members. Both the team of experts’ panel and the piloting found that the concepts covered the studied phenomenon sufficiently (Appendix 4). The experts suggested the addition of one statement and the modification of another, and these changes were carried out. Some limitations should be noted when interpreting and utilizing the results. The data were collected using a questionnaire designed for this study, in which nursing staff themselves evaluated how often they provided informational, emotional and practical support. It is

27

possible that they over- or underestimated the frequency of the support. In addition, it is important to take into consideration that a lot of items in the questionnaire are focused on what nurses do (e.g., I tell…). By scoring these items, nurses reported their activities. This can be seen as a report of more ‘objective’ activities of nurses that nurses can report because the items focus on issues that they can evaluate (what do I do). Other items focus on the effects that nurses generate by acting and performing their activities (e.g., I assure…). If nurses scored these items, they did not really or only score their activity itself, but the intention or effect of their activity. It is also possible that respondents answered according to what they thought were the ideal situation.

Although the study used a whole sample, the sample size is small which also affects the generalization of the results. The response rate (67%) was moderate, but it is not known who did not respond and this can also affect the generalization of the results. Furthermore, the survey was carried out among nursing staff in all the neurosurgical wards in all Finnish university hospitals; however, this may limit the international generalization of the results. (Burns & Grove 2001.)

The reliability and internal consistency of the questionnaire were assessed by factor analysis and in all categories of support (informational, emotional, practical) a five-factor solution was formed. The validity of the questionnaire content was ensured by calculating Cronbach’s alpha values; the values of the intervention sum variables varied between 0.54 and 0.92, and the values of the competence sum variables varied between 0.66 and 0.93 and the values were rather good. (Heo et al. 2005, Shyu et al. 2006, DeVellis 2012.) In addition, the reliability of the results was ensured by including in the study all Finnish university hospitals, where adult TBI patients are treated immediately after the injury. The sample can be considered to be representative, as it is a so-called whole sample, because the nursing staff of all neurosurgical wards in Finnish university hospitals were invited to participate in the study. (DeVellis 2012.)

6.3 DISCUSSION

Based on the literature review findings, it was stated that the support needed by family members can be divided into informational, emotional and practical support. A clear knowledge base gap was noted in previous research concerning neurosurgical nursing staff’s evaluations and competence about supporting TBI patients’ families.

The study produced new information about what providing support for TBI patients’ family members entails, how often nursing staff evaluated they provide informational, emotional and practical support for TBI patients’ family members, and what kind of competence is required by nursing TBI patients and supporting family members. Nursing staff evaluated that they provided support fairly often for family members in these categories.

Nursing staff members evaluated that informational support was most seldom offered to family members.The informational support needed by TBI patients’ family members was divided into information about the TBI patient’s symptoms, information about the TBI patient’s care, the quality of information, and information about the prognosis. According to the results, nursing staff evaluated that they most often informed TBI patients’ family members about symptom management (e.g., pain or epileptic seizure medication) and efficacy of treatment (e.g., treatment is assessed using a pulse oximeter and pain scale), whereas the prevention of secondary injuries was most seldom discussed (e.g., taking/monitoring blood tests). Family members, however, want to receive exact information about possible complications and the TBI patient’s prognosis (Wongvatunyu & Porter 2005, Verhaeghe et al. 2005a, 2005b, Verhaeghe et al. 2007, Falk et al. 2008, Arango-

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Lasprilla et al. 2010, Calvete & deArroyabe 2012). The individual informational needs of family members must be taken into account when giving information (Falk et al. 2008, Prachar et al. 2010, Puggina et al. 2012). Prachar et al. (2010) argued that TBI patients’ family members’ most important needs were: to have questions answered honestly, to be assured that the best possible care has been given to the patient, to know specific facts concerning the TBI patient’s progress, to know expected outcome and to know that the patient’s pain is being addressed. It is also important for family members to receive understandable and honest information once a day (Lam & Beaulieu 2004, Verhaeghe et al. 2007, Arango-Lasprilla et al. 2010, Roscigno et al. 2013). Lefebvre and Levert (2006) reported that TBI patients’ family members felt they received an insufficient amount of information. On the other hand, Verhaeghe and co-workers (2007) noted that telling family members exact values of, e.g., intracranial pressure may be confusing to them. It can be difficult for family members to understand the sudden changes in the TBI patient’s condition when the values suddenly worsen. In this study, nursing staff found that informing family members about the monitoring of intracranial pressure requires advanced competence. Previously, nursing staff have identified the prevention of secondary injuries and control of intracranial pressure as important research topics in nursing neuropatients (DiIorio et al. 2011). Nursing staff with a short work experience evaluated that they informed TBI patients’ family members about vital signs monitoring the most seldom, and also that this requires basic competence. Whereas informational support was evaluated to require the most advanced competence, and the nursing staff members with more than 21 years of work experience as a nursing staff member evaluated that informing family members about vital signs monitoring requires advanced competence. It is possible that the nursing staff with a short work experience consider vital signs monitoring as a basic technical skill. In contrast, those who have more than 21 years of work experience as a nursing staff member make broader analysis and interpretations when they tell TBI patients’ family members about monitoring vital signs.

These results are similar to the study by Watts et al. (2011), as they noted that nurses rated their level of knowledge regarding the examination of TBI patients’ physical condition as fairly good, whereas they found that their knowledge in guiding family members is weaker. Nursing staff can reassure TBI patient’s family members e.g. by telling why vital signs are monitored and not only by reporting medical parameters, which family members may not be able to interpret correctly. Family members need concrete and understandable information about TBI patients’ condition and their treatment in order to be reassured that the best care is provided. (Verhaeghe et al. 2007, Roscigno et al. 2013.) While Lavdaniti et al. 2011 argued that more educated nurses are more demand of themselves to provide higher informational support to the family members.

Emotional support was provided most often according the nursing staff’s evaluations. Emotional support entails taking family members’ emotions into account, caring and listening, and respecting. However, Arango-Lasprilla et al. (2010) stated that TBI patients’ family members reported emotional support to be the most frequently unmet needs. Providing emotional support for family members was seen as basic competence. However, Lefebvre et al. (2007) noted that nursing staff found it difficult to deal with difficult situations, e.g., they felt it was difficult to deal with TBI patients’ family members’ reactions when they had to break bad news. Nursing staff members’ age, education, length of work experience as a nursing staff member, and as a nursing staff member on a neurosurgical ward, were not connected to how often they provided emotional support for patients’ family members. Usually, the nursing staff member believed that they supported the family members of TBI patients in their grief; according to previous studies, family members may grieve for the TBI patient in a similar way to people who have lost a family member (Verhaeghe et al. 2005b). Nursing staff member evaluated that they most often took TBI patients’ family members’ individuality into account and respected them as well as, e.g.,

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they encouraged TBI patients’ family members when there was no hope left (Roscigno et al. 2013). Winstanley et al. (2006) stated that family members need support to maintain hope. Verhaeghe et al. (2005a, 2007, 2010a, 2010b) noted that TBI patients’ family members also want to understand what is happening to the TBI patient, and they also want their hope to be realistic and be protected from false hope (Puggina et al. 2012). On the other hand, nursing staff members evaluated that they most seldom dealt with difficult emotions expressed by TBI patients’ family members. Less than one-third of nursing staff members discussed feelings of guilt and anger with TBI patients’ family members. According to Jumisko et al. (2007), TBI patients’ family members felt that they didn’t receive enough help with their feelings. Also, Keenan and Joseph (2010) found out that to TBI patients’ family members it was important to be assured that negative feelings are common. Lefebvre et al. (2007) reported that nurses who had received training in facing family members’ difficult emotions felt more competent. Less than one-third of nursing staff members took into account TBI patients’ family members’ spiritual needs, however Puggina et al. (2012) stated that nursing staff members should encourage and support the spiritual needs of TBI patients’ family members, if necessary. Overall the provision of emotional support for TBI patients’ family members was evaluated as requiring basic competence, although almost half of the nursing staff thought that discussing feelings of anger and guilt with a TBI patient’s family members required advanced competence. It is possible that advanced competencies are often assessed as basic ones, because the complexity of the competence is unknown to the nursing staff. The results of the study indicate that this could be the case for at least some of the ‘basic’ competences, e.g., emotional support.

Meretoja et al. (2004) pointed out that nursing staff evaluated themselves most competent in the helping role (helping the patients to cope, providing individualized care). It is also known that technical competences or competences that are clearly seen as professional ones are often scored as more complex/advanced and more valued. Nursing interventions that can be conducted by uneducated caregivers are often seen as basic competences, e.g., comforting, giving emotional support, bathing, and feeding. However, the caregivers may need advanced competence, e.g., for facing feelings of guilt and anger of TBI patients’ family members or feeding TBI patients with swallowing problems. (Cowan et al. 2005, Defloor et al. 2006, Sapounzi-Krepia et al. 2006, Sapounzi-Krepia et al. 2008, Lavdaniti et al. 2011, Murphy & Carmine 2012.)

