Journal of Child and Family Studies, Vos 3, No. 4, 1994, pp. 403-412

Grandparents' Support for Families Who Have Children with Disabilities

Garry Hornby, Ph.D. t-~ and Tracey Ashworth, B.Sc. 2

This study was designed to assess the levels of support provided by grandparents for families who had grandchildren with disabilities. A questionnaire survey of parents was used to assess the levels of practical, financial and emotional support they received from the children's grandparents. Parents were also questioned about their satisfaction with this support. Overall levels of support were low but most parents were nevertheless generally satisfied with the support they had received. However, a quarter of the grandparents were considered to have added to the parent's problems and almost a third of the parents expressed a wish for more support from grandparents.

KEY WORDS: social support; grandparents; parents; children with disabilities.

Approximately 70% of people in western societies become grandpar- ents (Smith, 1990; Sonnek, 1986). The average age for becoming a grandparent is 50 years for women and 52 years for men, and most grand- parents are likely to maintain this status for a further 25 years. Grand- parenthood is therefore an important social institution (Hader, 1965). Until the last decade, however, there appears to have been a lack of interest and a paucity of literature on grandparents and the grandparent role (Bengston & Robertson, 1985). There have been few studies which have specifically concerned themselves with assessing the type and amount of support pro- vided to families by grandparents.

Lecturer, School of Education, University of Hull, England. raduate Student, School of Education, University of Hull, England.

3Con'esi~ndence should be directed to Garry Hornby, School of Education, University of Hull, Hull, North l-lumberside, HU6 7RX.

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1062-1024~1/1200-0403507.00/0 �9 1994 Human Sciences Pl'ess, Inc.

404 Hornby and Ashworth

In a review of the existing literature on grandparents, Sonnek (1986) suggested that the typical grandparent role is to provide support to the nuclear family. This is evident in numerous instrumental supports, includ- ing: baby-sitting; financial aid to the children's parents; gifts to the children; befriending the children; providing social visits; and, having the children for holiday periods. Such a support network is reputed to reduce stress and enhance family functioning, as well as to influence the well-being of the children in the family (Byrne, Cunningham, & Sloper, 1988).

When a family is involved in a crisis it is usual for the extended family to provide support. The discovery of a disability in early childhood is re- garded as such a family crisis (Gabel & Ketch, 1981; Seligman & Darling, 1989). How well parents cope may well depend, to a large extent, on the help and support they receive from extended family members. The grand- parents are often the first people contacted after the parents learn of the disability and, therefore, can be a key element of the support network avail- able to parents (Vadasy, Fewell, & Meyer, 1986).

Seligman (1991) has suggested that there are two types of grandpar- ents, those who are stressors and those who are resources to the nuclear family. Similarly, Vadasy et al. (1986) have suggested that if grandparents are unsupportive, unaccepting and not understanding of the situation, they may become a source of considerable stress to the family. Grandparents who deny the child's disability in an attempt to avoid the pain, often be- come a burden for the parents (Gabel & Ketch, 1981; Seligman, 1991). Such reactions from the grandparents may even lead parents to isolate themselves from their extended family (George, 1988). In contrast, many grandparents are supportive of their children and become an invaluable resource for the parents of the disabled child. Such support can help the parents as they try to cope with their own feelings and problems (Berns, 1980; George. 1988; Seligman, I99I).

There has been only a limited amount of research on grandparents of children with disabilities. Most studies which have reported on grand- parents have had other family members, typically mothers, as the focus. For example, in their survey of mothers of children with Down's syndrome, Byrne et al. (1988) found that differences existed in the frequency and amount of support from grandparents. More support was received from maternal grandparents than paternal grandparents. Harris, Handleman, and Palmer (1985) also found that significantly more support was provided by the mother's than the father's family. Further, they reported a high de- gree of empathy existed between mothers and maternal- grandmothers. Farber (1959) found that maternal grandmothers were perceived as helpful and positive by mothers, whereas paternal grandmothers were perceived as

Grandparents' Support 405

unsympathetic and blaming. Waisbren (1980) found that mothers who per- c.eked their in-laws to be supportive had more positive relationships with their disabled children than those who were viewed as nonsupportive.

The aim of this study was to investigate the support given by grand- parents to families with disabled children. Specifically, the study was designed to assess the type and amount of support provided by grandpar- ents; to consider how the parents viewed the support given by the grandparents; and, to describe any differences in support offered by ma- ternal and paternal grandparents.

METHOD

Subjects

The participants were 25 parents of children with severe learning dif- ficulties. Twenty-two questionnaires were completed by mothers (88%) and three by fathers (12%). Twenty of the parents involved in the survey had a partner who lived with them. The remaining five parents lived alone, either through death of, or divorce from, a spouse. The number of children in each family, including the disabled child, ranged from one to six. The age range of the children with the disability was between 3 and 15 years, with a mean of 9.2 years and a standard deviation of 4.1. Of the children, 18 (72%) were boys and 7 (18%) were girls. The age at which the disability was diagnosed varied greatly. About 52% of parents were aware of their children's disability before the age of one and 36% by the age of two or three. The children's disabilities included cerebral palsy, Down Syndrome, mental retardation, brain damage, Fragile X Syndrome, epilepsy, autism, Rett's Syndrome, quadriplegia and profound deafness, with many having more than one disability.

