Becoming a Successful Researcher: Becoming a Successful Researcher: Overcoming Obstacles and Overcoming Obstacles and Optimising Opportunities Optimising Opportunities

Ann-Louise CaressAnn-Louise CaressProfessor of NursingProfessor of NursingUniversity of Manchester and University of Manchester and University Hospital of South Manchester NHSFTUniversity Hospital of South Manchester NHSFTann.caress@manchester.ac.ukann.caress@manchester.ac.uk

2013

1886 Staff Nurse (Renal)

1988 RA Manchester (Karen Luker)

1996

PhD awarded, Liverpool- funded by DH nursing research studentship (Lesley Degner, Liz Scott)

1994-1997

1998 Returned to Manchester as Lecturer

2007 INVOLVE Advisory Group Member

Research: Research career began in 1988, as a research assistant. Work focuses on living with and

management of long-term conditions, especially renal and respiratory problems, with particular interests in patient/carer needs/experiences;

patient and public involvement and health information/patient education

2009Promoted to Professor

1982 Commenced training at UoM (Jean McFarlane)

1989RA Liverpool (Karen Luker); first paper published

Lecturer, Liverpool

Married Gary

1999First grant as PI, £250K (Ashley Woodcock)

2010 Executive roles for American Thoracic Society and ICCHNR

2012 NICE Evidence Advisory Committee

2001-2003

Joint appointment (Christie Hospital)

£2million Asthma UK Centre grant (Co-I; PPI co-lead); £1.6million NIHR HTA grant (Co-I; qualitative lead)

2003 £335K BUPA Foundation (Asthma Lay Educators, Martyn Partridge)

2004 Promoted to Senior Lecturer

2008 Took up figure skating!

Joint appointment at UHSM

201425th WeddingAnniversary!

BLF ‘Outstanding Patient Care in the Community’ Award

Degner LF, Davison BJ, Sloan JA, Mueller B (1998) Development of a Scale to Measure Information Needs in Cancer Care Journal of Nursing Measurement 6 (2) 137-153

‘The divine root conceives and the spring breaks forth’ Wu Cheng’en 吳承恩

Related Work - AsthmaRelated Work - Asthma

• Information needs and decisional role preferences (DH/Asthma UK)• Lay-led self-management education (BUPA Foundation)• Computer-based communication aid for Somali patients with limited

English (EPSRC funded PhD with Computer Science)• Nurses’ views on patient participation in treatment decisions (Astra-

Zeneca)• Group CBT in severe asthma - feasibility study (AUK) • Women’s experiences in Oman (PhD)• Detecting and appropriately managing ‘at risk’ asthma status in

primary care, ARRISA-2 (NIHR HTA Programme Grant)

Related Work – COPD

• Patients’ and carers’ experiences of long-term oxygen therapy (PhD)

• Health promotion – patient and carer perceptions (UoM)• Fatigue PROM development (GlaxoSmithKline initially)• Patients’ experiences and perceptions of specialist palliative care • Safe oxygen use – perceptions of patients and healthcare

professionals (MAHSC)• Nursing sensitive outcome indicators (BTS/PhD)• Symptom perceptions, information needs and decisional role

preferences (GlaxoSmithKline)

Related Work – Other Respiratory Conditions

• Respiratory conditions (general) – information needs, attitudes and concerns re H1N1 ‘swine flu’ (DH – pandemic priority response funding)

• Interstitial lung disease – information needs and decisional role preferences (MRes)

• Chronic cough – patient experiences and descriptors (MPhil)• Chronic pulmonary aspergillosis – health-related quality of life

(Fungal Infection Trust)• Lung cancer – development and feasibility testing of an intervention

for a ‘symptom cluster’ (NCRI; Marie Curie Cancer Care)• Cystic fibrosis – development of PROM for use during

exacerbations (PhD, Switzerland)

Related Work – Other Conditions• Community palliative care – referral processes (PhD, DH funded)• Atopic dermatitis – parents’ information needs and decisional role

preferences (medical post-graduate trainee project)• Cleft lip and palate – parents’ experiences (MRC-funded PhD with Dentistry)• Vasculitis – patient knowledge and experience of treatment pathway (GM

