Caregiver Research: Developmental Disabilities

Consumer-directed supports: economic, health, and social outcomes for families.

Caldwell J.  Department of Disability and Human Development, University of Illinois in Chicago, Chicago, IL 60608, USA.  Ment Retard. 2006 Dec;44(6):405-17.


The impact of a consumer-directed support program on family caregivers of adults with developmental disabilities was explored. Economic, health, and social outcomes were compared between families in the program and families on the waiting list for the program. Caregivers of adults in the program reported fewer out-of-pocket disability expenses, greater access to health care, engagement in more social activities, and greater leisure satisfaction. There also appeared to be greater impacts on lower income families; these caregivers reported better mental health and access to health care than did similar caregivers on the waiting list.

Controlled evaluation of support groups for grandparent caregivers of children with developmental disabilities and delays.

McCallion P, Janicki MP, Kolomer SR.  University of Albany, Albany, NY 12222, USA.  Am J Ment Retard. 2004 Sep;109(5):352-61.


There have been growing reports of older women and men caring for their grandchildren and great grandchildren. Many of these grandparents are caring for children with developmental disabilities. To systematically examine the effectiveness of a support group intervention for such grandparents, we recruited 97 grandparents through three agencies in New York City and assigned them to treatment and wait list control conditions. Significant reductions in symptoms of depression and increases in sense of empowerment and caregiving mastery were found for the treatment group. Similar effects were found for the control subjects when they later received the intervention.


Effect of preventive dentistry training program for caregivers in community facilities on caregiver and client behavior and client oral hygiene.

Glassman P, Miller CE. University of the Pacific School of Dentistry, San Francisco, CA, USA.  N Y State Dent J. 2006 Mar-Apr;72(2):38-46.

The influx of persons with developmental disabilities into community-based programs has required the development, expansion and improved integration of community-based services. The role of caregivers in these community settings has become pivotal. However, with regard to daily activities, oral hygiene is often a low priority. Few attempts have been made to study caregiver participation in oral disease prevention and practices. This study evaluated the effects of an indirect training program, where caregivers were trained but the ultimate effects were demonstrated in adult clients. In addition, these effects were demonstrated in community care settings. A multiple baseline design, across three group homes, included 11 adult clients with developmental disabilities. This study evaluated the effects of training, instruction to use training and coaching on the presence of caregivers during oral hygiene sessions, the duration of toothbrushing and plaque scores of the clients. The results of this investigation demonstrated that there was an increase in caregiver presence and duration of brushing with a concurrent decrease in plaque scores. Caregivers responding to social validation questionnaires believed that 8 out of 11 clients had increased skills. This study demonstrates that caregiver training, combined with specific instructions to use training information and coaching of caregivers, can have a positive impact on the oral health of individuals with developmental disabilities living in community settings.

The effect of religious coping on caregiving appraisals of mothers of adults with developmental disabilities.

Miltiades HB, Pruchno R. Department of Social Work and Gerontology, Shippensburg University, PA 17257-2299, USA.  Gerontologist. 2002 Feb;42(1):82-91.


PURPOSE: This article explores the association between race and religious coping on caregiving appraisals for mothers who coreside with an adult child with mental retardation.


DESIGN AND METHODS: 71 Black and 71 White women (aged 50 or older) were matched on demographic characteristics to control for the association between race and socioeconomic status. Structural equation analysis was used to examine the relationship between race, religious coping, and caregiving appraisals.


RESULTS: Black women were more likely to use religious coping. Religious coping was associated with higher levels of caregiving satisfaction, but not with burden. Blacks experienced higher levels of caregiving satisfaction. Blacks also experienced higher levels of caregiving burden due to their poor health.


IMPLICATIONS: The needs of Blacks should be considered when developing “best practices” in service provision. Culturally sensitive outreach approaches should not ignore the importance of faith and faith-based organizations in the lives of Blacks.

The Family Stress and Coping Interview for families of individuals with developmental disabilities: a lifespan perspective on family adjustment.