The 25 parents reported on a total of 71 living grandparents: 38 ma- ternal parents and 33 paternal parents. Twenty-two grandparents (32%) were considered to have poor health. Of these, 13 were maternal parents and 9 paternal parents. Sixty percent of grandparents were over 60 years of age, 25% of whom were over 70 years of age. Only 6% of grandparents were under 50 years of age. A third of all grandparents (33%) lived within five minutes of their children's home, and a further 42% lived within 20 minutes. A small proportion of grandparents (16%) lived over an hour's

journey away. One of the grandparents lived with the parents.

4106 ilornby and Ashworth

Measure

The instrument used was a questionnaire which was self-explanatory and designed for ease of completion by parents themselves (Oppenheim, 1966; Sudman & Bradburn, 1982). The questionnaire investigated grand- parent support for families with disabled children. The main section of the questionnaire included 12 questions which focused on: frequency of grand- parent visits and baby-sitting; help with shopping and household chores; taking grandchildren out or having them stay overnight; financial assistance; being understanding and discussing problems; and, parents' satisfaction with the support received. Parents were asked to check boxes to indicate various levels of support, for example from "frequent" to "never," for ma- ternal and paternal parents. The other section of the questionnaire requested demographic information such as the child's age, gender and dis- ability; and, grandparents' ages, state of health and distance from the family home.

Procedure

Questionnaires were distributed to teachers at the special school which the children attended in order that they could be sent home to par- ents in the children's school bags. A cover letter was attached to the questionnaire explaining the purpose of the study and asked for the par- ents' cooperation. A stamped, self-addressed envelope was included with each questionnaire in order to facilitate their return. Sixty questionnaires were sent out to parents, of which 26 were returned. One was incomplete and was therefore not included in the analysis, making the final sample 25. This gives ~i response rate of 42%, which compares favorably with simi- lar surveys of this population (e.g., Regan & Speller, 1989).

RESULTS

Visiting

About 39% of grandparents visited at least once a week, 32% visited less than once a month, and 20% never visited their children and grand- children. Of the maternal grandparents, 50% (19) visited once a week or more, whereas only 27% (9) of paternal grandparents visited this fre- quently. Thirteen percent of maternal grandparents never visited and over a quarter of paternal grandparents (27%) never visited.

Grandparents' Support 407

Baby-Sitting or Child Minding

Grandparents were reported to rarely baby-sit or mind their disabled grandchildren. Fifty-six percent of grandparents never baby-sat, and a fur- ther 18% did so less than once a month. Only 11% of grandparents baby-sat once a week or more. Forty-seven percent of maternal grandpar- ents as compared with 39% of paternal grandparents did some baby-sitting.

Help with Errands and Shopping

About 72% of grandparents never did errands or shopping for their children. However, a small minority of them (13%) did help with these chores at least once a week. Twenty-two percent of maternal grandparents helped with errands and shopping at least once a week as compared to only 3% of paternal grandparents. When paternal grandparents (21%) did provide such help, it was typically less than once a month. Help with er- rands or shopping was never provided by both sets of grandparents in 70% of cases.

Help with Household Tasks

Support in the form of helping around the house was never given by 78% of grandparents and a further 10% helped out less than once a month. Only 8% of grandparents helped once a week or more. Thirteen percent of maternal grandparents helped at least once a week as compared to only 3% of paternal parents. About 68% maternal and 88% paternal grandpar- ents never helped out with household tasks.

Outings Provided by Grandparents

About 16% of grandparents took their grandchildren with disabilities on outings at least once a fortnight, but a majority of them did not take their grandchildren out at all. Twenty-two percent of maternal grandparents and 15% of paternal grandparents took their grandchildren on outings at least once a month.

Overnight or Holiday Visits

Overnight visits or holidays with grandparents were very rare. Only 6% of grandparents looked after their disabled grandchildren in their own

408 Hornby and Ashwerth

homes once a month or more. Such visits were never provided by 72% of grandparents and only infrequently (less than once a month) by another 22%. There was little difference between maternal and paternal grandpar- ents' support in this area.

Financial Help

About 20% of grandparents regularly or occasionally provided parents with financial assistance, but 63% never provided sueh help. About 16% of maternal and 12% of paternal grandparents provided financial support on a regular basis, but 44% of maternal and 85% of paternal grandparents never provided financial support. Many more maternal (29%) than paternal (3%) grandparents provided such help, even on an infrequent basis.

Understanding Shown

When questioned about how understanding grandparents were about problems related to their grandchildren with disabilities, 52% of grandpar- ents were repor ted to be always unders tanding, 13% were never understanding, and a further 11% were rarely understanding. Maternal grandparents (89%) were reported to be generally more understanding than paternal grandparents (61%). Further, 11% of maternal parents and 39% of paternal parents were rarely or never understanding.

