Exploring Coping Experiences of Parents
of Adult Children with Dual Diagnosis
Presentation by Irene Carter icarter@uwindsor,ca
James Coyle jcoyle@uwindsor.ca
Dual Diagnosis

Co-existence of a developmental disability and a mental
health illness (National Association of the Dually Diagnosed,
2012)

A person with a developmental disability has life-long
“prescribed significant limitations in cognitive
functioning and adaptive functioning” (Bill 77, Services for
Persons with Developmental Disabilities Act, 2008)

A mental health condition impacts “a person’s ability to
function effectively over a long period of time” (Health
Canada, 2011)
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Prevalence
• 14.3% of Canadians reported having a
disability in 2006 (Statistics Canada, 2009)
• 40% of this population is estimated to
also have a mental health disability.
(Cooper, Smiley, Morrison, Williamson, and Allan, 2007)
Caring for a Child with a Dual Diagnosis
• Increased lifespan of individuals with
disabilities increases number of aging parents
and guardians caring for their adult children
(Chou, Lee, Lin, Kroger, & Chang, 2009; Perkins &
LaMartin, 2012)
• Caregivers of children with a disability
frequently report
•lack of social supports and a lower quality
of life (Chou, Lee, Lin, Kroger, & Chang, 2009)
•financial difficulties (Olsson & Hwang, 2008)
Caring for Persons with DD in the
Community
• Strengths-based approach to
• reduce social isolation and promote empowerment
• focus on client skills and competencies
• More research is needed on
• the factors that contribute to family outcomes
(Esbensen, 2011)
• interventions that support family caregivers across the
lifespan (McIntyre, 2011)
• Overall need to investigate the role of parental caregivers
of adult children to give us insight into interventions that
support parental caregivers
Rationale for Study
• Explore factors that impact the coping abilities of
parents who care for adult family members with dual
diagnosis
• Draw out the factors that result in enhanced coping
abilities by these parents or caregivers
Research Questions
For parents who care for live-at-home adult children
with dual diagnosis:
• What factors promote positive coping abilities?
• How do they think they are coping?
• How do they think they have coped?
• What social support resources outside the family
household are perceived to help families cope?
• How does family coping influence quality of life for
family and for member with a dual diagnosis?
Methodology
15 In-depth interviews with parent/guardian
• Provided a research approach that helped
interpret and understand the experience of
study participants
• Ensured the collection of sufficient data to go
beyond theoretical saturation
Recruitment
• Collaboration with community-based
agencies:
•
•
•
•
•
Community Living Windsor
Community Living Essex County
Autism Ontario (Windsor & Chapters)
Learning Disabilities of Canada
Dual Diagnosis Outreach Service
• Used advertising with above agencies in
newsletters, etc. and snowball sampling
Data Analysis
• Use of Atlas.ti software to code transcribed
interviews and to develop categories of codes
• Compared the likenesses and differences in
categories, and noted any connections
• Discovered underlying concepts and described the
content by interpreting the data in an ongoing
process, analytically developing main themes
Demographic Info of Participants (n=16)
• 11 Female & 4 Male
• Age
– 4 age 45-59
– 10 age 60-74
– 1 75 or older
• Education
– 1 Not complete HS
– 6 high school diploma
– 5 university degree
– 3 graduate courses/
degree
• Income
– 1 less than $20K
– 3 $20 to 40K
– 3 $40 to 60K
– 3 $60 to 80K
– 5 over $80K
• One participant
declined to answer
Demographic Info of
Adult Child with DD (n=16)
• Level of disability
– Moderate 5
– Severe
9
– Unknown 2
• Age
– 18 to 30
7
– 31-45
7
– Over 45
1
– Unknown
1
• 5 female & 10 male (1
unknown)
• Other person who cares
for adult child
– Yes
8
– No
7
– Unknown 1
Qualitative Categories & Themes
1. Rewarding Experiences
2. Accessing Social Support
3. Child’s Interests & Interactions
with Parents
4. Education & Work Experiences
5. Difficult Experiences
6. Looking to the Future
7. Diagnoses
8. Educating Society
A. Resilient Coping
B. Intergenerational
Experiences
C. Struggling to
Stay Hopeful
D. Coping with
Stigma
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Findings: Resilient Coping
• Respite services were mentioned by caregivers most
frequently as a service they utilized to cope with
raising their children
– “They’ve [respite services] been fantastic with helping
me financially to get that little time to myself.”
• Caregivers spoke positively about the formal
supports they utilized, such as respite services and
day programs
– “Her life has been enhanced by the experienced
caregivers.”
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Findings: Resilient Coping
• Caregivers also reported informal supports from
family & friends
