MENTAL HANDICAP VOL. 16 DECEMBER 1988

PRIDE AND PREJUDICE? Factors influencing “uptake” of family based respite care services

Carol Robinson

Introduction Today, the vast majority of children

with handicaps live at home with their natural or foster families. Caring for a child who has a handicap is now widely acknowledged to be both tiring and potentially stressful (Wilkin, 1979; Pahl and Quine, 1984). In order to help parents cope with their caring role, a large number of family based respite care schemes have been se t u p throughout the United Kingdom. These enable parents to obtain a break from the “burden” of care, by providing substitute carers for their child for short periods (Robinson, 1984).

The Avon Family Support Service (AFSS) is one such scheme. It has been operating since 1978 and now provides respite care throughout the County of Avon to over 300 families. The service is organised into 12 local schemes based on special schools, each with at least one social worker attached to it. These workers coordinate the schemes and link up user families with carers so that the children can be cared for in the carers’ homes for anything between half-a-day and a fortnight. It is hoped that, by providing this form of relief care, families will benefit from the rest and will be able to continue coping with the care of their children.

Whilst Avon probably has the largest respite care scheme in the country, with over 80 paid carers, only 35 per cent of families of children with a mental or physical handicap who attend a special school in the County were found to be making use of it. Consequently, when research was undertaken to evaluate the AFSS, it seemed important to discover what factors might be preventing families from using the service. This was d o n e by c o m p a r i n g t h e soc ia l c i r c u m s t a n c e s , a t t i t u d e s , a n d experiences of families who use the scheme with those of families who do not.

American studies concerned with respite care have emphasised the different characteristics of user and non-

The research findings described in this article are drawn from a large-scale evaluative study of one of Britain’s largest family based respite care schemes for families with a child who is handicapped (Robinson, 1986). It looks at the evidence which helps to answer the question: “Why don’t all families eligible to use this respite service do SO?”.

The findings suggest that a number of social and demographic characteristics found to influence “uptake” of respite care services in America are equally relevant in Britain, but that a number of other variables are also important. These additional factors are associated with a lack of information about the services on offer, families’ past experiences of family based services, and parents’ attitudes towards their parenting role.

user families and a review of research by Cohen and Warren (1985) highlighted three major areas of contrast:

0 t h e l e v e l s of p h y s i c a l dependency of the children;

0 the availability of informal support networks;

0 the extent to which children e x h i b i t e d c h a l l e n g i n g (disturbed) behaviours.

Data collected in semi-structured interviews with users (N= 104) and from completed postal questionnaires from n o n - u s e r s ( N = 197) p e r m i t t e d comparison of the two groups on the first two of these factors, but not the third. However, a number of additional dimensions were examined. These were as follows:

0 the structure of the family, including the number and age of children, the number of parent figures in the home;

0 previous contact and experience wi th t h e Family Suppor t Scheme and other relief care services;

0 parents’ attitudes towards the service and their responsibili- ties as parents.

Each of these issues will be discussed in the light of the American findings.

Physical dependency amongst the children

A study by Cohen (1980) of families with a child who had cerebral palsy revealed that those using respite care services experienced greater difficulty in caring for their family members with disabilities than non-user families. This appeared to be related to the inability of the children to care for themselves, communicate, and move about unaided. Similarly, Halpern (1982) and Libb (1983) concluded that users experienced more severe problems in caring for their family members with handicaps than non-users, largely because user families’ members had more physical handicaps.

Results from the Avon study, which were based on a somewhat crude scale of functional dependency, revealed no such differences between user and non- user children.The scale employed comprises 10 items concerned with everyday living, such as washing, dressing, and toileting. Parents were asked to state whether their child needed help with each of these tasks. Children for whom 10 “yes’’ responses were ob ta ined were cons idered most dependent on outside help; those with scores of 0 least. Table 1 shows that for both user and non-user groups scores were very similar on each task and the overall dependency levels of the children were also s imi la r . T h e level of

CAROL ROBINSON is a Research Associate in the Department of Mental Health, University of Bristol, 41 St. Michael’s Hill, Bristol BS2 8DZ.