Discussion Problems

How parents felt about discussing problems regarding their disabled child with their own parents varied greatly. Overall, 25% of parents felt that grandparents were not open to discussing problems, another 25% were only occasionally available for such discussions, and about 33% were always will- ing to listen. Parents reported that they were never able to discuss problems with 43% of paternal grandparents and 11% of maternal grandparents.

Satisfaction with Grandparent Support

About 54% of the grandparents were reported to have been of little or no support at all to the parents. More paternal (67%) than maternal grandparents (42%) provided very little or no support. Further, 33% of paternal grandparents were considered to have provided a lot or some sup- port as compared to 58% of maternal grandparents. Although 52% of the

Grundlmrents' Support 409

grandparents had not helped their children to any real extent, the remain- ing 48% had not added to the problems of the family either. However, 24% of grandparents were reported to have been an added problem either some or a lot of the time. There were no real differences between maternal and paternal grandparents on this issue. Only 22% of the parents reported that they would have liked a lot more support from grandparents, with support being desired from 30% of paternal and 13% from maternal grand- parents. Also, 61% of grandparents were considered to have provided just the fight amount of support for the family.

DISCUSSION

The levels of practical, financial and emotional support which grand- parents were reported to provide appear generally low in comparison with the findings of previous studies conducted with grandparents of children with disabilities (e.g., Vadasy et al., 1986) and grandparents of non-disabled children (Oabel & Kotch, 1981; Sonnek, 1986). For example, the frequency of grandparent visiting varied greatly. While over a third of the grandpar- ents visited at least once a week, one in five grandparents never visited. Practical support, such as baby-sitting, outings for the grandchildren, shop- ping and doing household chores, was rarely provided by grandparents. These findings are very different from those reported by Vadasy et al. (1986), who found that over one half of the grandparents visited at least weekly and baby-sat at least monthly. However, Vadasy et al.'s results were obtained from a small, middle-class sample of North American grandpar- ents whereas, in a British study conducted by Byrne et al. (1988), low levels of practical support from grandparents were reported.

Similar findings were noted for financial support, which was reported never to have been provided by over half of the grandparents in the present study. One in five grandparents helped out regularly with money, but this is in sharp contrast to the findings of Vadasy et al. (I986) where over half of the grandparents helped out regularly or occasionally with money. How- ever, many of the families involved in the Vadasy et al. study were affluent and therefore the grandparents were perhaps more able to provide financial support.

The grandparents in this study were much more forthcoming with emotional support. Parents reported that one half of all grandparents were always understanding about any problems related to their child with a dis- ability, and a third of them were always willing to listen to parents discuss problems. Many factors may influence the amount of support that grand- parents are able to provide. For example, if the grandparents are old or

410 Hornby and Ashwortb

unwell, the parents may not wish to burden them. Given that 60% of grand- parents were over 60 years of age, 25% were over 70, and 32% were considered to have poor health, it is possible that these factors influenced the low levels of support provided by the grandparents in this study.

How parents viewed the support they had received varied greatly. When asked to assess whether the support they had received from their parents had been of help to them, almost half said they had benefitted from the support, but about the same number of parents reported that the support they had received had been of little or no help. Further, many parents said that the grandparents had not added to their problems either. Thus, the data appear to reflect two types of. grandparents as suggested by Seligman (1991), where one is a stressor for the family and the other is a resource.

The reasons for the low levels of grandparental involvement are likely to affect parents' views of support. If lack of involvement was due to poor health, old age, or problems with travelling, then parents were unlikely to feel dissatisfied. If, on the other hand, support was not forthcoming because grandparents were uninterested, or if the relationships between the family members were poor, then parents were apt to be less satisfied. Further, some parents may not want any contact with grandparents because of the problems such involvement may cause. Indeed, in situations where grand- parents are unaccepting of the disabled child, their lack of support may be a better alternative than grudging and unpleasant support to parents who are already under great personal strain (George, 1988).

There were considerable differences between the support provided by mothers' and fathers' parents. On virtually all major variables, paternal grandparents were less involved than maternal grandparents. A possible explanation for the difference could be that, as the questionnaire was com- pleted in almost all cases by mothers, this could have biased the results. Mothers would almost certainly know their own parents better than their husband's parents, and may feel more able to ask their own rather than their husband's parents for support. Further, because this study only sur- veyed parents ' perceptions of the support they received and did not investigate the actual support they received from grandparents, these find- ings must be treated with caution. Clearly it would be useful to survey the grandparents themselves regarding their support of their disabled grand- children to estimate the concordance between the grandparents ' and parents' views of what the grandparents provide. Another reason for cau- tion in interpreting the results of this study is the small and unrepresentative sample of parents who responded to the questionnaire survey. It is perhaps not surprising that low response rates to postal surveys are achieved with

Grandparents' Support 411

parents who have the demanding task of caring for children with severe learning difficulties.

There are two major implications of these findings for professionals working with families of children with disabilities. First, they should realize that little assistance may be forthcoming from the grandparents and there- fore they should help parents identify other possible sources of support. Second, grandparents may need assistance in adjusting to the reality of hav- ing a grandchild with a disability. It is likely that most grandparents will have received little help in this regard, and once they have come to terms with their grandchild's disability they may be in a better emotional state to provide social, emotional and financial support to their children and grandchildren.

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