Hotspot Siblings - Findings from co-creative parent ...
Transcript of Hotspot Siblings - Findings from co-creative parent ...
Prim. Priv.-Doz. Dr. Johannes Fellinger, Mag. Anna Hofstätter,
MMag. Alexandra Eder, MSc and Mag. Daiva Müllegger-Treciokaite,
Maria Lehner
Institute for Neurology of Senses and Language
Hospital of St. John of God, Linz-Austria
Hotspot Siblings - Findings from co-creative parent-professional workshops in Upper Austria
Summary
► background
► Objectives
► Participants
► Methodologies
► Thematical priorities
► Results
– qualitatively
– Quantitatively (incl. evaluation)
► Discussion
Initial Situation
Background:
►Children who are deaf or hard of hearing have significantly more mental health problems than children of the general population
►Parents of a child who is deaf or hard of hearing have special challenges and also need social and psychological support and a professional framework for exchange
Objectives
► „Co-creative Workshop“ between parents and professionals were established to strengthen parents’ abilities to create a healthy family climate and enhance adaptive skills in order to prevent mental health problems and to increase quality of life
Methods
► Planning phase
– Preparation of potential theoretical and practical content of a
workshop in cooperation with parents and professionals
– Preparation of a 3-part seminar series, each 3 hours
► Implementation phase
– Content of the workshops determined by the participants.
– Process-oriented work attitude
– Workshop schedule:
individual self reflection time - Input phase - discussion phase -
period of reflection
► Evaluation
– Each workshop meeting was evaluated immediately and 8 weeks
after via email. final discussion after presenting results.
Workshop proceedings –
individual self reflection time
► Self-reflection: Questionnaires for self-reflection on: Burnout tendencies, quality of life, self-efficacy, well-being
► Exchange round of entrained (2. & 3. meeting)
► Reflection questionnaires: What could I take home from
the workshop meeting? What was effective? What has
become virtually an impact? (2. & 3 meeting) –
qualitative analysis
Workshop proceedings –
Input phase
► 1. workshop:
– 3 cards for each participant to write
down important topics
– Each card was presented
– The cards were categorised to main
topics
– Most important topics were
discussed
► 2./3. workshop:
– Introductory question was given
Workshop proceedings –
Discussion & reflection phase
► Parent-parent and parent-professional discussion
enhanced by stimulating questions around the chosen
topic
► Content with general importance are emphasized by the
chair and, if appropriate, enriched by findings, research
and practice.
► feedback forms
– How was I able to get involved in the workshop
Was the workshop helpful for me,…
Participants of three years of a 3-
part workshop series 2014 / 2015 /
2016
10%
26%
64%
0%
20%
40%
60%
80%
100%
once twice all
Pe
rce
nta
ge
Number of attended workshop meetings per year
Workshop participation (n=42)
Age distribution parents &
children 2014 / 2015 / 2016
33% 40%
14% 12% 0%
20%
40%
60%
80%
100%
30-35 Years 36-40 Years >40 Years n.A.
Perc
enta
ge
Age groups
Age distribution of parents (n=42)
7%
34% 32%
15% 10% 2% 0%
20%
40%
60%
80%
100%
<1 Year 1-3 Years 4-6 Years 7-9 Years 10 Yearsand older
n.a.
Perc
enta
ge
Age groups
Age distribution d/hoh children (n=41)
Workshop Topics - Main Topics
generated and activated
► Sibling issues (2x most important topic)
– Binding differences
– rivalries
– fair distribution of attention
– never send siblings away
– Include siblings (give active role)
– Praise children (letting the sun shine on them)
Workshop Topics - Main Topics
generated and activated
► Family communication (1x most important topic)
– Sign language and CI
– Recognition of the needs of D / HH children
– experiences and tips for everyday life (table discussions, sports
activities, ...)
– how do I win the attention of the child (calling by name,..)