• Emphasized the positive impact of support from
other parents of children with disabilities
– “I would not have been so happy if I hadn’t met them.
[I] am still in touch with these people…I feel very
fortunate to know these people.”
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Findings: Intergenerational
Experiences
• 2 caregivers mentioned importance of patience &
persistence when interacting with child
• Positive & negative experiences with respite
workers and educators
– “she loves going out with them … these workers are
friends
– “they had a buddy system where kids in different
grades would look out after him”
– “he was continually harassed and hurt at school”
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Findings: Struggling to Stay Hopeful
• Some caregivers described a lack of support from
extended family members due to geographical distance
• Caregivers often experienced financial difficulties:
funding insufficient to provide for their child’s special
needs
• The primary fear: how their child would be supported
when they were no longer able to care for them
– “I am not going to be there forever. This hangs over
me every day… For sure you can’t imagine one day
you are not going to be there to do things and take
care of her. You cannot imagine that.”
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Findings: Coping with Stigma
• Burden of diagnostic testing and uncertainty about
diagnosis
• Need to further educate teachers and caregivers
regarding disabilities
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Implications for Social Work
Caregivers need assistance
• Researching local group homes while the child is at
an early age, and get their child placed on a wait list
• Regarding hiring and supervising the workers who
assist their children
• To mutually support each other by participating in
workshops and some program delivery
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Implications for Social Work
• Increase knowledge of service providers about the
various challenges faced by caregivers & techniques
to help caregivers cope (Jones and Passey, 2004)
• Study the correlation between stress and the
severity of a crisis to see if certain coping skills are
more effective in reducing the effects of stress (Weiss
and Lunsky, 2011)
• Medical professionals who assist adults with
disabilities should increase their attention on their
aging caregivers and assess them as patients (Chou,
Fu, Lin, & Lee , 2011)
• Develop internet resources to support ageing
caregivers (Perkins & LaMartin, 2012)
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References
• Bill 77, Services for Persons with Developmental Disabilities
Act. (2008).
• Chou, Y.-C., Fu, L.-Y., Lin, L.-C., & Lee , Y.-C. (2011). Predictors
of subjective and objective caregiving burden in older female
caregivers of adults with intellectual disabilities. International
Psychogeriatrics,23(4), 562–572. doi:10.1017/S1041610210001225
• Chou, Y.-C., Lee, Y.-C., Lin, L.C., Kroger, T., & Chang, A.-N.
(2009). Older and younger family caregivers of adults with
intellectual disability: Factors associated with future plans.
Intellectual and Developmental Disabilities, 47(4), 282-294
• Cooper , S. A., Smiley, E., Morrison, J., Williamson, A., & Allan,
L. (2007). Mental ill-health in adults with intellectual
disabilities: Prevalence and associated factors. British Journal
of Psychiatry, 190, 27-35. doi:10.1192/bjp.bp106.022483
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References, cont.
• Esbensen, A. J. (2011). Families of individuals with intellectual
disability and comorbid mental health problems. Journal of
Mental Health Research in Intellectual Disabilities, 4(3), 140157. doi: 10.1080/1931586.2011.597018
• Health Canada, 2011
• Jones, J., &Passey, J. (2004).Family Adaptation, coping and
resources: Parents of children with developmental disabilities
and behaviour problems. Journal on Developmental
Disabilities, 11(1), 31-46.
• McIntyre, 2011
• National Association for the Dually Diagnosed. (2012).
Information on Dual Diagnosis. Retrieved from
http://thenadd.org/resources/information-on-dual-diagnosis/
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References, cont.
• Olsson, M. B., & Hwang, C. P. (2008). Socioeconomic and
psychological variables as risk and protective factors for
parental well-being in families of children with intellectual
disabilities. Journal of Intellectual Disability Research, 52(12),
1102-1113. doi:10.1111/j.1365-2788.2008.01081.x
• Perkins, E., & LaMartin, K. (2012). The internet as social
support for older carers of adults with intellectual disabilities.
Journal of Policy and Practice in Intellectual Disabilities, 9(1),
53-62.
• Statistics Canada (2009). Persons with disabilities, by age
group and sex (2006). Retrieved from:
http://www.statcan.gc.ca/tables-tableaux/sum-som/l01/cst01/health71aeng.htm
• Weiss and Lunsky, 2011
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