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Studies Investigating Health and Well-being of Caregivers of Children with Disabilities |
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| Author & Year |
Sample |
Factors Investigated |
Associations |
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| Barakat & Linney[46] 1992 |
29 families of children with spina bifida and without mental retardation and 28 families of children without handicaps |
Interrelation of maternal adjustment, mother-child interaction, and child adjustment |
Social support was related to higher maternal psychological adjustment and higher child adjustment Maternal psychological adjustment related positively to child adjustment in both groups |
| Beckman[25] 1983 |
31 parents of infants with disabilities |
Determine the extent to which specific kinds of behavior and characteristics of the child were related to stress reported by mothers |
All but progress were significantly related to amount of stress reported Number of parents in the home was related to amount of stress reported Temperament and social responsiveness, temperament and caregiving demands and caregiving demands and social responsiveness were strong associations Number of caregiving demands was most highly related to stress |
| Breslau, Staruch & Mortimer[5] 1982 |
369 mothers of children with a disability and 456 mothers of children without |
Psychological distress of mothers Child's dependence in ADL |
Mothers of children with disabilities had a significantly higher mean score on the depression-anxiety scale Condition type did not have a statistically significant effect on either maternal distress or depression-anxiety scales Dependence in ADL did have a statistically significant difference on depression-anxiety scale and on maternal distress, the more dependent the child the greater the mother's psychological distress The critical factor affecting maternal responses was the impact of the condition on the child's level of functioning |
| Cadman, Rosenbaum, Boyle & Offord[11] 1991 |
Epidemiological study Data from the Ontario Child Health Study of 1869 randomly selected families from the 1981 Census of Canada |
Individual parent mental health, family functioning in families of children with and without disabilities Physical health Family functioning |
Demographic and psychosocial variables were similar between the two groups, except for low income which was more common in the families with children with disabilities Parents of individuals with disabilities suffer an increased burden of mental health and adjustment problems, or may be more apt to seek assistance Overall the families were similar, contrasting to clinic based studies where the sample bias may skew the results |
| Dunst, Trivette & Cross[16] 1986 |
137 parents, 96 mothers, 41 fathers, of children in pre-school children in early intervention services |
Personal well-being, attitudes towards the child, family integrity, child functioning, parent-child play ops, and child behavior and development |
Single mothers have more financial problems Mothers reported poorer emotional and physical health and more time demands from child Those with more satisfaction with social supports reported fewer emotional and physical problems More pessimistic about older children's future Social support mediates well-being even with a child with a disability |
| Dyson[13] 1993 |
38 parents of children with disabilities and 34 parents of children without disabilities |
Parental stress and family functioning over two time periods |
High level of stability in parental stress and modest degree of consistency in family functioning in families with children with disabilities Families of children with disabilities had a higher level of stress at both time periods |
| Erikson & Upshur[45] 1989 |
202 mothers of children with and without disabilities |
Caretaking burden and social support |
Significant associations were found on difficulty of and time devoted to caretaking, number of tasks with which fathers helped, and satisfaction with support from family, friends, and community groups. |
| Freidrich, Wilturner & Cohen[26] 1985 |
112 of mothers with children with developmental delay |
Buffers of stress Utilitarian resources Energy/morale General and specific beliefs Social support |
Depression increased in mothers from time 1 to 2 |
| Frey, Greenberg, & Fewell[27] 1989 |
48 mothers and 48 fathers of children with handicaps |
Relations of child characteristics, family social network, parent belief systems and coping styles to parent outcomes |
Child characteristics predicted parenting stress Parental belief systems predicted all 3 parental outcomes Social network predicted family adjustment Psychological distress was low in mothers with "positive belief system, or non-critical family network" Support multidimensional evaluation of family characteristics that mediate the impact of a child with a disability |
| Friedrich[44] 1979 |
98 mothers of children with a variety of disabilities |
Predictors of coping behavior |
Marital satisfaction was best predictor of mothers coping, Residence of the child was also a factor, those with children in institutions were more stressed and mothers of female children reported more stress |