~ ~ ~

@ 1988 British Institute of Mental Handicap 143

Non-users (N= 197) Users (N= 104)

Number of Percentage Number of Percentage children of children children ,,f

Task needing help needing help needing help needing help

Washing 149 75.6 87 83.7 Dressing 145 73.6 79 76.0

38 36.5 Feeding 61 31.0 Drinking 42 21.3 22 21.2 Toileting 124 68.0 63 60.6 Keeping occupied 132 67.0 70 67.3 Communicating 123 62.4 65 62.5 At night 107 54.3 70 67.3 Mobility 91 46.2 48 46.2 Supervising 172 87.3 97 93.3

~

dependency does not therefore appear to have a significant bearing on the levels of uptake of the AFSS.

Physical dependency, however, was found to be a factor influencing the amount of care that users received. The most heavily dependent children (with scores of 7+) received significantly less care on the scheme than those with a lower (6 or less) dependency rating ( ~ 2 . 7 , p=O.OOl).*

now receiving additional help from family or friends.

Others within the group of “past users” commented that the service was no t s u i t a b l e fo r t h e i r ch i ld or themselves. Of these, 12 per cent had stopped using the service because their child had been upset by the separation from parents or brothers and sisters. Two other families (six per cent) considered that their child was not receiving enough individual attention whilst staying with the support family. A further two (six per cent) thought that

Informal support networks The availability of outside sources of

help was found to influence the levels of usage by Cohen (1980) and Halpern (1982). Similarly, in another study Brickey (1982) agreed that “the presence of adequate natural support networks in t h e f o r m of e x t e n d e d f a m i l y relationships is one major reason” for the limited interest in respite care found.

Although large, extended family networks were generally rare in Avon, non-user families did tend to have more informal sources of support than user families. For example, only three per cent of non-users compared to 26 per cent of users said they had no-one who could care for their child at short notice. In addition, 26 per cent of the non-user group said they did not feel the need for any further help to care for their child, whereas use of the AFSS by the user group could be seen as an indicator of need for outside help. Moreover, although the largest percentage of children in the non-user group had first stayed away from home overnight with a relative, the first time children in the user group had stayed away from home overnight was most commonly with a support worker on the scheme.

* An independent ‘t’ test was used to measure statistical differences between the average amount of care received by the two groups.

These small pieces of evidence, put together, suggest that non-user parents are more likely to have a relative or friend able to care for their child overnight, at short notice, than user parents .The lack of an adequate informal support network appears to be an important factor affecting usage of respite care services on both sides of the Atlantic.

The structure of the family In addition to external forms of

support, the internal supports and demands within the immediate family were found to be different amongst user and non-user families.In particular, a much higher percentage of non-users had only one child at home aged 18 or u n d e r , usua l ly t h e person wi th handicaps (30 per cent compared with 10 per cent amongst users), and a lower percentage had either two or three children (36 per cent compared with 49 per cent, and 23 per cent compared with 34 per cent). Large families with four or more children accounted for less than 10 per cent of both samples.

The percentage of single parent families in the user sample was high (1 8 per cent) compared with five per cent in the general popul-ation. However, there was no evidence available for the non- user group to indicate whether it contained a higher proportion of single parent families than the user sample.

Previous contact with the AFSS and other services

Of the non-user respondents, 17 per cent had used or had tried to use the AFSS in the past. Amongst this “contact group” five families (15 per cent) felt t h e i r n e e d f o r t h e se rv ice had diminished, either because they were finding their caring role easier as their child grew older or because they were

therefore, had the impression that the scheme was only suitable for “well adjusted” or “easier” children. The parents of another child had been told that their child was too heavy for all the locally available carers and the support family suggested lived too far away for the parents to consider it worthwhile to use their services.

A further 23.5 per cent of families who had previous contact with the AFSS had found there had been no suitable support family available to take their child, particularly if they lived in a rural area. Nearly 18 per cent of “past users” had applied to use the service, but had heard nothing more about their request. It is possible that the paperwork had been l o s t , t h e r e h a d been a communication breakdown, or even that a decision had been made to reserve a limited resource for other families whose need was considered more urgent.

One other plausible explanation for non-use of the AFSS is that families have access to other formalised relief care. However, results indicated that only five per cent of the non-user group had used a mental handicap hospital, 11 per cent a general children’s ward, and 18 per cent a holiday play scheme, in the previous three years. Although 17 per cent had used some form of residential care (a higher figure than amongst the user group where it was 11 per cent), overall the parents in the non-user group were less knowledgeable about the range of relief care services on offer and less likely to use any of them: 46 per cent of the non-user group were using no respite facilities. On the other hand 42 per cent of the user families were using at least one other form of formal respite service in addition to the AFSS and 15 per cent were using two additional services.

