Table 1 Studies Investigating Health and Well-being of Caregivers of Children with Disabilities

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