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


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


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)



► 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,..)



► Normality (3x second most important)

– Courage to life of "normality"

– examples of communication challenges

– accept special needs of D / HH children and the family



► 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)



Significance of change (p<=0,05) n.s.


norm (p<0,05) p<0,001



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)


**Brähler et al., 2007

Subj. well-being*

(WHO-5)

Norm Ø (SD) 17,58 (4,97)



Significance of change

(p<=0,05) n.s.


norm (p<=0,05) p<0,001



Significant difference to norm (p<0,001)

13,21 (5,08).



Subjective quality of life of

parents

*Power, 2003

*Score range 1-5 (higher score = higher

subjective quality of life)


**Brähler et al., 2007

Subj. quality of life*

(EUROHIS-QOL)

Norm Ø (SD) 3,84 (0,73)



Significance of change

(p<=0,05) n.s.


norm (p<=0,05) n.s.

Participants overall (incl people who only

took part once):

No significant difference to norm.



Discussion

eudaimonia

(QoL)

Is well-being a synonym of happiness?

happiness

(emotional

status)

fulfillment

(way towards

self-realisation)

*based on Bertelli, 2010

Documents

Hotspot Siblings - Findings from co-creative parent