Publication year
2016
Citation Title
Services and supports, partnership, and family quality of life: Focus on deaf-blindness
Journal Name
Exceptional Children
Journal Volume
83
Issue Number
1
Page Numbers
77-91
DOI
10.1177/0014402916655432
Summary
Services (e.g., educational, social, health programs) and social supports are very important for the well-being of families of youth with disabilities. Caregivers of youth with deaf-blindness (i.e., severe auditory and visual impairments) reported their families’ quality of available services and supports, of life, and of the partnership with youth’s primary provider. Relationships, especially high-quality relationships with primary providers, can greatly improve the well-being of families with youth with deaf-blindness.
Key Findings
Having more social support and greater satisfaction with a youth’s primary provider (e.g., teacher, healthcare provider, childcare provider) were related to higher family quality of life.
Married caregivers reported higher family quality of life than unmarried caregivers.
Only at high levels of primary provider satisfaction did caregivers who had high satisfaction with educational services also report high family quality of life.
Implications for Military Professionals
Attend trainings about how to build positive partnerships with families with youth with developmental disabilities, including youth with deaf-blindness
Facilitate digital support groups, for military families with youth with deaf-blindness
Implications for Program Leaders
Provide each youth with deaf-blindness in military families with a designated, highly-trained provider that assists the youth in communication, learning, and personal care during school
Offer classes to educate military families with youth with deaf-blindness and other disabilities about education laws regarding disabilities and how to advocate for their children
Implications for Policy Makers
Encourage the training of professionals working with military families with youth with deaf-blindness about how to work with these youth and build strong partnerships with their families
Promote the development of childcare programs with specialized, trained staff for military youth with disabilities, including youth with deaf-blindness
Methods
Primary caregivers of youth, age birth to 21 years with deaf-blindness, were recruited through each state’s deaf-blind census; 16 states distributed surveys with an 11% response rate.
Caregivers completed surveys regarding family quality of life, quality of available supports and services, and quality of partnership with the youth’s primary professional provider.
The relationships between family quality of supports and services, quality of life, and quality of primary provider partnership were examined.
Participants
Participants included 277 caregivers of youth with deaf-blindness in the following age ranges: 0-2 years (8%), 3-8 years (32%), 9-14 years (29%), 15-18 years (19%), and 19-22 years (10%).
Caregivers were primarily female (90%) and parents (94%) of a youth with deaf-blindness; they identified as White (79%), Latino (9%), Black (8%), and Asian American or Native American (3%).
The majority of youth had co-occurring language or speech disorders (82%), developmental delays (80%), and physical disabilities (68%).
Limitations
Caregivers were primarily White mothers of youth with deaf-blindness, and results may not generalize to other caregivers of youth with deaf-blindness or with other disabilities.
Respondents may differ from non-respondent caregivers in several ways (e.g., stress level).
The type of school youth attended (e.g., public, private, specialized) was not assessed and may have influenced results, especially results related to educational services.
Avenues for Future Research
Examine the effects of the quality of the provider partnership on specific domains of family quality of life (e.g., emotional well-being, physical well-being, family interactions)
Investigate the characteristics of high-quality provider partnerships and how they may differ between educational, informational, and other types of providers
Explore the association between provider training and caregiver rating of partnership quality
Focus
Civilian
Target Population
Population Focus
Abstract
In this, study, the authors examined the moderating effects of partnership on the relationship
between services and supports adequacy and family quality of life (FQOL) for families of
children with deaf-blindness ages birth to 21. A social-ecological approach enabled examining
the impact of disability on the family system. A survey, consisting of four measures, was
completed by 227 parents of children with deaf-blindness. Results suggest that FQOL for
families of children with deaf-blindness is explained, in part, by satisfaction with the adequacy
of friend and family supports and child-care services. Satisfaction with partnership also
significantly predicted FQOL for these families. Significant interaction effects indicated that
the relationships (a) between education services adequacy and FQOL and (b) between related
services adequacy and FQOL are dependent on satisfaction with partnership. Implications for
research and practice are discussed.
between services and supports adequacy and family quality of life (FQOL) for families of
children with deaf-blindness ages birth to 21. A social-ecological approach enabled examining
the impact of disability on the family system. A survey, consisting of four measures, was
completed by 227 parents of children with deaf-blindness. Results suggest that FQOL for
families of children with deaf-blindness is explained, in part, by satisfaction with the adequacy
of friend and family supports and child-care services. Satisfaction with partnership also
significantly predicted FQOL for these families. Significant interaction effects indicated that
the relationships (a) between education services adequacy and FQOL and (b) between related
services adequacy and FQOL are dependent on satisfaction with partnership. Implications for
research and practice are discussed.
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