A shortage of information about the AFSS was widespread amongst the non- user group. Indeed, this was the reason

144 @ 1988 British Institute of Mental Handicap

MENTAL HANDICAP VOL. 16 DECEMBER 1988

15.7 per cent gave for not using the scheme, and it was a particularly important factor amongst the Asian respondents. This suggests that specific advertising, targeting for e thnic’ minor i ty groups , is requi red as “blanket” advertising has proved inadequate. Lack of information was also one of the factors that Hagen, Reasnor, and Jenson (1980) and researchers from the California Institute on Human Services (1982) identified as preventing families from using respite care services.

Misinformation was also a factor, albeit a lesser one, with one per cent of non-user families considering that the service would be too expensive to use. In reality, it is free to all families with a school-age child. However, three per cent of all respondents had recently applied to use the service and another five per cent intended to apply. (See Table 2 for further details.)

Parents’ attitudes towards the service

Given t h e l imi ted amoun t s of knowledge that many of these familes appeared to have, it is interesting and noteworthy that there were many families who had never used the service, knew no-one else who used it, and yet had very negative views about it. From Table 2 it can be seen that there were twenty-five families (13 per cent of respondents) who did not think that children with handicaps should be cared for by anyone outside the family. Some parents expressed very strong feelings, judging other parents as being “too willing to farm their kids out”. For others it was more a sense of pride in coping alone, and in being good parents in spite of the difficulties, which seemed to account for their non-use of the scheme.

For some families (7.6 per cent) concerns about the child’s ability to cope with the separation or the disturbance to routine associated with using the service were a deterrent to use. A further 1.5 per cent thought the child’s health problems would cause difficulties to carers and 2.5 per cen t were conce rned a b o u t burdening another family with the care of their child. One family (0.5 per cent) said they had been warned that their child would be seen as “different” if they used the service. One per cent of families felt concerned about selection and quality of the carers, particularly about the possibility that they were only doing the work for the money

Type of response

Service not required Do not feel the need of help - child’s ;are does not present any problems Previously used service but need for relief has diminished Other relief care available at present Parents concerned about effect on child Child has many health problems which make it difficult to arrange placements The child would not like it or it would be detrimental to the child Do not want child to be seen as different Parents’views of substitute carers and own parenting role Feel the child should be own responsibility and should be kept within the natural family Feel that child would be too much of a burden - would feel guilty Worried about the selection and quality of carers PracticaYadministrative inhibitors No suitable carer has been found Live too far away from any carers Have applied to use the service, but social worker has lost contact Insufficient/misinformation Have had insufficient information about the scheme The expense involved (the service is free) Poor experiences of service Child upset by separation from f a d y Child lacked individual attention in support family Support worker found difficulty caring for the child Child too heavy for available carers Other responses Have just applied to use the service Would like to use the service - intend to apply No responseldo not know

TOTALS

hmber of all

Zspondents

47

5 7

3

15 1

25

5

2

8 2

6

31

2

4

2

2 1

6

10 13

197

Percentage of all

espondents

23.9

2.5 3.6

1.5

7.6 0.5

12.7

2.5

1 .o

4.1 1.0

3.0

15.7

1.0

2.0

1 .o

1.0 0.5

3.0

5.1 6.6

100.0

Humber of “contact group”

5

3

8 2 6

4

2

2 1

33

Percentage of “contact

group”

15.1

9.1

24.2 6.1

18.2

12.1

6.1

6.1 3.0

100.00

TABLE 2. Frequency distribution of reasons given by parents for not using the Avon Family Support Service

Such concerns were not unique to the to influence the initial uptake of non-user families. Concern about the quality of carers was present amongst 15 per cent of the user group in the present study and has been reported to be an issue in several American studies of respite care (Hagen, Reasnor, and Jenson, 1980; Cohen, 1980, 1981; and Halpern, 1982) as well as in Stalker’s (1987) research on the Lothian Scheme.