Practical support comprised supporting decision-making, promoting welfare, encouraging family members to participate in the TBI patient’s care, and co-operating with family members and counselling services. Liaison with TBI patients’ family members was the nursing intervention carried out most often according nursing staff members’ evaluations. For example, they reported to organize a chance to speak with the doctor or enabled flexible visiting hours. At the beginning of treatment in particular, family members want to spend as much time with the TBI patient as possible (Verhaeghe et al. 2010). Lam and Beaulieu (2004) noted that for the family members it was important that there is a waiting room near the TBI patient. The frequency of teaching TBI patients’ family members in daily activities varied according nursing staff’s evaluations. Nursing staff reported that they often taught family members to support independent functions, e.g., eating independently, but they seldom provided guidance with respect to helping with bathing when the TBI patient suffered from poor concentration. Keenan and Joseph (2010) found out that supporting nursing interventions such as putting cream on feet and wiping the mouth were specific activities that gave family members a sense of involvement (Fisher et al. 2008, Calvete & deArroyabe 2012). Choosing the right moment, the right nursing intervention, and supporting them in undertaking the intervention, increased the well-being and confidence in the family’s ability to become independent in caring for the TBI patient (Keenan & Joseph 2010). According to the findings, nursing staff reported they seldom offered TBI patients’ family members chances to take breaks or recreation, or help

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with sleeping arrangements, although this was considered to be basic competence. According to Keenan and Joseph (2010), nursing staff should acknowledge TBI patients’ family members’ need for rest, food and sleep. With respect to the background variables, registered nurses evaluated that they had liaison with family members more often than other professions. Verhaeghe and co-workers (2010a) noted that family members need someone whom they can blindly trust. Such a person makes family members feel less insecure and they are reassured that the TBI patient gets the best possible treatment. In addition, Puggina et al. (2012) argued that nursing staff are responsible for the job of teaching the TBI patient’s family members to constantly seek more participation from the family in the recovery of the patient. Nursing staff members evaluated that they seldom provided support for family members when TBI patients’ family members needed guidance in how to deal with the patient’s mood swings and the symptoms caused by TBI, e.g., by guiding family members how to prevent and predict aggressive behaviour. Pryor (2006), however, mentioned that nursing staff have different means of calming down an aggressive TBI patient by avoiding haste, debate and refusal. In addition, they aimed for short and to-the-point communication as well as trying to speak to the TBI patient in a gentle and calm manner. In the future it’s possible that TBI patients’ family members will be expected to participate more, because of a lack of health-care staff and resources. Furthermore, it’s imperative that nurses are competent enough to provide information and teaching for the family members. Lavdaniti et al. (2011) stated that nurses underestimated most of the family needs (informational, assurance, proximity). In addition Verhaeghe et al. (2005a) stated that the amount of experience relates negatively with the skill to consider the needs of family members.

6.4 CONCLUSIONS AND RECOMMENDATIONS

1. Family members want specific information about the condition and the reasons for particular treatments at least once a day from the doctor and nurses. Nursing staff members with little work experience reported that they give less information about patient’s condition e.g. vital signs to TBI patients’ family members. This should be taken into account when planning shifts so that there is enough competent nursing staff available at all times. 2. According previous studies nursing staff members can underestimate the emotional needs of family members. The nursing staff members with more extensive work experience reported that they most often provided emotional support for TBI patients’ family members when they had feelings of anger and guilt. These results should be taken into account when planning the orientation of new nursing staff and in-service training. 3. Nursing staff members evaluated that they seldom offered family members opportunities for refreshment and breaks. This may result from the lack of a resting space for family members in many hospitals. This should be taken into account when planning, e.g., renovations in hospitals. Family members want to be close to the TBI patient and spend a lot of time in the hospital, therefore adequate refreshment spaces are necessary for them. 4. Nursing staff members evaluated that they seldom guided family members in how to prevent TBI patients’ aggressive behaviour which, after all, is one of the most stressful symptoms from family members’ perspective. This should be taken into consideration when orienting new staff and in-service training about challenging behaviour could also help nursing staff to manage it.

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6.5 SUGGESTIONS FOR FURTHER RESEARCH

1. To examine with qualitative methods what kind of support (informational, emotional, practical) Finnish TBI patients’ family members need in order to cope in their difficult situation when their loved one is suffering from TBI. 2. To study the competence requirements of nursing staff members working on neurosurgical wards. 3. To test knowledge combined with an educational intervention because this offers the opportunity to investigate nursing staff’s competence in more detail. 4. To study with qualitative methods the quality of information, e.g., whether the information is, from the family members’ perspective, purposeful and appropriately timed, and what the family members feel the content should include. 5. To carry out an intervention study, where family members and nursing staff could practise facing difficult emotions together, which could produce important information about how nursing staff can provide emotional and practical support for TBI patients’ family members in the best possible way. 6. To examine the cultural differences in family members’ information needs and between nursing staff members with different cultural backgrounds. 7. To study how neuronurses cope with the lack of time and personnel in overcrowded neurosurgical wards.

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*Included also in systematic review

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sup

po

rt a

nd

pro

fess

ional

sup

po

rt.

Chro

nis

ter

et a

l. 2

01

0

US

A

The

asso

ciat

ion o

f st

ress

-co

pin

g

var

iab

les

to q

ual

ity o

f li

fe a

mo

ng

care

giv

ers

of

ind

ivid

ual

s w

ith

trau

mati

c b

rain

inju

ry

To

det

erm

ine

the

degre

e to

wh

ich

stre

ss-c

op

ing v

aria

ble

s co

ntr

ibute

to

qual

ity o

f li

fe a

mo

ng c

areg

ivers

of

ind

ivid

ual

s w

ith t

rau

mat

ic b

rain

inju

ry.

10

8 c

areg

iver

s

Surv

ey

The

full

mo

del

acc

ou

nte

d f

or

68

% o

f th

e var

iance

in Q

OL

;

care

giv

ing a

pp

rais

al,

per

ceiv

ed s

oci

al s

up

po

rt a

nd

fam

ily n

eed

s

rem

ained

sig

nif

icant

afte

r o

ther

stre

ss-c

op

ing v

aria

ble

s w

ere

par

tial

led

.

Kee

nan

& J

ose

ph 2

01

0

Can

ada

The

nee

ds

of

fam

ily m

em

ber

s o

f

sever

e tr

aum

atic

bra

in i

nju

ry

pat

ients

duri

ng c

riti

cal

and

acute

care

: A

qual

itat

ive

stud

y.

To

id

enti

fy t

he

nee

ds

exp

ress

ed

by

fam

ily m

em

ber

s as

pat

ients

wit

h

sever

e in

jury

pro

gre

ss t

hro

ug

h t

hei

r

reco

ver

y.

25

fam

ily m

em

ber

s

Qual

itat

ive

stud

y

Fam

ily m

em

ber

s id

enti

fied

a v

arie

ty o

f nee

ds

duri

ng t

he

acute

phas

e ho

spit

aliz

atio

n p

erio

d. A

t ti

me

1 t

her

e w

ere

4 m

ain

them

es t

hat

des

crib

ed t

he

traj

ecto

ry o

f th

e f

am

ilie

s’ e

xp

erie

nce

s:

get

ting t

he

new

s, u

nce

rtai

nty

, m

akin

g s

ense

of

the

new

s, m

ovin

g

on. A

t ti

me

2 t

hem

es o

f th

e fa

mil

y e

xp

erie

nce

incl

ud

ed

unce

rtai

nty

, lo

okin

g f

or

pro

gre

ss,

tran

siti

on a

nd

let

ting

go

/buil

din

g a

new

co

nnec

tio

n.

Co

rnw

ell

et a

l. 2

00

9

Aust

rali

a

Sup

po

rtin

g n

eed

s o

f yo

ung a

dult

s

wit

h a

cquir

ed b

rain

inju

ry d

uri

ng

tran

siti

on f

rom

ho

spit

al t

o h

om

e

To

exp

lore

the

avai

lab

ilit

y a

nd

per

ceiv

ed a

deq

uac

y o

f se

rvic

e

sup

po

rt f

or

yo

unger

peo

ple

wit

h A

BI

and

thei

r fa

mil

ies

in Q

uee

nsl

and

duri

ng t

he

transi

tio

n p

has

e fr

om

the

per

spec

tive

of

serv

ice

pro

vid

ers.

12

ser

vic

e p

rovid

ers

Qual

itat

ive

stud

y

Ser

vic

es i

ncl

ud

ed r

ehab

ilit

atio

n,

consu

ltancy,

ed

uca

tio

n a

nd

trai

nin

g,

and

pra

ctic

al a

nd

em

oti

onal

sup

po

rts.

Exis

ting b

arri

ers

to s

ervic

e p

rovis

ion w

ere

clust

ered

und

er t

hre

e key t

hem

es:

serv

ice

infr

ast

ruct

ure

, tr

ansi

tio

n s

up

po

rt,

and

tra

nsi

tio

n c

onte

xt.

Kre

uze

r et

al.

20

09

A p

reli

min

ary i

nves

tigat

ion o

f th

e

bra

in i

nju

ry f

am

ily i

nte

rven

tio

n:

Imp

act

on f

am

ily m

em

ber

s

US

A

To

eval

uat

e th

e b

enefi

ts o

f th

e B

rain

inju

ry f

am

ily i

nte

rven

tio

n f

or

fam

ilie

s

of

per

sons

wit

h a

cquir

ed b

rain

inju

ry

and

id

enti

fy f

acto

rs r

elat

ed t

o

outc

om

es.

79

fam

ilie

s

Inte

rventi

on s

tud

y

Bef

ore

and

aft

er t

reat

ment,

un

mar

ried

car

egiv

ers

rep

ort

ed m

ore

un

met

nee

ds

and

gre

ater

ob

stac

les

to s

ervic

es.

Po

st-t

reat

men

t

dif

fere

nce

s in

fam

ily m

em

ber

s’ p

sycho

logic

al d

istr

ess,

sati

sfac

tio

n w

ith l

ife

and

fu

nct

ionin

g w

ere

no

t id

enti

fied

.

Lefe

bvre

et

al.

20

08

Can

ada

Per

spec

tives

of

surv

ivo

rs o

f

trau

mati

c b

rain

inju

ry a

nd

their

care

giv

ers

on l

on

g-t

erm

so

cial

inte

gra

tio

n

To

do

cum

ent

the

rep

ercu

ssio

ns

of

TB

I o

n v

icti

ms’

lo

ng

-ter

m s

ocia

l

inte

gra

tio

n

(10

yea

rs p

ost

-tra

um

a) a

nd

the

contr

ibuti

on m

ade

by t

he

serv

ices

rece

ived

fro

m t

he

po

int

of

vie

w o

f

TB

I vic

tim

s and

fam

ily c

areg

iver

s.

22

ind

ivid

ual

s w

ho

had

sust

ained

a m

od

erat

e o

r

sever

e T

BI

and

21

fam

ily

care

giv

ers.