CLAHRC)• Information exchange in stroke (PhD)• Dilated cardiomyopathy – self care and health-related quality of life (PhD)• Patient and clinician perceptions/experiences of palliative medicine

outpatient clinics (medical post-graduate trainee project)• Systemic lupus erythematosus – patients’ experiences in Kenya (PhD)• Pelvic vein incompetence – characterisation study (patient experience of

symptoms); case control study; intervention study (GM CLAHRC; PhD; NIHR RfPB)

• Vein harvesting for CABG – laboratory/clinical/patient-reported outcomes of different methods of harvesting veins (PhD – NIHR)

• The process of discharge from an Acute Medicine Unit (PhD – NIHR)

Related Work - Renal• CKD – comparison of patients’, GPs’ and renal specialists’ views of

referral and management options (GM CLAHRC)• CAPD – patients’ experiences of encapsulating peritoneal sclerosis

(PhD; internationally unique study)• ESRD – access to specialist palliative care services (medical

postgraduate trainee project)• Home Haemodialysis – patient-initiated variation in regimen (MRes)• Haemodialysis – Health related quality of life in Saudi Arabia (PhD) • Haemodialysis – Health related quality of life vs biochemical

markers (PhD)

COPD: Symptom Perceptions, COPD: Symptom Perceptions, Information Needs and Decisional Information Needs and Decisional

Role PreferencesRole Preferences• Two phase study

• Phase 1: Qualitative design; semi-structured, audio recorded interviews; 60 patients; thematic analysis

• Phase 2: Development and preliminary testing of questionnaires, all based on ‘paired comparisons’ approaches

Main SymptomsMain Symptoms

• Breathlessness• Sputum production and accompanying cough• Anxiety, fear and panic• Nocturnal waking• Impact on activities of daily living• Tiredness

(descending order of frequency)

Day A* Day D*Is congested with mucus

Is congested with mucus

Is feeling anxious Is not feeling anxiousIs having disturbed sleep during the night because of their chest

Is not having disturbed sleep during the night because of their chest

Is breathless only on exertion

Is slightly breathless during rest

Is able to do all of the tasks they had planned for the day

Is not able to do any of the tasks they had planned for the day because of their chest

Weighting of SymptomsWeighting of Symptoms(Conjoint Analysis – Discrete Choice Experiment)(Conjoint Analysis – Discrete Choice Experiment)

Core Information NeedsCore Information Needs• Current progress and likely future outcome of the condition• Effect of COPD on the body• Current medications• Different/new therapies • Understanding current symptoms and what they mean • Symptom management • Practical information to help maintain health • Role of smoking in COPD• Smoking cessation• Identifying and responding to disease exacerbations

(NB Not in priority order)

Prioritising Topics of Information Prioritising Topics of Information (Thurstone Scaling) (Thurstone Scaling)

From each of the following pairs, please circle the one that is more important for you to know:

1. Information about what my condition is and what it does to my body8. Information about the stages of my condition, what to expect next and the long term outlook for me

3.Information about the various treatments available for my condition, and if and when they would be right for me9. Information to help me recognise if my condition is getting worse, what action I can take myself and when I should get help

Decisional Role Preference (Vignettes after Degner et al 1997, using

Coombs’ Unfolding Theory) ACTIVEA. I Prefer To Make The Final Selection About Which Treatment I Will

Receive B. I Prefer To Make The Final Selection Of My Treatment After

Seriously Considering My Doctor’s Opinion

COLLABORATIVEC. I Prefer That My Doctor And I Share Responsibility For Deciding

Which Treatment Is Best For Me

PASSIVED. I Prefer That My Doctor Makes The Final Decision About Which

Treatment Will Be Used, But Seriously Considers My OpinionE. I Prefer To Leave All Decisions Regarding My Treatment To My

Doctor

Cognitive Impairment in People Cognitive Impairment in People with COPDwith COPD

• User reference group to establish relevance/priority

• Underlying mechanism

• Impact on self-management

Acoustic Monitoring of Inhaler Technique

NIHR: NIHR: www.nihr.ac.ukNorth West Research Design Service (RDS): North West Research Design Service (RDS):

http://www.rds-nw.nihr.ac.uk/http://www.rds-nw.nihr.ac.uk/

“My research focuses on living with and management of long-term

conditions, especially renal and respiratory problems, with particular

interests in patient/carer needs/experiences; patient and public

involvement and health information/patient education”

INVOLVE: http://www.invo.org.uk/INVOLVE: http://www.invo.org.uk/