Nachshen JS, Woodford L, Minnes P.  Department of Psychology, Queen’s University, Kingston, Ontario, Canada.  J Intellect Disabil Res. 2003 May-Jun;47(Pt 4-5):285-90.

BACKGROUND: The present study investigated the psychometric properties of the Family Stress and Coping Interview (FSCI), a questionnaire designed to quantitatively and qualitatively examine the experiences of parents of children with developmental disabilities (DDs).


METHODS: The participants consisted of 106 primary caregivers of 106 individuals with DDs from centres in Eastern, Central and North-western Ontario, Canada. The participants completed a demographic questionnaire, the FSCI, and the Vineland Adaptive Behaviour Scales.


RESULTS: The results of this study indicate that the FSCI has adequate reliability (i.e. internal consistency and long-term stability) and validity (i.e. independent item ratings and discriminant validity).


CONCLUSIONS: The results of this study support the use of the FSCI as a measure of family stress in research and practice.

Health outcomes of midlife and older Latina and black American mothers of children with developmental disabilities.

Magana S, Smith MJ.  University of Wisconsin-Madison, USA.   MAGANA@Waisman.Wisc.Edu   Ment Retard. 2006 Jun;44(3):224-34


The impact of caring for a child with a developmental disability on the physical and mental health of Latina and Black American women was examined. We used the National Health Interview Survey to compare the health of older mothers who were co-residing with a child who had a developmental disability to the health of same age mothers without caregiving responsibilities. Findings show that for both groups, older adult caregivers were more likely to report having limitations from arthritis than their noncaregiving counterparts. Caregiving was associated with more depressive symptoms for Latinas, but this relationship was not found for Black American women. Findings suggest that physical and mental health of caregivers need more attention in research and practice.

Juggling and struggling: a preliminary work-life study of mothers with adolescents who have developmental disabilities.

Parish SL.  School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599, USA.  Ment Retard. 2006 Dec;44(6):393-404.


A focus group study was conducted to develop an understanding of the experiences of mothers who are trying to balance employment with caring for an adolescent with developmental disabilities. Mothers reported facing considerable difficulties balancing work and caregiving responsibilities because support services rapidly declined when their child reached adolescence. Service cuts were related to the fact that adolescents are expected to be able to care for themselves, despite the fact that for many adolescents with disabilities, this is not possible. The mothers also reported that the preponderance of the responsibility for arranging care for their children was theirs and was not shouldered by their partners. Policy implications are discussed.

Normalization in families raising a child who is medically fragile/technology dependent and developmentally delayed.

Rehm RS, Bradley JF. University of California, San Francisco, USA.  Qual Health Res. 2005 Jul;15(6):807-20.

The authors combined and analyzed parent data from two field studies examining family experiences in raising children who were both medically fragile and developmentally delayed or disabled to compare these families’ experiences to published attributes of normalization. Normalization is usually considered a useful conceptual and coping strategy for families of children with chronic conditions, but it has not been examined in families whose children have both complex physical and developmental disabilities. Developmental delays compounded the effects of the children’s physical chronic conditions, severely affecting how families organized and managed their daily lives, with the result that families did not fit currently established attributes of normalization. Instead, parents recognized normal and positive aspects of their lives while acknowledging the profound challenges that their families faced. Parents concluded that it was possible to have a good life that was not necessarily normal by usual standards.

Personality, coping style and well-being of parents rearing children with developmental disabilities.

Glidden LM, Billings FJ, Jobe BM.  Department of Psychology, St. Mary’s College of Maryland, St. Mary’s City, MD 20686, USA.  J Intellect Disabil Res. 2006 Dec;50(Pt 12):949-62.


BACKGROUND: Parents with children with developmental disabilities (DD) encounter a variety of stressors associated with rearing their children and must develop effective coping mechanisms in order to adapt successfully to these challenges. Previous research has failed to establish the role of parental individual differences in the reported use of different coping strategies. The current study explores parental personality and whether children with DD were adopted or born into the families and their influence on the coping strategies used by mothers and fathers.