Qual

itat

ive

stud

y

The

resu

lts

sho

w t

hat

TB

I is

an e

xp

erie

nce

that

co

nti

nues

to

pre

sent

dif

ficult

ies,

ev

en 1

0 y

ears

aft

er t

he

acci

dent,

and

that

dif

fere

nt

bar

rier

s co

ntr

ibute

to

this

dif

ficult

y:

no

t go

ing b

ack

to

wo

rk,

dep

ress

ive

epis

od

es,

pro

ble

ms

in r

elat

ionsh

ips

and

seq

uel

ae.

Fam

ily c

areg

iver

s m

ust

hel

p T

BI

vic

tim

s co

nfr

on

t th

e

bar

rier

s in

thei

r p

ath.

2 /

5

To b

e co

nti

nu

ed

Ref

eren

ce

Aim

M

eth

od

an

d s

am

ple

F

ind

ing

s

Chan J

. 2

00

7

Car

ers

per

spec

tive

on r

esp

ite

for

per

sons

wit

h a

cquir

ed b

rain

in

jury

Aust

rali

a

To

ad

dre

ss t

he

lack

of

dat

a o

n r

esp

ite

care

and

peo

ple

wit

h a

cquir

ed b

rain

inju

ry f

rom

the

per

spec

tive

of

care

rs.

85

car

ers

Surv

ey

The

char

acte

rist

ics

of

care

rs w

ere

consi

stent

wit

h t

he

rese

arch

lite

ratu

re o

n r

esp

ite

and

acq

uir

ed b

rain

inju

ry,

wit

h c

arer

s b

eing

mai

nly

fem

ale

and

ther

e b

ein

g a

rel

iance

on a

n i

nfo

rmal

net

wo

rk t

o a

ssis

t in

the

care

. C

arer

s al

so r

epo

rted

that

car

ing

pre

ven

ted

them

fro

m o

bta

inin

g g

ain

ful

em

plo

ym

ent.

Sever

al

fact

ors

wer

e si

gnif

icantl

y a

sso

cia

ted

wit

h t

he

use

of

resp

ite,

thes

e w

ere

care

rs’

sin

gle

mar

ital

sta

tus;

and

the

per

son w

ith

acq

uir

ed b

rain

inju

ry’s

sev

erit

y o

f d

isab

ilit

y, h

igh l

evel

of

dep

end

ency a

nd

nu

mb

er o

f d

ays

spent

in a

co

ma.

Car

ers

also

rep

ort

ed o

ther

fac

tors

that

mig

ht

infl

uence

them

to

use

res

pit

e

and

they i

den

tifi

ed t

hei

r ex

pec

tati

ons

of

resp

ite.

Char

les

N e

t al

. 2

00

7

Fam

ilie

s li

vin

g w

ith a

cquir

ed b

rain

inju

ry: A

mu

ltip

le f

am

ily g

rou

p

exp

erie

nce

Aust

rali

a

To

des

crib

e m

ult

i-fa

mil

y g

rou

p w

ork

wit

h f

am

ilie

s w

ith a

par

ent

wit

h a

n

acq

uir

ed b

rain

inju

ry

Six

fam

ilie

s

Qual

itat

ive

and

quan

tita

tive

rese

arch

met

ho

ds,

wit

h p

re-,

po

st-

gro

up

and

3-m

onth

fo

llo

w-

up

mea

sure

s o

f in

div

idual

,

coup

le a

nd

fam

ily

funct

ionin

g.

Fam

ilie

s w

ere

uneq

uiv

oca

lly p

osi

tive

abo

ut

thei

r p

arti

cip

atio

n i

n

the

gro

up

wit

h b

enefi

ts i

nclu

din

g r

educe

d f

eeli

ng

s o

f sh

am

e an

d

iso

lati

on,

pro

vis

ion o

f m

utu

al s

up

po

rt,

incr

ease

d u

nd

erst

and

ing

of

bra

in i

nju

ry,

shar

ing o

f d

iffi

cult

exp

erie

nce

s and

mo

vem

ent

fro

m b

lam

e to

co

mp

ass

ion.

Har

t J.

et

al. 2

007

Rac

ial

dif

fere

nce

s in

car

egiv

ing

pat

tern

s, c

areg

iver

em

oti

onal

funct

ion,

and

so

urc

es

of

em

oti

onal

sup

po

rt f

oll

ow

ing t

rau

mat

ic b

rain

inju

ry

US

A

To

co

mp

are

whit

e and

Afr

ican

Am

eric

an c

areg

iver

s o

f p

eop

le w

ith

mo

der

ate

to s

ever

e tr

aum

atic

bra

in

inju

ry (

TB

I) r

egar

din

g c

areg

ivin

g

pat

tern

s, e

mo

tio

nal

fu

nct

ion a

nd

lif

e

sati

sfac

tio

n,

and

pre

ferr

ed s

up

po

rts.

25

6 c

areg

iver

s

Bri

ef S

ym

pto

m I

nvento

ry–

18

, S

atis

fact

ion

Wit

h L

ife

Sca

le.

Pro

spec

tive,

ob

serv

atio

nal

stud

y;

1,

2,

or

5 y

ears

po

st-

TB

I.

Rac

es d

iffe

red

as

to k

insh

ip p

atte

rns,

wit

h m

ore

wh

ite

care

giv

ers

incl

ud

ing s

po

use

s and

mo

re A

fric

an A

mer

icans

incl

ud

ing “

oth

er r

elat

ives

”. A

fric

an A

mer

ican

s sp

ent

sig

nif

icantl

y m

ore

tim

e in

dir

ect

car

egiv

ing,

and

rep

ort

ed m

ore

dep

ress

ion. W

hit

es

wer

e m

ore

lik

ely t

o u

se p

rofe

ssio

nal

ser

vic

es

for

em

oti

onal

sup

po

rt.

Acr

oss

rac

es, T

BI

care

giv

er e

mo

tio

nal

hea

lth i

s aff

ecte

d b

y t

he

funct

ional

level

of

the

surv

ivo

r. A

fric

an A

mer

ican c

areg

iver

s

may b

e at

ris

k o

f w

ors

e em

oti

onal

co

nse

quence

s d

ue

to w

ors

e

surv

ivo

r o

utc

om

es,

yet

may u

nd

eruti

lize

pro

fess

ional

serv

ices

.

Lefe

bvre

H.

et a

l. 2

00

7

Inte

rdis

cip

linar

y f

am

ily

inte

rventi

on p

rogra

m: A

par

tner

ship

am

on

g h

ealt

h

pro

fess

ional

s, t

rau

mat

ic i

nju

ry

pat

ients

, and

car

egiv

ing r

elat

ives

Can

ada

To

inves

tigate

the

del

iver

y o

f ca

re

afte

r tr

aum

atic

bra

in i

nju

ry a

nd

the

typ

e o

f re

lati

on

ship

that

dev

elo

ps

bet

wee

n t

he

fam

ily a

nd

the

pro

fess

ional

s.

17

hea

lth p

rofe

ssio

nal

s

The

stud

y m

etho

do

log

y

was

mix

ed:

a q

uanti

tati

ve

ques

tio

nnai

re,

wh

ile

their

exp

erie

nce

and

lea

rnin

g

wer

e d

ocu

men

ted

in s

em

i-

guid

ed,

qual

itat

ive

inte

rvie

ws

cond

uct

ed

bef

ore

and

aft

er t

rain

ing.

The

resu

lts

sho

w t

hat

the

trai

nin

g s

tim

ula

ted

per

sonal

and

pro

fess

ional

refl

ecti

ve

tho

ug

ht

in p

arti

cip

ants

and

fo

ster

ed t

he

forg

ing o

f an i

nte

rdis

cip

linar

y p

artn

ersh

ip. T

he

trai

nin

g h

ad a

po

siti

ve

imp

act

on

co

mm

unic

atio

n b

etw

een p

rofe

ssio

nal

s and

wit

h t

he

fam

ilie

s and

hel

ped

to

dev

elo

p a

sen

se o

f se

lf-e

ffic

acy

am

on

g h

ealt

h p

rofe

ssio

nal

s.

3 /

5

To b

e co

nti

nu

ed

Ref

eren

ce

Aim

M

eth

od

an

d s

am

ple

F

ind

ing

s

McC

abe

et a

l. 2

00

7

Co

mm

unit

y r

einte

gra

tio

n f

oll

ow

ing

acq

uir

ed b

rain

inju

ry

20

07

Can

ada

To

eval

uat

e th

e in

terv

enti

on

s and

stra

tegie

s u

sed

to

enab

le t

ransi

tio

n

fro

m a

cute

car

e o

r p

ost

-acu

te

rehab

ilit

atio

n t

o t

he

com

mu

nit

y

foll

ow

ing b

rain

inju

ry.

Lit

erat

ure

rev

iew

Fro

m 3

8 s

tud

ies

eval

uate

d

for

this

revie

w,

only

one

RC

T w

as f

ou

nd

.

That

RC

T p

rovid

ed m

od

erat

e ev

iden

ce t

hat

beh

avio

ura

l

man

agem

ent,

co

up

led

wit

h c

areg

iver

ed

uca

tio

n,

did

no

t hel

p t

o

imp

rove

care

giv

er b

urd

en.

Ro

dger

s M

L.

et a

l.2

00

7

Ad

apti

ng m

ult

iple

-fam

ily g

roup

trea

tment

for

bra

in a

nd

sp

inal

co

rd

inju

ry i

nte

rventi

on d

evel

op

ment

and

pre

lim

inar

y o

utc

om

es

US

A

The

purp

ose

of

the

pre

sent

field

-

init

iate

d d

evel

op

men

t p

roje

ct w

as

to

adap

t a

fam

ily p

sycho

educa

tio

n

mo

del

, m

ult

iple

-fam

ily g

roup

trea

tment

(MF

GT

), f

or

per

sons

wit

h

bra

in a

nd

sp

inal

co

rd i

nju

ry a

nd

thei

r

fam

ilie

s.

27

surv

ivo

rs a

nd

28

care

giv

ers.

