Caregiver Burden and Social Support in Families of Children with Autism: A Systematic Literature Review Shah D, Giannetti V, Pfalzgraf A Duquesne University Mylan School of Pharmacy, Pittsburgh, PA, USA
SEARCH STRATEGY RESULTS
BACKGROUND Autism is a developmental disability appearing in the first three years of life. It is characterized by significant delays in language, deficits in social interaction and repetitive or stereotypical behaviors.1
Medline
PsychInfo
Inclusion exclusion criteria applied to title and abstracts
Social support is the perception and actuality of being cared for, having assistance available from other people and belonging to a network of people.3
Inclusion exclusion criteria applied to full articles
70 articles selected for full article review
Instrument
Items
Domain Description
Scaling
Adminis- Reliability tration
Validity in autism caregivers
ZBI5, 6
22
Physical and psychological health; Finances; 5–point Social life; Relationship with the patient; Likert scale
Self admin
Internal consistency: 0.88 – 0.92
Not reported
RCAS6
27
Caregiving burden; Caregiving satisfaction; 5–point Caregiving mastery; Caregiving demands; Likert scale Caregiving impact
Selfadmin
Internal consistency: 0.93
Not reported
CSI7
13
N/A
Yes/No
Self admin
Internal consistency: 0.86
Not reported
FIQ8
50
Negative feelings toward parenting; Negative impact on relationships; Positive impact on parenting; Financial impact; Impact on marital relationship; Impact on siblings
4–point Likert scale
Self admin
Internal consistency: 0.83 – 0.92
Not reported
METHOD Literature search: A systematic literature review was conducted for relevant articles published from 2001 onwards.
Search databases: MEDLINE, PsychInfo, Cochrane, Mental measurements yearbook and Health and psychosocial instruments. Selected key search terms: Autism., ASD, Autistic Disorder, caregiver burden, burden of care, caregiving, social support, family support. Inclusion criteria: Articles in English, availability of full text article, relevance to the topic of study. Exclusion criteria: Articles focused on one aspect of caregiver burden (e.g. parenting stress, depression) instead of the overall caregiver burden, articles that did not use standardized measures for caregiver burden or social support.
Domain Description
Scaling
Adminis- Reliability tration
PSS Fa and PSS Fr12,13,14
40
Perceived social support from family; Perceived social support from friends
Yes / No / Don’t know
Selfadmin
PSS-Fa: 0.9
FSS15, 16, 17,
18
Informal kinship; Spouse/Partner support; 5-point Social organizations; Formal kinship; Likert scale Professional services
Selfadmin
Reliability 0.72; Split-half reliability 0.53
6-point Likert scale
Selfadmin
Cronbach’s alpa: 0.81 Factorial - 0.82 validity
QSSP19
Not Availability of social support ; reported Satisfaction with social support
ZBIAbridged9
12
Personal strain; Role strain
5–point Likert scale
Selfadmin
CGSQ10
22
Objective burden; Internalized subjective burden ; Externalized subjective burden
5-point Likert Selfscale admin
CGSQ – SF11
10
Disruption of activities; Personal distress; Guilt; Time perspective; Basic social functioning; Worry
4-point Likert Selfscale admin
Internal Not reported consistency: 0.77 0.89 Internal Concurrent validity consistency: 0.91; Internal Concurrent validity consistency: 0.890.91
PSS-Fr: 0.88 Not reported
12
Emotional support; Instrumental support
5-point Likert scale
Selfadmin
Internal consistency: 0.91 – 0.95
Construct validity for selected hypothesis
ISSB21
40
Type of social support ; Amount of social support
Not reported Selfadmin
Internal consistency: 0.93; Test-retest reliability: 0.88
Not reported
PSSI22
N/A
Support needs; Satisfaction with support
N/A
Interview Internal consistency: 0.78 – 0.83
Not reported
FFFS23
25
Relationship between 7–point the family and broader social units; Likert scale Relationships between the family and its subsystems; Relationships between the family and the individual, focusing on the reciprocal relationships
Self admin
Internal consistency: 0.91 – 0.92
Not reported
MSPSS24, 25
12
Impact on daily activities and social life; aggressiveness; Impact on health; Economic burden
7-point Likert scale
Selfadmin
Internal consistency: 0.88; Test-retest reliability: 0.85
Construct, convergent and discriminant validity
ISEL26,27,28 ,
40
Belonging; Appraisal; Self-esteem and Tangible Support
True / False rating scale
Selfadmin
Internal consistency: 0.93
Not reported
SSI30
17
Not reported
5-point Likert scale
Selfadmin
Internal consistency: 0.82; Test-retest reliability: 0.83
Not reported
SSSPCD31
12
Not reported
3-point Likert scale
Selfadmin
Internal consistency: 0.88 – 0.9
Concurrent validity
SSS32
20
Support from family; Support from friends; Support from institutions
5-point Likert scale
Selfadmin
Internal consistency: 0.86
Not reported
SQ33
N/A
Sources of support
N/A
Open ended question
N/A
N/A
29
DISCUSSION The review yielded thirteen instruments measuring social support. Of these, one was developed specifically for parents of children with developmental disabilities. The most frequent domains included in the instruments were: 1.Availability of Support (from friends, family, and spouse) 2.Satisfaction with Support. The review yielded seven instruments for caregiver burden. Of these, one has been validated in caregivers of autism. The most frequent domains are: 1. Impact on Relationships 2.Impact on Finances 3.Impact on Time 4.Subjective Burden.
Validity in autism caregivers Not reported
MOS-SSS20
RESULTS - Instruments assessing caregiver burden
OBJECTIVES
Search strategy: Initial screening was conducted to identify articles that were focused on caregiver burden or social support or both in families of children with autism. Articles that met the inclusion/exclusion criteria were then subjected to final review.
Instrument Items
18
47 articles included in the study
Caregiver burden and social support have an impact on treatment outcomes.4 They should be measured using instruments that are reliable and valid.
Identify and describe the instruments used to measure caregiver burden and social support in families of children with Autism and to assess their psychometric properties.
RESULTS - Instruments assessing social support Health and psychosocial instruments
376 relevant articles
Caregivers require substantial changes to their lives to care for the child. Caregivers face an additional responsibility of constantly making the right treatment decisions. This imposes social, economic and humanistic burden on the caregivers.2
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 autistic disorder.
Cochrane
Mental measurements yearbook
Caregivers of children with AD face unique challenges. There is a need to develop a more comprehensive and empirically validated scale for measuring caregiver burden in autism Adding domains to Caregiver Burden instruments may make them more applicable to this population. These domains may include difficulty in: Finding Respite Care, Making Treatment Decisions, Accessing Treatment Resources, and Understanding insurance constraints. Future research may focus upon the development of a caregiver specific scale for autism.
ABBREVIATIONS ZBI: Zarit Burden Interview; RCAS: Revised Caregiving Appraisal Scales; CSI: Caregiver Strain Index; FIQ: Family Impact Questionnaire; CGSQ: Caregiver Strain Questionnaire; PSS-Fr: Perceived Social Support from Friends; PSS-Fa: Perceived Social Support from Family; FSS: Family Support Scale; QSSP: Perceived Social Support Questionnaire; MOS-SSS: Medical Outcomes Study Social Support Survey; ISSB: Inventory of Socially supportive Behaviors; PSSI: Perceived Social Support Index; FFFS: Feetham Family Functioning Survey; MSPSS: Multidimensional Scale of Perceived Social Support; ISEL: Interpersonal Support Evaluation List; SSI: Social Support Index; SSSPCD: Social Support Scale for Parents with Children with Developmental Delays; SQ: Support Questionnaire
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