Workshop Topics - Main Topics
generated and activated
► Normality (3x second most important)
– Courage to life of "normality"
– examples of communication challenges
– accept special needs of D / HH children and the family
Workshop Topics - Main Topics
generated and activated
► Sources of energy and balance (2x third most important)
– Identify sources of power and consciously perceive,
– accept needs of child/parents,
– accepting help,
– PACE-Concept (Hughes& Baylin: 2013): Playfulness, Acceptance,
Curiosity, Empathy
– focus on own resources
Qualitative Analyzes
Responses to reflection questionnaires (Which findings did I take away from
the workshop? What was effective? What has become virtually an impact?) were
analyzed thematically using the following steps for each workshop
meeting and overall (based on Braun & Clarke 2006):
► Familiarization with data:
– Reading and rereading - making notes of initial ideas of what is in the data
► Generating initial codes
► Searching for themes among codes
► Reviewing themes
– Refinement e.g. some themes overlapse; is there a coherent pattern?
► Defining and naming main themes – Frequency of similar responses was taken into account for main themes
Qualitative Analysis
How did I benefit from the workshop?
Courage for non-normality
Family communication
Actively looking at problems & future
concerns
Energy sources, needs and balance
Promote friendships among
children
„Ich konnte mir vom Seminar mitnehmen, wie wichtig es ist die
Freundschaften zwischen unseren Kindern mit Hörverlust zu
fördern, damit sie sehen, dass sie nicht allein sind.“
„My learning from the seminar was how important it is to foster
friendships between children who are deaf or hard of hearing,
so they can see that they‘re not alone.“
Sibling revalries
„Es ist wichtig, das Geschwisterkind so einbeziehen, dass es
eine aktive Rolle spielt. Aufmerksamkeit teilen!“
„It is important to include the sibling so that it plays an active role.
Share attention!“
„Ich sehe jetzt Konflikte zwischen den Geschwistern gelassener.“
„I am now much better able to cope with sibling conflicts.“
Family communication
„Einfacher ist es auf jeden Fall, wenn ich sie zuerst beim Namen
nenne, auf ihre volle Aufmerksamkeit warte und dann loslege.
Solche Tipps erleichtern den Alltag sehr.“
„It‘s definitely easier when I call her name first, wait for her full
attention, and then begin (to speak). Such tips make everyday
communication much easier.“
„Familienkommunikation besser gestalten: Geräusche
ausblenden, Blickkontakt, Ritual, Nachfragen.“
„Establish good communication patterns in the family: eliminate
background noise, establish eye contact, establish rituals, ask for
clarification.“
Support through exchange
„Es tut sehr gut zu sehen, dass jeder ähnliche Probleme hat und
man nicht alleine mit seinen Sorgen dasteht.“
„It feels good to know that others have similar problems and that
you are not alone.“
„...interessant ... wie andere Eltern alltägliche Probleme lösen,
wie z.B. das Tragen eines Helms beim Sport, damit er nicht
gegen die CI‘s oder Hörgeräte drückt.“
„…it‘s interesting how other parents solve everyday problems,
such as fitting a sport helmet so that it doesn‘t push against the
CIs or hearing aids.“
Courage for non-normality
„Normalität - wo sind meine Grenzen der Normalität? Ich bin an
der Randnormalität, aber ich bin froh, die Massennormalität ist
nicht in meiner Welt.“
“Normality - where are my limits of normality? I'm at the edge of
normality, but I'm glad the mass normality is not in my world.“
„Man darf den Mut haben, sämtliche individuelle Lösungen zu
finden, anstatt sich an Regeln zu halten.“
„It is okay to have the courage to find various individual solutions
instead of playing by the rules.“
Balance, energy sources and
needs
„Damit wir mit unseren Kinder qualitativ spielen, reden,
kommunizieren können, müssen wir Kraft in der Zeit ohne Kinder
tanken.“
“In order to be able to play, talk, communicate on a high quality
level with our children, we need to regain strength in the time
without children."