Sem

i-

stru

cture

d i

nte

rvie

ws

and

focu

s gro

up

s w

ere

cond

uct

ed w

ith

par

tici

pan

ts.

Quanti

tati

ve

and

qual

itat

ive

meth

od

s

Surv

ivo

rs r

epo

rted

a d

ecre

ase

in d

epre

ssiv

e sy

mp

tom

s an

d

anger

exp

ress

ion t

ow

ard

oth

ers

as w

ell

as a

n i

ncr

ease

in l

ife

sati

sfac

tio

n.

Car

egiv

ers

rep

ort

ed a

sig

nif

icant

red

uct

ion i

n

burd

en. T

he

them

es d

eriv

ed f

rom

the

qual

itat

ive

anal

ysi

s

add

ress

ed t

he

no

rmal

izat

ion o

f th

e ca

regiv

ing e

xp

erie

nce

,

imp

ort

ance

of

soci

aliz

atio

n,

imp

rovem

ent

in a

var

iety

of

cop

ing

skil

ls,

and

ed

uca

tio

n a

bo

ut

the i

nju

ries

.

Ro

tond

i A

J. e

t al

. 2

00

7

A q

ual

itat

ive

nee

ds

asse

ssm

en

t o

f

per

sons

who

have

exp

erie

nce

d

trau

mati

c b

rain

inju

ry a

nd

their

pri

mar

y f

am

ily c

areg

iver

s

US

A

To

det

erm

ine

the

exp

ress

ed n

eed

s o

f

per

sons

wit

h t

rau

mat

ic b

rain

inju

ry

(TB

I) a

nd

thei

r p

rim

ary f

am

ily

care

giv

ers.

80

per

sons

wit

h T

BI,

wit

h

an a

ver

age

tim

e si

nce

thei

r

mo

st s

ever

e T

BI

of

5.8

yea

rs,

and

85

pri

mar

y

sup

po

rt p

erso

ns.

Sem

i-st

ruct

ure

d i

nte

rvie

ws

wit

h c

onte

nt-

anal

yti

c

tech

niq

ues

to

id

enti

fy

resp

ond

ents

’ nee

ds.

Res

po

nd

ents

des

crib

ed t

hei

r n

eed

s via

phas

es

that

par

alle

led

tran

siti

ons

in s

etti

ngs,

tre

atm

ents

and

res

po

nsi

bil

itie

s (i

.e.,

acu

te

care

, in

pat

ient

rehab

ilit

atio

n,

retu

rn h

om

e, a

nd

liv

ing i

n t

he

com

mu

nit

y).

Pro

min

ent

them

es

duri

ng i

np

atie

nt

phase

s in

clu

ded

pro

vid

er q

ual

ity,

em

oti

onal

su

pp

ort

, an

d u

nd

erst

and

ing t

he

inju

ries

. P

rom

inent

them

es

du

ring t

he

latt

er 2

phas

es i

ncl

ud

ed

guid

ance

, li

fe p

lan

nin

g,

com

munit

y i

nte

gra

tio

n,

and

beh

avio

ura

l

and

em

oti

onal

iss

ues

.

Murr

ay H

. et

al.

20

06

Ass

essm

ent

of

fam

ily n

eed

s

foll

ow

ing a

cquir

ed b

rain

inju

ry i

n

Sas

katc

hew

an

Can

ada

The

obje

ctiv

e w

as t

o l

earn

wh

at t

he

fam

ily m

em

ber

s o

f in

div

idual

s w

ith

acq

uir

ed b

rain

inju

ry (

AB

I) p

erce

ived

as i

mp

ort

ant

nee

ds

and

to

what

exte

nt

thes

e nee

ds

are

bei

ng m

et.

66

ind

ivid

ual

s w

ho

car

e

for

som

eone

wit

h a

n A

BI

and

who

rec

eive

serv

ice

fro

m t

he

Sas

kat

chew

an

So

uth

AB

I O

utr

each T

eam

com

ple

ted

the

Fam

ily

Nee

ds

Ques

tio

nnai

re

(FN

Q).

The

mo

st i

mp

ort

ant

nee

ds

wer

e re

late

d t

o h

ealt

h i

nfo

rmat

ion

.

Mo

st n

eed

s p

erce

ived

as

un

met

wer

e re

late

d t

o e

mo

tio

nal

sup

po

rt.

Car

egiv

ers

ind

icat

ed t

hat

havin

g h

onest

, ac

cura

te,

com

pre

hen

sive

info

rmat

ion r

egar

din

g t

he

AB

I su

rviv

or

is

imp

ort

ant.

Resp

ond

ents

als

o i

nd

icat

ed t

hat

ap

pro

xim

ately

hal

f

of

the

nee

ds

have

go

ne

un

met

or

only

par

tly m

et. T

his

stu

dy

hig

hli

ghts

the

imp

ort

ance

fo

r se

rvic

e p

rovid

ers

to a

sses

s fa

mil

y

nee

ds

in o

rder

to

min

imiz

e d

istr

ess

in c

aregiv

ers,

mai

nte

nan

ce

of

the

wel

l-b

eing o

f w

ho

m i

s in

tegra

l in

the

sup

po

rt o

f th

e

per

son w

ith A

BI.

Win

stan

ley J

. 2

00

6

Ear

ly i

nd

icat

ors

and

co

ntr

ibuto

rs t

o

psy

cho

logic

al d

istr

ess

in r

elat

ives

duri

ng r

ehab

ilit

atio

n f

oll

ow

ing

sever

e tr

aum

atic

bra

in i

nju

ry

Aust

rali

a

To

dev

elo

p a

mult

ivar

iate

mo

del

of

the

dynam

ic i

nte

ract

ions

am

ong k

ey

var

iab

les

asso

ciat

ed w

ith r

elat

ive

dis

tres

s and

dis

rup

ted

fam

ily

funct

ionin

g a

fter

tra

um

atic

bra

in

inju

ry (

TB

I).

A r

elat

ive

sam

ple

(p

aren

ts,

spo

use

s, c

lose

oth

ers;

N =

13

4)

Ques

tio

nnar

e

The

over

all

mo

del

acc

ou

nte

d f

or

sub

stan

tial

pro

po

rtio

ns

of

the

var

iance

in p

sycho

logic

al

dis

tres

s an

d f

am

ily f

unct

ionin

g.

Imp

ort

antl

y, t

he

dis

tres

s exp

erie

nce

d b

y r

elat

ives

was

no

t d

ue

to

the

dir

ect

imp

act

of

the

neuro

beh

avio

ura

l im

pai

rmen

ts,

but

the

effe

ct o

f th

ese

imp

airm

ents

was

med

iate

d b

y t

he

deg

ree

of

com

mu

nit

y p

arti

cip

atio

n a

chie

ved

by t

he

per

son w

ith

TB

I.

4 /

5

Ref

eren

ce

Aim

M

eth

od

an

d s

am

ple

F

ind

ing

s

Ro

tond

i A

J. e

t al

. 2

00

5

An i

nte

ract

ive W

eb-b

ased

inte

rventi

on f

or

per

sons

wit

h T

BI

and

thei

r fa

mil

ies.

Use

and

eval

uati

on b

y f

em

ale

sig

nif

icant

oth

ers

US

A

To

ass

ess

the

feas

ibil

ity o

f p

rovid

ing

in-h

om

e ad

junct

ive

and

sup

po

rtiv

e

serv

ices

fo

r p

erso

ns

wit

h t

rau

mat

ic

bra

in i

nju

ry (

TB

I) a

nd

thei

r fa

mil

ies

via

a w

ebsi

te.

19

fam

ilie

s w

ere

pro

vid

ed

wit

h a

cces

s to

the

web

site

inte

rventi

on f

or

6 m

onth

s.

Ad

ult

wo

men w

ho

wer

e

the

sig

nif

ican

t o

ther

s o

f

adult

mal

es

wit

h m

od

erat

e-

to-s

ever

e T

BI.

Val

ue

and

eas

e o

f use

of

the

web

site

. E

ach p

arti

cip

ant’

s usa

ge

of

the

web

site

was

auto

mat

ical

ly t

rack

ed i

ncl

ud

ing e

ach p

age

vis

ited

, ti

me

of

day,

and

tim

e sp

ent

on t

he

pag

e. F

em

ale

sig

nif

icant

oth

ers

fou

nd

the

web

site

to

be

val

uab

le a

nd

eas

y t

o

use

, an

d u

sed

it

thro

ug

ho

ut

the 6

-mo

nth

per

iod

. T

he

onli

ne

sup

po

rt g

roup

was

the

mo

st u

sed

and

val

ued

mo

du

le.

Fam

ily

care

giv

ers

wil

l u

se W

eb-b

ased

inte

rventi

ons

to h

elp

mee

t th

eir

nee

ds

for

soci

al s

up

po

rt,

info

rmat

ion,

and

guid

ance

fo

llo

win

g

the

retu

rn h

om

e o

f p

erso

ns

wit

h T

BI.

Sin

nakar

up

pan

et

al.

20

05

Hea

d i

nju

ry a

nd

fam

ily c

arer

s: a

pil

ot

stud

y t

o i

nvest

igat

e an

inno

vat

ive

com

mu

nit

y-b

ased

educa

tio

nal

pro

gra

mm

e fo

r fa

mil

y

care

rs a

nd

pat

ients

UK

To

eval

uat

e th

e im

pac

t o

f an

educa

tio

nal

pro

gra

mm

e fo

r fa

mil

y

care

rs a

nd

thei

r hea

d-i

nju

red

rel

ativ

es

in r

educi

ng c

arer

and

pat

ient

psy

cho

logic

al d

istr

ess

and

im

pro

vin

g

thei

r co

pin

g a

bil

ity.

The

stud

y c

om

pri

sed

exp

erim

enta

l and

co

ntr

ol

sam

ple

s ea

ch w

ith c

arer

(N

= 5

0)

and

pat

ient

(N =

49

)

gro

up

s. A

ll g

roup

s w

ere

asse

ssed

pre

- an

d p

ost

-

inte

rventi

on a

nd

at

3-

mo

nth

fo

llo

w-u

p. T

he

pat

ient

sam

ple

was

furt

her

asse

ssed

usi

ng c

og

nit

ive

mea

sure

s.

