The Uncharted Journey Family Members’ Perceptions of Early Childhood Intervention Services and its...
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Transcript of The Uncharted Journey Family Members’ Perceptions of Early Childhood Intervention Services and its...
The Uncharted Journey
Family Members’ Perceptions of Early Childhood Intervention Services and its Relationship to Family Quality of Life
Why did I conduct this study?
• ECI services have traditionally used child functional measures
• Move towards more family- centred practice• Apart from satisfaction- what other outcomes
could be useful?• Improving quality of life is a fundamental
outcome of disability programs• No study had explored the use of Family QoL as
an outcome measure.
Aims
• To provide a preliminary exploration of family members’(Mo, Fa,Sibs, Ext Fam) of children with disabilities- perceptions of ECI and its affects of family quality of life
Research Questions
• Does participation in an ECI program affect the quality of life of families?
• Is measuring changes in family quality of life a useful outcome measure of current family-centred practice?
• What can we learn from ECI families’ experiences that may improve family-centred practice?
Multi-method design
Literature Review
Stage 1Site Visits
ManagersGroup Observation
Parent Coffee Group
Stage 2Quantitative
ComQoL(ECI)
Stage 3Qualitative
FamilyInterviews
Stage 2: QuantitativeFamily Members’ QoL
• Comprehensive Quality of Life Scale (Cummins, 1997) Adult & School-Age Versions were used
• 7 QoL Domains- material wellbeing, health, productivity place in the community, safety, intimacy, emotional wellbeing.
• Objective QoL: Descriptors
• Subjective QoL: Satisfaction (7 point Likert scale)
Com QoL(ECI)-participants
Characteristics Mo Fa Sib Ex Fam
AGE11-15 years 116-25 years 1 126-35 years 5 1 236-45 years 6 546+ years 1Mean Age 35.6 39.1 13.5 32STRUCTURETrad. Nuclear 10 6 2Single 3Sep.Family Unit 2RESIDENCEMetropolitan 9 5 1 2Region/ Rural 4 1 1
Overall Subjective QoL
• Overall Subjective Quality of Life= 5.05 (67.5%SM).
• Within ± 1 SD of Cummins’ (1997) mean (5.38 ± 0.71, 73%SM)
• Outside of gold standard of 70-80%SM (Mellor, Cummins & Loquet, 1999).
Subjective QoL
• 5 of the 7 QoL domains –under 70%• Productivity (60.1%SM) -9.9% SM lower• Emotional Wellbeing (62.2%SM)- 7.8%SM lower• Health (65.9%SM)-5.1%SM lower• Place in the Community (68.1%SM)-1.9%SM
lower• Material Wellbeing (69.6%SM)- 0.4%SM lower
Perceived Changes in QOL
• To explore any perceived changes in Fam Qol that family members attributed to ECI.
• What changes have you noticed in your own QoL since commencing ECI?
• Also explored changes in the lives of child with a disability & other family members
• Asked to explain changes
Perceived Changes in Family Members’ QoL attributed to ECI
SignificantNegativeChanges
SomeNegativeChanges
NoChange
SomePositiveChanges
SignificantPositiveChanges
Mixed
Change InChild’s QualityOf Life
2 18 3
Changes In YourOwn Quality OfLife
8 10 2 3
Changes InOther FamilyMembers’Quality Of Life
1 3 10 8 1
Changes in Child’s QoL
• 91% reported positive changes in functioning, physical skills, social skills, confidence, self esteem, happiness
• 2 family members (same family) reported No Change
Changes in your own QoL
• 12 (52%) reported positive changes
• Mother +• Support• Professional guidance• shared experiences
• Mixed (+ &-) 3 mothers• Stress, guilt, cynicism,
variability in mood• feeling helpless
• No change- 8 FM (1mo, 3 fa, 2 sibs, 2 ext fam)
Changes on other family members’ QoL
• 8 reported positive changes
• increased cooperation,• increased confidence• joy• 10- No change
• 5 reported mixed/ some negative/ significant negative changes
• Adverse effects on mothers’ lives/emotions
• Changes in siblings behav • Ext family: difficulty
accepting child’s illness, or decreased support
Other comments re ECI/QoL
• Enormous amounts of time-not enough hours in the day
• Life revolves around the child with a disability• Lots of driving • ECI hours- don’t allow for fathers’ involvement
(second hand information)• Confusing/frustrating- not well informed• Difficulty accessing service• Less ECI time
Family Interviews
• 3 families (6 family members)
• Sally (27 yrs), son Luke (18mo)- undiagnosed, sister (Mary-24yrs) and brother in law (Wayne-25 yrs),
• Karen (43yrs) and Tom (42yrs) ,Mark (30mo) with CP, Sam (8yr)
• Margaret (41yrs). Husband (John), Adele (48mo) Brain Damage, Lewis (9yrs).
Interviews: The Uncharted Journey
• Finding Out• Thinking something is wrong
• Seeking Advice
• Being informed and responding to the diagnosis
The Uncharted Journey...
• Discovering A Way Into the Disability System
• Initial Support
• Service Information
• Social & Emotional
• Accessing services and funding
The Uncharted Journey...
• Developing a Service Network
• Wanting what is best for the child
• Wanting what is best for the family
The Uncharted Journey...
• Effects on Family Quality of life• Work & childcare
• Family Finances
• Health
• Relationships
Contributing factors
• Mothers- overwhelmed by care-giving demands
• Additional financial costs• Frustrations and endless
wait to access ECI services
• Absence of truly family-centred services
• Discrimination
• Lack of validation and respect shown to family members
• Conflicted/paradoxical relationships b’n parents and CWAD
• Reduced positive affect in their lives (joy/play/contentment optimismetc)
Services need to provide
• Systemic processes to ensure families are well information
• Enhance confidence and empower families
• Improve family choice & control • Increase family’s Sense of Coherence
(comprehensible, manageable and meaningful) Antonovsky 1993
Raises Questions
• Why are families not provided with the necessary information or some-one to guide their journey?
• Why are the systems currently in place so frustrating to navigate?
• Why do health professionals act in ways that are unhelpful and erode family members’ confidence and mental health?
• What is prohibiting services from adopting a more family-centred approach?