METHODS: A total of 97 mother-father dyads rearing at least one child with DD were participants. They narrated stressful situations related to their child and completed the Ways of Coping Questionnaire twice. Data were also collected with regard to personality, depression and subjective well-being (SWB).


RESULTS: Both adoptive and birth mothers and fathers used more problem-focused than emotion-focused strategies. Personality factors, Neuroticism especially, were predictive of coping strategy use. Higher levels of Positive Reappraisal were associated with higher levels of SWB, whereas higher levels of Escape-Avoidance were associated with lower levels of SWB, but only for mothers. Results were consistent with a dispositional model of strategy use in that frequency of use was associated with personality characteristics, was consistent over time, and for different children in the same families. Future research should focus on the persistence of the associations between strategy use and well-being and whether they hold true at different stages of the lifespan when coping contexts may change quite dramatically.

A preliminary study of perceived stress in adults with intellectual disabilities according to self-report and informant ratings.

Lunsky Y, Bramston P. University of Toronto, Toronto, Ontario, Canada.  J Intellect Dev Disabil. 2006 Mar;31(1):20-7


BACKGROUND: Stress is a major risk factor for mental health problems in individuals with intellectual disabilities, however few studies on stress have been conducted that take into account the perspective of both the person with the disability and the caregiver. The present study evaluated an informant version of the Lifestress Inventory, and compared it to the self-report version.


METHOD: Seventy individuals with intellectual disability paired with their caregivers completed the Lifestress Inventory, the Inventory of Negative Social Interactions and the Birleson Depression Scale.


RESULTS: Informant and self-report ratings on the Lifestress Inventory were internally reliable, showed modest agreement with each other and correlated with the Negative Social Interactions and Depression measures. The most troublesome stressors reported by informants and self-reports differed, however, and families tended to agree more with self-reports than did staff informants.


CONCLUSIONS: The informant version of the Lifestress Inventory is a suitable parallel instrument but not a replacement for self-reports.

Providing family support through community guides.

Romer LT, Richardson ML, Nahom D, Aigbe E, Porter A. Division of Developmental Disabilities and the Center for Disability Policy and Research, Department of Health Services, 146 N. Canal St., Suite 313, University of Washington, Seattle WA 98103, USA. Ment Retard. 2002 Jun;40(3):191-200.


The Family Support Opportunities program in the state of Washington has a unique component. People with extensive knowledge of local communities, referred to as community guides, were made available to all families enrolled in the program. Community guides assisted families by seeking information about community resources that families needed and helping families connect to those resources. Responses from a survey of 312 families were analyzed to determine the impact of the community guides’ services. Results suggest that when families indicated satisfaction with their community guides, they reported better outcomes in terms of their needs being met, satisfaction with Family Support Opportunities, and connections to their local communities.

Support for family carers of children and young people with developmental disabilities and challenging behaviour.

McGill P, Papachristoforou E, Cooper V.  Tizard Centre, University of Kent, Canterbury, Kent, UK.  Child Care Health Dev. 2006 Mar;32(2):159-65.


BACKGROUND: This study gathered information about perceptions of family carers of children and young people with developmental disabilities and challenging behaviour of the help, support and treatment received from services and professionals.


METHODS: A total of 66 family carers completed postal questionnaires on the nature of, and their satisfaction with, services, professional help and advice received in respect of their family member’s challenging behaviour.


RESULTS: Most carers were dissatisfied with support and services received. Almost half reported receiving no professional input or none that was helpful. Over two-thirds reported receiving respite care but, in a third of these, the child had been excluded because of challenging behaviour.


CONCLUSIONS: Families of children with challenging behaviour often do not receive services and supports that they find helpful. Treatments provided are not always evidence based. The ‘rationing’ of services creates a danger of inequality of access. We need a more proactive approach to identifying and meeting the need for family support.