Ther

e w

as

evid

ence

of

red

uct

ion i

n p

sych

olo

gic

al d

istr

ess

in t

he

exp

erim

enta

l ca

rer

gro

up

fo

llo

win

g t

he

educa

tio

nal

inp

ut,

bu

t

thes

e re

sult

s w

ere

no

t st

atis

tical

ly s

ignif

ican

t. H

ow

ever

, th

e

exp

erim

enta

l p

atie

nt

po

pula

tio

n a

t fo

llo

w-u

p a

sses

smen

t

sho

wed

sta

tist

ical

ly s

ignif

ican

t im

pro

vem

ents

.

Ver

hae

ghe

et a

l. 2

00

5

Str

ess

and

co

pin

g a

mo

ng f

am

ilie

s

of

pat

ients

wit

h t

rau

mat

ic b

rain

inju

ry:

a re

vie

w o

f t

he

lite

ratu

re

20

05

Bel

giu

m

To

str

uct

ure

the

avai

lab

le i

nfo

rmat

ion

on t

he

psy

cho

log

ical

rea

ctio

ns

of

fam

ily m

em

ber

s co

nfr

onte

d w

ith

trau

mati

c b

rain

inju

ry.

Lit

erat

ure

rev

iew

The

level

of

stre

ss e

xp

erie

nce

d b

y t

he

fam

ily m

em

ber

s o

f

pat

ients

wh

o h

ave

trau

mat

ic b

rain

inju

ry i

s su

ch t

hat

pro

fess

ional

in

terv

enti

on i

s ap

pro

pri

ate,

even

aft

er 1

0-1

5 y

ear

s.

No

t th

e se

ver

ity o

f th

e in

jury

but

the

nat

ure

of

the

inju

ries

det

erm

ines

the

level

of

stre

ss.

Par

tner

s ex

per

ience

mo

re s

tres

s

than

par

ents

. Y

oun

g f

am

ilie

s w

ith l

ittl

e so

cial

sup

po

rt,

finan

cial

,

psy

chia

tric

and

/or

med

ical

pro

ble

ms

are

the

mo

st v

uln

erab

le.

The

bet

ter

fam

ily m

em

ber

s ca

n c

op

e w

ith t

he

situ

atio

n,

the

bet

ter

the

pat

ient’

s re

cover

y. A

mo

ng o

ther

thin

gs,

co

pin

g i

s

infl

uence

d b

y p

rofe

ssio

nal

sup

po

rt.

5 /

5

Ref

eren

ce

Aim

M

eth

od

an

d s

am

ple

F

ind

ing

s

Wel

ls e

t al

. 2

00

5

Lif

e sa

tisf

acti

on a

nd

dis

tres

s in

fam

ily c

aregiv

ers

as r

elat

ed t

o

spec

ific

beh

avio

ura

l changes

afte

r

trau

mati

c b

rain

inju

ry

Can

ada

To

pre

dic

t th

e lo

ng

-ter

m o

utc

om

e o

f

tho

se c

arin

g f

or

fam

ily m

em

ber

s w

ho

hav

e su

stai

ned

a t

rau

mati

c b

rain

inju

ry (

TB

I).

f72

ad

ult

surv

ivo

rs a

nd

fam

ily m

em

ber

s

A m

ult

ivar

iate

ap

pro

ach,

self

-ad

min

iste

red

ques

tio

nnai

re p

ackages

wer

e co

llec

ted

Fam

ily m

em

ber

s nee

d i

nfo

rmat

ion a

bo

ut

sym

pto

ms

like

irri

tab

ilit

y, p

oo

r im

puls

e co

ntr

ol,

lac

k o

f em

pat

hy o

n t

he

par

t o

f

the

TB

I p

atie

nt,

ho

stil

ity,

defi

cit

s in

the

abil

ity t

o p

lan a

nd

to

fore

see

futu

re c

onse

quence

s.

Fam

ily m

em

ber

s gener

ally

rep

ort

ed h

igher

level

s o

f sa

tisf

acti

on

than

dis

sati

sfac

tio

n w

ith t

hei

r ca

regiv

ing r

ole

. T

he

typ

e o

f

neu

rob

ehavio

ura

l d

efic

it a

nd

the

app

roac

hes

tak

en t

o c

op

e w

ith

stre

ss h

ad s

pec

ific

eff

ects

on e

ach d

imensi

on o

f ca

regiv

er

outc

om

e

Wo

ng

vat

un

yu S

. et

al.

20

05

Mo

ther

s’ e

xp

erie

nce

of

hel

pin

g

yo

ung a

dult

s w

ith t

rau

mati

c b

rain

inju

ry

Thai

land

To

des

crib

e m

oth

ers’

exp

erie

nce

of

hel

pin

g y

oun

g a

dult

s w

ith t

rau

mat

ic

bra

in i

nju

ry (

TB

I).

A c

onvenie

nce

sam

ple

of

par

tici

pan

ts f

rom

sup

po

rt

gro

up

s fo

r p

aren

ts o

f

yo

ung a

dult

s w

ith

TB

I

A d

esc

rip

tive

phen

om

eno

logic

al

met

ho

d

The

five

pheno

mena

of

the

mo

ther

s’ e

xp

erie

nce

s w

ere:

reco

nnec

ting m

y c

hil

d’s

bra

in,

consi

der

ing m

y c

hil

d’s

safe

ty,

mak

ing o

ur

lives

as

no

rmal

as

po

ssib

le,

dea

ling w

ith o

ur

big

ges

t

pro

ble

m,

and

ad

vo

cati

ng f

or

my c

hil

d.

Knea

fsey &

Gaw

tho

rpe

20

04

Hea

d i

nju

ry:

Lo

ng

-ter

m

conse

quence

s fo

r p

atie

nts

and

fam

ilie

s and

im

pli

cati

ons

for

nurs

es

UK

To

stu

dy t

he

imp

act

of

hea

d i

nju

ry

and

po

st-i

nju

ry d

isab

ilit

ies

on

pat

ients

’ an

d f

am

ilie

s’ l

ives

.

Lit

erat

ure

rev

iew

In

the

acute

phas

e ac

cura

te a

sses

smen

t and

inte

rpre

tati

on o

f

neu

rolo

gic

al

stat

us

is e

ssenti

al t

o p

red

ict

pat

ient

outc

om

es,

as

wel

l as

tell

ing p

ote

nti

al e

ffec

ts o

f ra

ised

intr

acra

nia

l p

ress

ure

asso

ciat

ed w

ith t

rachea

l su

ctio

nin

g.

Fam

ily m

em

ber

s nee

d

info

rmat

ion a

bo

ut

TB

I p

atie

nts

’ b

ehavio

ura

l p

rob

lem

s, a

git

ati

on

and

aggre

ssio

n,

med

icat

ion a

nd

its

sid

e ef

fect

s, p

hysi

cal

sym

pto

ms

such

as

lim

b w

eak

nes

s, p

aral

ysi

s, s

tiff

nes

s, d

istu

rbed

gai

t, c

ontr

actu

res,

bal

ance

im

pai

rmen

t, s

enso

ry i

mp

airm

ent

and

imp

aire

d p

rop

rio

cep

tio

n,

as w

ell

as i

nco

nti

nen

ce,

and

co

gnit

ive

pro

ble

ms

rela

tin

g t

o c

once

ntr

ati

on.

As

nurs

es p

lay a

n i

mp

ort

ant

role

in b

oth

the

acute

and

lo

ng

-ter

m

care

and

sup

po

rt o

f th

ose

who

hav

e su

ffer

ed a

hea

d i

nju

ry,

it i

s

vit

al t

hat

they a

re a

war

e o

f th

e w

ide-r

angin

g n

eed

s w

ith w

hic

h

pat

ients

and

fam

ilie

s m

ay p

rese

nt.

Lei

th K

H.

et a

l. 2

00

4

Exp

lori

ng t

he

serv

ice

nee

ds

an

d

exp

erie

nce

s o

f p

erso

ns

wit

h T

BI

and

thei

r fa

mil

ies:

the

So

uth

Car

oli

na

exp

erie

nce

US

A

To

lea

rn w

hat

par

tici

pan

ts p

erce

ive

thei

r se

rvic

e nee

ds

to b

e an

d w

her

e

they e

xp

erie

nce

ser

vic

e gap

s in

the

exis

tin

g s

yst

em

of

TB

I se

rvic

es.

Fo

ur

focu

s gro

up

s

Qual

itat

ive

con

tent

anal

ysi

s

Qual

itat

ive

con

tent

anal

ysi

s re

vea

led

over

whel

min

g c

onse

nsu

s

regar

din

g t

he

nee

d f

or

(1)

earl

y, c

onti

nuo

us,

co

mp

rehensi

ve

serv

ice

del

iver

y;

(2)

info

rmat

ion/e

duca

tio

n;

(3)

form

al/

info

rmal

advo

cacy;

(4)

emp

ow

erm

ent

of

per

sons

wit

h T

BI/

fam

ilie

s; a

nd

(5)

hu

man c

on

nec

ted

ness

/so

cial

bel

ongin

g.

Appendix 2

INFORMATION SHEET FOR EXPERTS Dear expert

The earlier research on the competence of neurosurgical nursing staff in support of traumatic

brain injury (TBI) patients’ family members is fragmental both in Finland and internationally.

Support of a TBI patient demands a wide range of basic and advanced skills from the nursing

staff. The brain injury affects the patient’s ability to function and think, their emotional life,

behaviour and cognition. According to research, the care of a TBI patient is beneficial and the

recovery is good. The research on competence has been done from the perspective of critical

care and the critically ill patients. However research on the competence of nursing staff’s

support of the patient’s family members in the hospital ward has not been done either in Finland

or internationally.

