CAREGIVER BURDEN AND SOCIAL SUPPORT IN FAMILIES OF CHILDREN WITH AUTISM- A LITERATURE REVIEW

Author(s)

Shah D*1;Giannetti V2, Pfalzgraf A1 1Duquesne University, Mylan School of Pharmacy, Pittsburgh, PA, USA, 2Duquesne University, Pittsburgh, PA, USA

OBJECTIVES: Caregiver burden and social support play a crucial role in moderating the treatment outcomes of children with autism. It is important for healthcare services researchers to consider the impact of these constructs while understanding treatment outcomes. The goal of this study is to provide a comprehensive review of instruments that have been used to measure caregiver burden and social support in autism. METHODS: A systematic literature review was conducted from January 2002 - December 2012 using the databases: Medline, PsychINFO, Cochrane, Mental measurements year book and Health and psychosocial instruments to identify instruments. The psychometric properties of the instruments have been assessed. Inclusion / exclusion criteria that were applied to the study are: language, availability of full text articles, and relevance to the topic of study.  RESULTS: The review also yielded 20 instruments for measuring social support. Of these, 19 were generic and 1 was condition-specific. The most common domains included in the instruments were: instrumental support and emotional support.  Some instruments consisted of domains based on source of social support such as informal support from friends, family and spouse.  A review of the psychometric properties of these instruments indicated good reliability (Cronbach’s alpha 0.7 – 0.95).  Caregiver burden has been studied less frequently as compared to social support. Caregiver burden was mostly measured using 4 instruments. Of these four instruments, Caregiver Strain Questionnaire has been validated in a population of parents of autistic children. It has good reliability (Cronbach’s alpha 0.75 – 0.93)  CONCLUSIONS: Caregiver burden and social support are two important constructs that affect the quality of life (QoL) of caregivers of children with autistic disorder. Consideration of the nature and extent of caregiver burden and social support will also facilitate the development of appropriate interventions that can help improve caregivers’ quality of life (QoL) and functioning.

Conference/Value in Health Info

2013-05, ISPOR 2013, New Orleans, LA, USA

Value in Health, Vol. 16, No. 3 (May 2013)

Code

PMH50

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Mental Health, Neurological Disorders, Respiratory-Related Disorders

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