The Uncharted Journey (PowerPoint)

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					The Uncharted
  Family Members’ Perceptions of Early
  Childhood Intervention Services and its
  Relationship to Family Quality of Life
Why did I conduct this
  • 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.

  • 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

  • What can we learn from ECI families’ experiences
    that may improve family-centred practice?
Multi-method design

                       Literature Review

     Stage 1                 Stage 2         Stage 3
    Site Visits            Quantitative    Qualitative
                            ComQoL           Family
  Group Observation
 Parent Coffee Group          (ECI)        Interviews
Stage 2: Quantitative
Family 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
Com QoL(ECI)-participants

  Characteristics   Mo     Fa     Sib    Ex Fam

  11-15 years                      1
  16-25 years        1             1
  26-35 years        5      1              2
  36-45 years        6      5
  46+ years          1
  Mean Age          35.6   39.1   13.5     32
  Trad. Nuclear     10      6      2
  Single             3
  Sep.Family Unit                          2
  Metropolitan       9      5      1       2
  Region/Rural       4      1      1
Overall Subjective QoL

  • Overall Subjective Quality of Life= 5.05
  • 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
  • Material Wellbeing (69.6%SM)- 0.4%SM lower
Subjective QoL

  • QoL Domains Over 70%SM

  • Safety (73.9%SM) +3.9%SM

  • Intimacy (73.3%SM) +3.3%SM
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

                   Significant    Some       No       Some      Significant   Mixed
                    Negative     Negative   Change   Positive    Positive
                    Changes      Changes             Changes     Changes
 Change In
 Child’s Quality                              2         18          3
 Of Life
 Changes In Your
 Own Quality Of                               8         10          2           3

 Changes In
 Other Family           1           3         10        8                       1
 Quality Of Life
Changes in Child’s QoL

  • 91% reported positive    • 2 family members
    changes in                 (same family) reported
    functioning, physical      No Change
    skills, social skills,
    confidence, self
    esteem, happiness
Changes in your own QoL

  • 12 (52%) reported       • Mixed (+ &-) 3 mothers
    positive changes        • Stress, guilt, cynicism,
  • Mother +                  variability in mood
  • Support                 • feeling helpless
  • Professional guidance
  • shared experiences      • No change- 8 FM (1mo,
                              3 fa, 2 sibs, 2 ext fam)
Changes on other family
members’ QoL
  • 8 reported positive      • 5 reported mixed/ some
    changes                    negative/ significant
  • increased cooperation,     negative changes
  • increased confidence     • Adverse effects on
  • joy                        mothers’ lives/emotions
  • 10- No change            • 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

  • Finding Out
  • Thinking something is wrong

  • Seeking Advice

  • Being informed and responding to the
The Uncharted Journey...

  • Discovering A Way Into the Disability
  • 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         • Lack of validation and
  by care-giving demands         respect shown to family
• Additional financial costs     members
• Frustrations and endless     • Conflicted/paradoxical
  wait to access ECI             relationships b’n parents
  services                       and CWAD
• Absence of truly family-     • Reduced positive affect
  centred services               in their lives
• Discrimination
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       • Why do health
  provided with the            professionals act in ways
  necessary information or     that are unhelpful and
  some-one to guide their      erode family members’
  journey?                     confidence and mental
• Why are the systems          health?
  currently in place so      • What is prohibiting
  frustrating to navigate?     services from adopting a
                               more family-centred
Closing Comment

  • “It must be remembered that we do not own
    the lives and the stories we tell. They are
    lent to use, given provisionally, if they are
    given at all. They remain always and
    irrevocably the lives and stories of those
    who have told them to us”
    Denzin, as cited in Rice and Ezzy, 1999.

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