The purpose of this research is to find out how nursing staff evaluate their basic and advanced

competence in supporting the TBI patient’s family members in the neurosurgical ward

immediately after the injury. In the revision of the questionnaire you have valuable information

about the reality of the items and about which items are part of a nursing staff’s basic

competence and which require advanced competence that can be obtained through work

experience. Your participation is voluntary. Your information will be kept strictly confidential

and reported so that a single respondent’s answers cannot be identified.

The main concepts of this research are the informational support of a TBI patient’s family

members, emotional support and practical support as well as the basic and advanced

competence of nursing staff members.

For the research we will be selecting nursing staffs in neurosurgical wards from all the university

hospitals in Finland (Helsinki, Turku, Tampere, Kuopio and Oulu) who treat TBI patients and

support their family members. I ask you to evaluate the appropriateness of the enclosed

questionnaire’s content. I hope that you have the opportunity to participate in the common

discussion with other experts at a time that will be determined collectively. The discussion will

take approximately one hour.

This is my dissertation research for my Doctoral Degree in Health Care. The research is

supervised by Professor Hannele Turunen, Head of the Department of Nursing Science at the

University of Eastern Finland, Professor Kerttu Tossavainen from the University of Eastern

Finland and Professor of Neurosurgery Juha Jääskeläinen from Kuopio University Hospital.

Thank you for your co-operation,

Kirsi Coco,

MSc, PhD student

E-mail: [email protected]

Adress: Soihtutie 10a 01670 Vantaa, Finland

Tel: +35840-8215057

Appendix 3

INFORMATION SHEET FOR RESPONDENTS Dear respondent

In addition to an extensive basic competence, nursing staff need advanced skills in supporting traumatic

brain injury (TBI) patients in the neurosurgical ward. There have been some studies on basic and

advanced competence in supporting TBI patients’ family members from the nursing staff’s perspective. A

TBI is a trauma that occurs in the brain; the trauma is associated with any kind of loss of consciousness,

memory loss, and changes in body function or a neurological symptom that indicates local brain damage.

In addition to weakened vital functions, the patient always has different sensomotoric, cognitive and

emotional disorders.

The purpose of this research is to find out how the nursing staff evaluates their competence in supporting

the family members of a TBI patient in a neurosurgical ward immediately after the patient’s injury. The

results of this study may be useful in contemplating the need for staff’s supplementary training, and in

addition my research gives valuable information for nursing interventions in supporting a TBI patient’s

family members. Permission for this research has been obtained from your hospital. Your participation is

voluntary. Your information will be kept strictly confidential and reported so that a single

respondent’s/hospital’s answers cannot be identified.

The main concepts of this research are the informational support of a TBI patient’s family members,

emotional support and practical support as well as the basic and advanced competence of nursing staff

members.

For the research we will be selecting nursing staffs in neurosurgical wards from all the university

hospitals, in total six neurosurgical wards, which treat TBI patients and support their family members.

The research sample is a so-called overall sample, because all of the nurses and practical nurses working

in the neurosurgical wards in question will be chosen. I ask you to complete the enclosed questionnaire

and to return it by the end of July 2010 with a stamped envelope addressed to the researcher/contact

person.

This is my dissertation research for my Doctoral Degree in Health Care. The research is supervised by

Professor Hannele Turunen, Head of the Department of Nursing Science at the University of Eastern

Finland, Professor Kerttu Tossavainen from the University of Eastern Finland and Professor of

Neurosurgery Juha Jääskeläinen from Kuopio University Hospital.

Thank you for your co-operation,

Kirsi Coco,

MSc, PhD student

E-mail: [email protected]

Adress: Soihtutie 10a 01670 Vantaa, Finland

Tel: +35840-8215057

Appendix 4

THE BASIC AND ADVANCED COMPETENCE OF NURSING STAFF IN SUPPORTING A TBI

PATIENT’S FAMILY MEMBERS EVALUATION FORM

Answer the following questions by circling the correct choice in your opinion, or by writing the correct answer in

the space provided. I hope that you will comment on the actual questionnaire if something comes to mind.

1. The amount of items in the questionnaire

1 too many

2 reasonable

3 not enough

2. Answering the questionnaire was

1 easy, why?___________________________________________

2 difficult, why?________________________________________

3. Were all the questions comprehensible?

1 yes

2 no

4. If you answered the previous question with 2 (=no), can you explain which of the questions

weren’t comprehensible in your opinion and why?

___________________________________________________________________________

___________________________________________________________________________

5. Was there something lacking in the questionnaire that would’ve had significant value?

1 no

2 yes, what?___________________________________________

_____________________________________________________

6. Were the answer options clear in your opinion?

1 yes

2 no, why?_____________________________________________

7. How much time did it take to answer the questions?_________________________________

8. Do you have any ideas for improvement or anything else to say about the questionnaire?_________

____________________________________________________________________________

(You may continue your answer on the other side of the form.)

9. Evaluate the covering letter. Was there enough information and what would you like to change?

______________________________________________________________________________

THANK YOU FOR YOUR FEEDBACK!

A

p

p

e

n

d

i

x

1 /

11

Ap

pen

dix

5

To b

e co

nti

nu

ed

Qu

esti

on

nai

re

Bac

kgro

un

d v

aria

ble

s

/_/_

/_/

1. G

end

er

1 F

emal

e

2 M

ale

2. A

ge

____

___y

ears

3. E

du

cati

on

1

Pra

ctic

al n

urs

e

2 R

egi

ste

red

nu

rse

(co

llege

of

nu

rsin

g

3 R

egi

ste

red

nu

rse

(un

iver

sity

of

app

lied

sci

ence

)

4. W

ork

exp

erie

nce

as

nu

rsin

g st

aff

mem

ber

1 le

ss t

han

3 y

ears

2 3

-10

year

s

3 1

1-2

0 y

ears

4 2

1 y

ears

or

mo

re

5. W

ork

exp

erie

nce

as

nu

rsin

g st

aff

mem

ber

in c

urr

ent

wo

rk u

nit

1 le

ss t

han

3 y

ears

2 3

-10

year

s

3 1

1-2

0 y

ears

4 2

1 y

ears

or

mo

re

2 /

11

To b

e co

nti

nu

ed

In t

he

follo

win

g s

ecti

on

we

ha

ve li

sted

item

s w

hic

h h

ave

to

do

wit

h t

he

sup

po

rtin

g o

f a

TB

I pa

tien

t’s

fam

ily m

emb

ers.

Cir

cle

the

op

tio

n w

hic

h d

escr

ibes

yo

ur

beh

avi

ou

r. In

ad

dit

ion

, eva

lua

te w

het

her

yo

ur

beh

avi

ou

r is

pa

rt o

f b

asi

c o

r a

dva

nce

d c

om

pet

ence

an

d p

ut

a c

ross

(X)

in t

he

corr

ect

spa

ce.

If t

ha

t b

eha

vio

ur

is n

ot

pa

rt o

f yo

ur

wo

rk, y

ou

ma

y ch

oo

se t

he

op

tio

n ’d

oes

no

t a

ffec

t m

e’.

Info

rmat

ion

al s

up

po

rtin

g o

f a

TB

I pat

ien

t’s

fam

ily

me

mb

ers

I pro

vid

e n

urs

ing

inte

rven

tio

ns

as f

ollo

ws

Co

mp

ete

nce

A

lway

s O

fte

n

Occ

asio

nal

ly

Seld

om

N

ever

D

oes

no

t

affe

ct m

e

Bas

ic

Ad

van

ced

6. I

tel

l a T

BI p

atie

nt’

s fa

mily

mem

ber

s th

at I’

m o

bse

rvin

g

the

pat

ien

t’s

stat

e so

th

at t

he

dec

line

in t

he

pat

ien

t’s

con

dit

ion

can

be

pre

ven

ted

5

4

3

2

1

0

7. I

tel

l a T

BI p

atie

nt’

s fa

mily

mem

ber

s h

ow

th

e le

vel o

f

con

scio

usn

ess

is m

on

ito

red

5

4

3

2

1

0

8. I

tel

l a T

BI p

atie

nt’

s fa

mily

mem

ber

s w

hy

the

pat

ien

t’s

bre

ath

ing

is o

bse

rved

5

4

3

2

1

0

9. I

tel

l a T

BI p

atie

nt’

s fa

mily

mem

ber

s w

hy

the

pat

ien

t’s

blo

od

cir

cula

tio

n is

mo

nit

ore

d

5

4

3

2

1

0

10

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

wh

y I r

egu

larl

y

chec

k th

e p

atie

nt’

s p

up

il re

acti

on

to

ligh

t

5

4

3

2

1

0

11

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

wh

y I m

on

ito

r th

e

pat

ien

t’s

bo

dy

tem

per

atu

re

5

4

3

2

1

0

3 /

11

To b

e co

nti

nu

ed

Info

rmat

ion

al s

up

po

rtin

g o

f a

TB

I pat

ien

t’s

fam

ily

me

mb

ers

I pro

vid

e n

urs

ing

inte

rven

tio

ns

as f

ollo

ws

Co

mp

ete

nce

A

lway

s O

fte

n

Occ

asio

nal

ly

Seld

om

N

ever

D

oes

no

t

affe

ct m

e

Bas

ic

Ad

van

ced

12

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

that

I gi

ve a

fev

er-

red

uci

ng

med

icin

e if

th

e p

atie

nt’

