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?