„Was gibt Kraft? Die Kinder, so wie sie sind, die Zeit mit ihnen! Je
größer das Leid sein kann, desto größer ist auch die Freude – das
Leben ist ein auf und ab!“
„What gives energy? Children and the time with them! The more
suffering the more joy there is – life is full of ups and downs.“
Importance of sign language
Gebärden sind wichtig: wir haben uns als Familie
zusammengesetzt und geübt.“
„Sign language is important: we came together as a family to
practice.“
„Wir legen sehr viel Wert auf die Gebärdensprache. Mein
Hintergedanke ist: wie sich das Kind bzw. die Eltern fühlen, die
nie Zugang zur Gebärdensprache haben?“
„We set great value on sign language. My thoughts: how do
children/parents feel who never learned sign language?“
Actively looking at problems
„Was kommt in der Zukunft – trotz dieser belastenden Frage
bemühe ich mich ruhig zu bleiben: wir leben heute und ich muss
mich auf heute konzentrieren.“
„What will happen in the future – despite this distressing
question I try to stay calm: we live in the present and I have
focus on here and now.“
„Wenn man den Mut hat, hinzuschauen, beginnt sich die
Situation zu ändern.“
„If we muster up the courage to look [at problems] the situation
starts to change.“
Quantitative Analyzes
General Evaluation
0 0,5 1 1,5 2 2,5 3
My input was acknowledged
Interest in topics discussed
Usefulness for daily life
Workshop Atmosphere
Workshop chairs were helpful moderatingthe discussions
Average rating points (0-3)
Ra
tin
g c
rite
ria
Average workshop rating
Beginning (n=39) End (n=32)
Self-efficacy of parents
Participants who took part in the first and last of the
workshop meetings (n=27):
Norm: German population (n=2031)**
**Schuhmacher et al., 2001
Self-efficacy*
(GSE)
Norm Ø (SD) 29,38 (5,36)
Participants Beginning Ø (SD) 29,56 (3,25)
Participants End Ø (SD) 30,41 (5,09)
Significance of change (p<=0,05) n.s.
Significance of difference to
norm (p<0,05) n.s.
*Schwarzer & Jerusalem, 1995
* Score range 10-40 (higher score =
higher perceived self-efficacy)
Participants overall (incl people who
only took part once):
No significant difference to norm.
Burnout tendencies of
parents
*Borritz & Kristenson, 1999
*Score range 0-100 (higher score=
higher burnout tendencies)
Norm: Danish population (n=1498)**
**Borritz & Kristenson, 2004
Burnout tendencies*
(CBI)
Norm Ø (SD) 32,70 (15,7)
Participants Beginning Ø (SD) 46,63 (15,23)
Participants End Ø (SD) 44,23 (16,54)
Significance of change (p<=0,05) n.s.
Significance of difference to
norm (p<0,05) p<0,001
Participants overall (incl people who
only took part once):
Significant difference to norm (p<0,001)
48,31 (13,59).
Participants who took part in the first and last
of the workshop meetings (n=27):
Subjective well-being of
parents
*Bech, 2004
*Score range 0-25 (higher score =
higher subjective well-being)
Norm: German population (n=2473)**
**Brähler et al., 2007
Subj. well-being*
(WHO-5)
Norm Ø (SD) 17,58 (4,97)
Participants Beginning Ø (SD) 13,18 (5,08)
Participants End Ø (SD) 14,18 (6,18)
Significance of change
(p<=0,05) n.s.
Significance of difference to
norm (p<=0,05) p<0,001
Participants overall (incl people who
only took part once):
Significant difference to norm (p<0,001)
13,21 (5,08).
Participants who took part in the first and last
of the workshop meetings (n=27):
Subjective quality of life of
parents
*Power, 2003
*Score range 1-5 (higher score = higher
subjective quality of life)
Norm: German population (n=2473)**
**Brähler et al., 2007
Subj. quality of life*
(EUROHIS-QOL)
Norm Ø (SD) 3,84 (0,73)
Participants Beginning Ø (SD) 3,91 (0,79)
Participants End Ø (SD) 3,96 (0,71)
Significance of change
(p<=0,05) n.s.
Significance of difference to
norm (p<=0,05) n.s.
Participants overall (incl people who only
took part once):
No significant difference to norm.
Participants who took part in the first and last
of the workshop meetings (n=27):
Discussion
eudaimonia
(QoL)
Is well-being a synonym of happiness?
happiness
(emotional
status)
fulfillment
(way towards
self-realisation)
*based on Bertelli, 2010