s te

mp

erat

ure

is e

leva

ted

5

4 3

2

1

0

13

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

abo

ut

no

n-m

edic

al

mea

ns

of

low

eri

ng

bo

dy

tem

per

atu

re

5

4 3

2

1

0

14

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

that

I’m

tak

ing

care

of

the

pat

ien

t’s

flu

id t

her

apy

acco

rdin

g to

my

resp

on

sib

iliti

es

5

4 3

2

1

0

15

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

abo

ut

the

sym

pto

ms

cau

sed

by

a ri

se in

intr

acra

nia

l pre

ssu

re

5

4 3

2

1

0

16

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

wh

y n

ause

a is

mo

nit

ore

d

5

4 3

2

1

0

17

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

wh

y th

e tr

eatm

ent

of

anae

mia

is im

po

rtan

t

5

4 3

2

1

0

18

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

that

th

e fa

mily

’s

view

po

int

is t

aken

into

co

nsi

der

atio

n w

hen

pre

par

ing

a ca

re

pla

n

5

4 3

2

1

0

19

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

wh

en r

apid

ch

ange

in t

he

pat

ien

t’s

con

dit

ion

occ

urs

5

4 3

2

1

0

4 /

11

To b

e co

nti

nu

ed

Info

rmat

ion

al s

up

po

rtin

g o

f a

TB

I pat

ien

t’s

fam

ily m

emb

ers

I pro

vid

e n

urs

ing

inte

rven

tio

ns

as f

ollo

ws

Co

mp

ete

nce

A

lway

s O

fte

n

Occ

asio

nal

ly

Seld

om

N

ever

D

oes

no

t

affe

ct m

e

Bas

ic

Ad

van

ced

20

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

th

at t

he

inju

ry m

ay

cau

se d

iffi

cult

ies

in u

nd

erst

and

ing

spee

ch

5 4

3 2

1

0

21

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

that

th

e p

atie

nt

nee

ds

en

ou

gh t

ime

to e

xpre

ss t

hem

selv

es

5 4

3 2

1

0

22

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

that

th

e in

jury

may

cau

se a

ggre

ssio

n

5 4

3 2

1

0

23

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

wh

y b

lood

sug

ar

has

to b

e r

egu

larl

y m

onitore

d

5 4

3 2

1

0

24

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

wh

y t

he

sym

pto

ms

of

hyp

oxi

a h

ave

to b

e re

gula

rly

mo

nit

ore

d

5 4

3 2

1

0

25

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

wh

y t

he o

xyg

en

satu

ration o

f b

loo

d is m

onitore

d r

eg

ula

rly w

ith a

pu

lse

oxim

ete

r

5 4

3 2

1

0

26

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

wh

y a

TBI p

atie

nt’

s

elec

tro

lyte

val

ues

are

mo

nit

ore

d

5 4

3 2

1

0

27

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

wh

y b

loo

d

coag

ula

tio

n v

alu

es a

re m

on

ito

red

5 4

3 2

1

0

28

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

abo

ut

the

sym

pto

ms

rela

ted

to

bra

in o

edem

a

5 4

3 2

1

0

5 /

11

To b

e co

nti

nu

ed

Info

rmat

ion

al s

up

po

rtin

g o

f a

TBI p

atie

nt’

s fa

mily

mem

ber

s I p

rovi

de

nu

rsin

g in

terv

enti

on

s as

fo

llow

s C

om

pet

en

ce

A

lway

s O

fte

n

Occ

asio

nal

ly

Seld

om

N

ever

D

oes

no

t

affe

ct m

e

Bas

ic

Ad

van

ced

29

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

abo

ut

the

sym

pto

ms

rela

ted

to

lim

b p

aral

ysis

5 4

3 2

1

0

30

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

ho

w h

and

sw

ellin

g is

pre

ven

ted

5 4

3 2

1

0

31

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

ho

w p

neu

mo

nia

is

pre

ven

ted

5 4

3 2

1

0

32

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

abo

ut

dif

fere

nt

pai

ns

rela

ted

to

inju

ry

5 4

3 2

1

0

33

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

that

an

ele

vate

d

po

siti

on

dec

reas

es

intr

acra

nia

l pre

ssu

re

5 4

3 2

1

0

34

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

that

I ca

lm a

res

tles

s

pat

ien

t in

ord

er t

o p

reve

nt

the

rise

of

intr

acra

nia

l pre

ssu

re

5 4

3 2

1

0

35

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

wh

y th

e ai

rway

s an

d

oxy

gen

su

pp

ly a

re a

tte

nd

ed t

o d

uri

ng

an e

pile

pti

c se

izu

re

5 4

3 2

1

0

36

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

wh

y d

iaze

pam

is

give

n f

or

an e

pile

pti

c se

izu

re

5 4

3 2

1

0

6 /

11

To b

e co

nti

nu

ed

Info

rmat

ion

al s

up

po

rtin

g o

f a

TB

I pat

ien

t’s

fam

ily m

emb

ers

I pro

vid

e n

urs

ing

inte

rven

tio

ns

as f

ollo

ws

Co

mp

ete

nce

A

lway

s O

fte

n

Occ

asio

nal

ly

Seld

om

N

ever

D

oes

no

t

affe

ct m

e

Bas

ic

Ad

van

ced

37

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

that

I gi

ve

par

acet

amo

l fo

r th

e p

atie

nt’

s h

ead

ach

es

5 4

3 2

1

0

38

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

that

th

e ef

fica

cy o

f

the

trea

tmen

t is

ass

esse

d u

sin

g d

iffe

ren

t in

stru

men

ts (

e.g.

pu

lse

oxi

met

er, s

ph

ygm

om

ano

met

er, p

ain

sca

les)

5 4

3 2

1

0

39

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

ho

w n

urs

ing

has

affe

cte

d t

he

pat

ien

t’s

reco

very

5 4

3 2

1

0

40

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

abo

ut

the

nu

rsin

g

pra

ctic

es o

n t

he

war

d

5 4

3 2

1

0

41

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

wh

at t

he

con

dit

ion

of

the

pat

ien

t is

acc

ord

ing

to t

he

resp

on

sib

iliti

es a

lloca

ted

to

me

5 4

3 2

1

0

42

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

that

th

e

do

cum

enta

tio

n a

bo

ut

the

TBI p

atie

nt’

s tr

eatm

ent

is

pro

du

ced

tak

ing

into

acc

ou

nt

the

TBI p

atie

nt’

s o

pin

ion

5 4

3 2

1

0

43

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers,

tre

atm

ent

is g

ive

n

acco

rdin

g to

th

e re

spo

nsi

bili

ties

allo

cate

d t

o m

e

5 4

3 2

1

0

44

. I a

ssu

re a

TB

I pat

ien

t’s

fam

ily m

emb

ers

that

info

rmat

ion

I giv

e t

hem

do

es n

ot

con

trad

ict

the

info

rmat

ion

giv

en b

y

oth

ers

(e.g

. th

e at

ten

din

g p

hys

icia

n, o

ther

sta

ff)

5 4

3 2

1

0

7 /

11

To b

e co

nti

nu

ed

Emo

tio

nal

su

pp

ort

ing

of

a TB

I pat

ien

t’s

fam

ily m

em

ber

s I p

rovi

de

nu

rsin

g in

terv

enti

on

s as

fo

llow

s C

om

pet

en

ce

A

lway

s O

fte

n

Occ

asio

nal

ly

Seld

om

N

ever

D

oes

no

t

affe

ct m

e

Bas

ic

Ad

van

ced

45

. I s

upport

th

e f

am

ily m

em

bers

of

a T

BI patie

nt

in t

heir g

rief

5 4

3 2

1

0

46

. I d

iscuss f

eelin

gs w

ith t

he f

am

ily m

em

bers

of

a T

BI

patient

5 4

3 2

1

0

47

. I t

ake

into

acc

ou

nt

fam

ily m

emb

ers’

sp

irit

ual

nee

ds

5 4

3 2

1

0

48

. I t

reat

a T

BI p

atie

nt’

s fa

mily

mem

ber

s w

ith

res

pec

t 5

4 3

2

1

0

49

. I g

uid

e a

TBI p

atie

nt’

s fa

mily

mem

ber

s ta

kin

g in

to

acco

un

t th

eir

ind

ivid

ual

ity

5 4

3 2

1

0

50

. I d

iscu

ss f

eelin

gs o

f an

ger

wit

h t

he

fam

ily m

emb

ers

of

a

TBI p

atie

nt

5 4

3 2

1

0

51

. I d

iscu

ss f

eelin

gs o

f gu

ilt w

ith

th

e fa

mily

mem

ber

s o

f a

TBI p

atie

nt

5 4

3 2

1

0

52

. I d

irec

t th

e fa

mily

mem

ber

s o

f a

TBI p

atie

nt

to a

cri

sis

nu

rse

5 4

3 2

1

0

53

. I li

ste

n t

o t

he

con

cern

s o

f th

e fa

mily

mem

ber

s o

f a

TBI

pat

ien

t

5 4

3 2

1

0

54

. I a

sk t

he

fam

ily m

emb

ers

wh

eth

er t

hey

are

co

pin

g 5

4 3

2

1

0

8 /

11

To b

e co

nti

nu

ed

Emo

tio

nal

su

pp

ort

ing

of

a TB

I pat

ien

t’s

fam

ily m

em

ber

s I p

rovi

de

nu

rsin

g in

terv

enti

on

s as

fo

llow

s C

om

pet

en

ce

A

lway

s O

fte

n

Occ

asio

nal

ly

Seld

om

N

ever

D

oes

no

t

affe

ct m

e

Bas

ic

Ad

van

ced

55

. I m

ain

tain

th

e h

op

e o

f th

e fa

mily

mem

ber

s o

f a

TBI

pat

ien

t w

ith

ou

t gi

vin

g fa

lse

ho

pe

5 4

3 2

1

0

56

. I in

tera

ct w

ith

th

e fa

mily

mem

ber

s a

TBI p

atie

nt

wh

en

ther

e is

no

ho

pe

left

5 4

3 2

1

0

57

. I g

uid

e th

e fa

mily

mem

ber

s o

f a

TBI p

atie

nt

in p

rep

arin

g

for

the

futu

re

5 4

3 2

1

0

58

. I r

eass

ure

th

e fa

mily

mem

ber

s o

f a

TBI p

atie

nt

5 4

3 2

1

0

59

. I s

eek

a q

uie

t p

lace

fo

r ta

lkin

g w

ith

fam

ily m

emb

ers

5 4

3 2

1

0

60

. I c

reat

e a

safe

atm

osp

her

e fo

r ta

lkin

g w

ith

th

e fa

mily

mem

ber

s o

f a

TBI p

atie

nt

5 4

3 2

1

0

Pra

ctic

al s

up

po

rtin

g o

f a

TBI p

atie

nt’

s fa

mily

mem

ber

s 5

4

3

2

1

0

61

. I d

iscu

ss w

ith

fam

ily m

emb

ers

a TB

I pat

ien

t’s

sym

pto

ms

that

aff

ect

the

pat

ien

t’s

abili

ty t

o c

op

e w

ith

dai

ly a

ctiv

itie

s

5 4

3 2

1

0

62

. I t

eac

h a

TB

I pat

ien

t’s

fam

ily m

emb

ers

wit

h m

ovi

ng

wh

en t

he

pat

ien

t h

as b

alan

ce p

rob

lem

s

5 4

3 2

1

0

63

. I t

eac

h f

amily

mem

ber

s h

ow

to

tea

ch a

TB

I pat

ien

t to

take

car

e o

f h

im/h

erse

lf (

e.g.