| Friedrich & Friedrich[17] 1981 |
34 parents of disabled children compared to a control group of parents of children without disabilities |
Marital satisfaction, social support, religiosity, psychological well-being, resources and stress |
Families of children with disabilities experience more stress and less marital satisfaction, psychological well-being, social support and religiosity |
| Gowen, Johnson-Martin, Davis Goldman, & Applebaum[14] 1989 |
41 infants, 21 with a disability, 20 without and their mothers (varying diagnoses) Multiple time survey. 11. 15, 19 and 29 mos. |
Depression in mothers related to child characteristics or social support. |
Perception of how difficult the child was to care for was positively related to maternal depression at 17 and 29 mos. No significant difference in mothers in relation to parenting competence |
| Silver, Westbrook, & Stein[55] 1998 |
770 randomly selected in 1991 and 1992 from two samples with children under 18 year of age |
Health status inventory Parents psychological distress |
Grouped parents by 3 domains, functional limitations, reliance on compensatory mechanisms, and service use Chronic health condition was a key factor Risk of psychological distress may depend upon the types of consequences experienced by the children, functional impairment of children related to poorer parental adjustment Parents with children with functional limitations may be at high risk |
| Kazak & Marvin[15] 1984 |
56 families with a child with SB and a group of 53 families without a handicapped child, matched for child's |
Roles played and social network |
Mothers experienced more stress, fathers were similar to control. Generally, higher levels of stress and distinct network structures were found for the families with handicapped children. Number in network doesn't relate to effectiveness of group |
| Leonard, Johnson, & Brust[30] 1993 |
Two groups, those "OK" and "NOT OK" (more severely impaired) 132 of 220 selected families, only women's responses were used |
How the caregivers were managing giving care to children with disabilities |
Mothers of those "NOT OK" were in poorer physical and mental health, had greater demands placed on their time and finances, and received less emotional support from family and friends. Special programs provided some assistance but not enough to meet their needs |
| McKinney & Peterson[12] 1985 |
67 mothers, convenience sample, Children with Developmental Disabilities (DD) |
Predictors of stress, perceived control, social support, unusual caregiving demands, programs |
Peer support one of the most important factors Sense of competence was only predictor of perceived locus of control Children with DD are a source of stress, place > demands on parents |
| Quittner, Glueckauf, & Jackson[58] 1990 |
96 mothers of deaf children, and 118 matched controls |
Contrasted the "buffer" model of social support with an alternative mediator model for ongoing parenting stress vs. life event stress |
Path analyses suggested social support mediated the relationship between stressors and outcomes Chronic parenting stress associated with lowered perceptions of emotional support, and greater depression and anxiety Parenting stress accounted for substantial variance in psychological distress scores in contrast to life events stress |
| Saddler, Hillman, & Benjamins[29] 1993 |
139 two-parent families of children with cerebral palsy (n = 48), diabetes (n = 46) and able bodied children (n = 45) |
Effect of visibility or severity of disability on family functioning |
Neither visibility nor severity of disability impacted family functioning, families with children with disabilities exhibited high levels of family functioning similar to control group |
| Sloper & Turner[9] 1993 |
107 families, mothers and fathers completed questionnaires separately |
Descriptor variables of child characteristics, life events, satisfaction with life and adaptation to the child |
High levels of psychological distress, especially for mothers, greater disability and communication problems in child were risk factors, for fathers, child gender and feeding problems showed significant associations with outcomes |
| Trute & Hiebert-Murphy[32] 2002 |
Random sample of 87 families of children with developmental disabilities, final n = 64 |
Interviewed twice, initially while children with developmental disabilities were in the preschool years, and again 7 years later |
Interview tool found to predict parental stress |
| Wallander, Varni, Babani DeHaan, Thompson Wilcox, & Banis[10] 1989 |
50 mothers of children with either Social Behaviour (SB) or Cerebral Palsy (CP), |
Utilitarian resources, Child adjustment Psychosocial family resources Service utilization |
Social environment associated with mental health, social functioning but not physical health, Child's disability status not significant assoc with maternal adaptation, Longer marriage and larger family were predictive of poorer social functioning Behavioral problems were associated with poorer physical health not strongly, Better marital satisfaction and a larger support group but less family support were predictors of better social effects |
Raina et al. BMC Pediatrics 2004 4:1 doi:10.1186/1471-2431-4-1 |
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