to

eat

ind

epen

den

tly)

5 4

3 2

1

0

9 /

11

To b

e co

nti

nu

ed

Pra

ctic

al s

up

po

rtin

g o

f a

TBI p

atie

nt’

s fa

mily

mem

ber

s I p

rovi

de

nu

rsin

g in

terv

enti

on

s as

fo

llow

s C

om

pet

en

ce

A

lway

s O

fte

n

Occ

asio

nal

ly

Seld

om

N

ever

D

oes

no

t

affe

ct m

e

Bas

ic

Ad

van

ced

64

. I g

uid

e fa

mily

mem

ber

s w

ith

res

pec

t to

eat

ing

wh

en a

TBI p

atie

nt

has

sw

allo

win

g p

rob

lem

s

5 4

3 2

1

0

65

. I t

eac

h a

TB

I pat

ien

t’s

fam

ily m

emb

ers

ho

w t

o a

ssis

t w

ith

eati

ng

wh

en t

he

pat

ien

t su

ffer

s fr

om

pro

ble

ms

car

ryin

g o

ut

such

act

ivit

ies

5 4

3 2

1

0

66

. I t

eac

h a

TB

I pat

ien

t’s

fam

ily m

emb

ers

ho

w t

o a

ssis

t th

e

pat

ien

t in

, e.g

., d

ress

ing

wh

en t

he

pat

ien

t is

su

ffer

ing

fro

m

lack

of

init

iati

ve

5 4

3 2

1

0

67

. I p

rovi

de

guid

ance

fo

r a

TBI p

atie

nt’

s fa

mily

mem

ber

s

wit

h r

esp

ect

to h

elp

ing

the

pat

ien

t w

ith

bat

hin

g w

hen

th

e

TBI p

atie

nt

suff

ers

fro

m p

oo

r co

nce

ntr

atio

n

5 4

3 2

1

0

68

. I t

eac

h a

TB

I pat

ien

t’s

fam

ily m

emb

ers

to u

se a

ids

(e.g

.,

wal

ker,

wh

eelc

hai

r) w

hen

th

e p

atie

nt

is s

uff

erin

g fr

om

, e.g

.,

mem

ory

loss

5 4

3 2

1

0

69

. I t

eac

h a

TB

I pat

ien

t’s

fam

ily m

emb

ers

ho

w t

o s

up

po

rt

the

pat

ien

t’s

ind

epen

den

t fu

nct

ion

ing

5 4

3 2

1

0

70

. I t

eac

h a

TB

I pat

ien

t’s

fam

ily m

emb

ers

that

th

e b

rain

inju

ry m

ay c

ause

sle

ep

dis

turb

ance

s

5 4

3 2

1

0

71

. I t

eac

h a

TB

I pat

ien

t’s

fam

ily m

emb

ers

ho

w t

o a

llevi

ate

the

pat

ien

t’s

sym

pto

ms

such

as

mu

scu

lar

spas

tici

ty

5 4

3 2

1

0

10

/ 1

1

To b

e co

nti

nu

ed

Pra

ctic

al s

up

po

rtin

g o

f a

TBI p

atie

nt’

s fa

mily

mem

ber

s I p

rovi

de

nu

rsin

g in

terv

enti

on

s as

fo

llow

s C

om

pet

en

ce

A

lway

s O

fte

n

Occ

asio

nal

ly

Seld

om

N

ever

D

oes

no

t

affe

ct m

e

Bas

ic

Ad

van

ced

72

. I t

eac

h a

TB

I pat

ien

t’s

fam

ily m

emb

ers

ho

w t

o a

llevi

ate

nau

sea

5 4

3 2

1

0

73

. I a

rran

ge f

or

a TB

I pat

ien

t’s

fam

ily m

emb

ers

to h

ave

the

op

po

rtu

nit

y to

res

t

5 4

3 2

1

0

74

. I o

ffer

a T

BI p

atie

nt’

s fa

mily

mem

ber

s th

e ch

ance

to

hav

e

a b

reak

(e.

g., v

isit

a c

afet

eria

or

go o

ut)

5 4

3 2

1

0

75

. I e

nco

ura

ge a

TB

I pat

ien

t’s

fam

ily m

emb

ers

to t

hin

k

abo

ut

them

selv

es t

oo

5 4

3 2

1

0

76

. I h

elp

a T

BI p

atie

nt’

s fa

mily

mem

ber

s w

ith

sle

epin

g

arra

nge

men

ts

5 4

3 2

1

0

77

. I t

ell

a TB

I pat

ien

t’s

fam

ily m

emb

ers

abo

ut

the

op

po

rtu

nit

ies

to e

at a

t th

e h

osp

ital

5 4

3 2

1

0

78

. I t

eac

h f

amily

mem

ber

s h

ow

to

try

to

pre

ven

t ag

gres

sive

beh

avio

ur

wh

en t

he

TBI c

ause

s th

e p

atie

nt

to h

ave

a sh

ort

tem

per

5 4

3 2

1

0

79

. I t

eac

h f

amily

mem

ber

s to

cal

l an

agg

ress

ive

pat

ien

t b

y

nam

e

5 4

3 2

1

0

80

. I t

eac

h f

amily

mem

ber

s to

an

tici

pat

e a

TBI p

atie

nt’

s

aggr

essi

ve b

ehav

iou

r w

hen

th

e p

atie

nt

suff

ers

fro

m m

oo

d

swin

gs

5 4

3 2

1

0

11

/ 1

1

Pra

ctic

al s

up

po

rtin

g o

f a

TBI p

atie

nt’

s fa

mily

me

mb

ers

I p

rovi

de

nu

rsin

g in

terv

en

tio

ns

as f

ollo

ws

Co

mp

ete

nce

A

lway

s O

ften

O

ccas

ion

ally

Se

ldo

m

Nev

er

Do

es n

ot

affe

ct m

e

Bas

ic

Ad

van

ced

81

. I t

each

a T

BI p

atie

nt’

s fa

mily

mem

ber

s th

at m

ain

tain

ing

a ca

lm

envi

ron

men

t al

levi

ate

s re

stle

ssn

ess

5

4

3

2

1

0

82

. I t

each

a T

BI p

atie

nt’

s fa

mily

mem

ber

s th

at b

ein

g p

rese

nt

may

alle

viat

e re

stle

ssn

ess

5

4

3

2

1

0

83

. I t

each

fam

ily m

em

ber

s th

at I

con

sid

er a

TB

I pat

ien

t’s

un

iqu

e

situ

atio

n w

hen

pla

nn

ing

thei

r ca

re

5

4

3

2

1

0

84

. I in

form

a T

BI p

atie

nt’

s fa

mily

me

mb

ers

abo

ut

soci

al s

erv

ices

(e.g

., p

hys

ioth

erap

ist,

sp

eech

th

erap

ist,

so

cial

wo

rker

)

5

4

3

2

1

0

85

. I c

all a

TB

I pat

ien

t’s

fam

ily m

emb

ers

abo

ut

chan

ges

in t

he

TBI

pat

ien

t’s

con

dit

ion

5

4

3

2

1

0

86

. I in

clu

de

a TB

I pat

ien

t’s

fam

ily m

em

ber

s in

pla

nn

ing

the

pat

ien

t’s

dis

char

ge f

rom

ho

spit

al

5

4

3

2

1

0

87

. I a

rran

ge f

lexi

ble

vis

itin

g h

ou

rs f

or

a TB

I pat

ien

t’s

fam

ily

me

mb

ers,

if n

eed

ed

5

4

3

2

1

0

88

. I c

oo

rdin

ate

a TB

I pat

ien

t’s

tran

sfer

to

an

oth

er c

are

un

it o

r

ho

me

in c

on

sult

atio

n w

ith

fam

ily m

em

ber

s

5

4

3

2

1

0

89

. I a

rran

ge f

or

a TB

I pat

ien

t’s

fam

ily m

em

ber

s to

hav

e a

chan

ce

to s

pea

k w

ith

th

e at

ten

din

g p

hys

icia

n

5

4

3

2

1

0

THA

NK

YO

U!



isbn 978-952-61-1317-3

Publications of the University of Eastern FinlandDissertations in Health Sciences

The study examined what

supporting traumatic brain injury

(TBI) patients’ family members

entails and how often nursing staff

provide support for TBI patients’

family members. Additionally,

the aim was to find out what kind

of nursing competence (basic/

advanced) is needed to support

TBI patients’ family members on

neurosurgical wards. TBI in one

individual affects the health of the

whole family.

dissertatio

ns | 205 | K

irsi C

oco

| Supporting Traum

atic Brain Injury P

atients’ Fam

ily Mem

bers

Kirsi CocoSupporting Traumatic Brain

Injury Patients’ Family Members


Kirsi Coco

Supporting Traumatic Brain Injury Patients’ Family MembersNeurosurgical Nurses’ Evaluations

Supporting Traumatic Brain Injury Patients’ Family Members · Practical support involved...

Documents

Transcript of Supporting Traumatic Brain Injury Patients’ Family Members · Practical support involved...