Discussion and conclusions Overall, four of the five variables

examined in the Avon Study were found

services. These were:

0 t he existence of informal

0 the structure of the family; 0 previous contact with the

respite care scheme; and 0 parents’ attitudes towards the

service. Data relating to the first two of these

areas were drawn from an analysis of the social and demographic details which

support networks;

@ 1988 British Institute of Mental Handicap 145

MENTAL HANDICAP VOL. 16 DECEMBER 1988

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were available on both the user and non- user groups. Information on the last two variables derived directly from the r e s p o n s e s of n o n - u s e r s o n l y . Consequently, whilst it would be desirable to indicate the relative importance of each of these factors, this is not possible. Nonetheless, it is possible to gain some idea of what parents themselves view as the most important reasons for non-use of the service (see Table 2).

Added to this, there is an obvious link between the social and demographic evidence and respondents’ stated reasons for not using the service. For example, families with more informal supports inside and outside the family and fewer demands within the family, such as other young children, were likely to give responses which fall under the heading of “service not required”. Such a response accounted for over 25 per cent of all non-user responses. Since they have n o t i n d i c a t e d o t h e r w i s e , presumably some of the families would consider using the service in future if their support networks became less reliable or unavailable.

In contrast, the negative comments of some parents intimated that they would not consider using the service under any circumstances. This was particularly true for the 12.7 per cent of parents who viewed the child’s care as entirely their responsibility and who expressed strong hostility to the idea of substitute care.

Other negative attitudes also inhibited use of the service. These included fears that the service would be harmful to the children involved and a concern that carers would be unwilling or unable to cope. Altogether responses which can broadly be described as indicating negative attitudes accounted for a further 26 per cent of responses. Whilst only 17 per cent of the non-user respondents had been in contact with the service previously, many of them had unsatisfactory experiences of it. In particular, a failure on the part of social workers to follow u p individual applications for help and a lack of

suitable carers to meet the needs of others demonstrated the importance of having a well-organised and well- resourced service.

Another factor found to be important was the shortage of information about the service available to families. Indeed, a lack of information or receipt of misinformation accounts for 16.7 per cent of parents’ reasons for non-use of the scheme, and indicates the need to provide clear, detailed information to potential users using an appropriate medium. In particular, there is a need to target advertising to reach ethnic minority groups as this research suggests that many such parents were unaware of, or had not assimilated, previous advert is ing mater ia ls . However, advertising may not, in itself, be sufficient to encourage uptake of services by these parents and the service may need to adjust to meet their specific r e q u i r e m e n t s , fo r i n s t ance , by recruiting carers of the same ethnic origins.

As noted previously, only the level of dependency of the chi ldren was insignificant as a discriminator of initial uptake by families although this had a bearing on the amount of care families

received once they had registered to use the service. Unfortunately, from the evidence available it is not possible to say whether the negative relationship between higher dependency levels and the amount of care received is as a result of the parents’ unwillingness to ask for more help or the carers’ reluctance to provide it. It seems most likely that it is a subtle combination of both these factors. Clearly, this is an aspect of the service that requires further investigation.

Finally, if family based respite care services are to overcome prejudices, allay anxieties, and provide a service that meets the needs of all eligible families, they need to be well-organised and well- resourced, both in human and financial terms. In addition, they must take a c c o u n t n o t on ly of t h e social circumstances of potential users but also of “consumer opinion” in its broadest sense.

Acknowledgements The author is grateful to the Mental

Health Foundation and Avon County Council for funding the research on which this article is based. Thanks are also expressed to Mrs. Anne Williams for typing the manuscript.

REFERENCES Brickey, M. Preliminary Report on

Respire Care Needs in Four Appalachian Counties. Athens, OH: Ohio University, 1982.

California Institute on Human Services. Respire Services for C a l i f o r n i a n s w i t h Spec ia l D e v e l o p m e n t a l N e e d s . Sacramento CA: California State Counci l o n D e v e l o p m e n t a l Disabilities, 1982.

C o h e n , S . Final R e p o r t : demonstrating model continua of respite care and parent training services for families ofpersons with developmental disabilities. New York: City University of New York, Centre for Advanced Study in Education, 1980.

Cohen, S . , Warren, R. Respite Care Principles, Programs and Policies. Austin, Texas: Pro-Ed Inc., 1985.

Hagen, J., Reasnor, R., Jenson, S. Report on Respite Care Services in I n d i a n a . S o u t h B e n d , I N : Northern Indiana Health Systems Agency, 1980.

Halpern, P. L. Home-based Respire Care and Family Regenerative Power in Families with a Retarded Child. Ann Arbor, MI: University

Microfilms International, 1982. Libb, W. Respite care which meets

community needs. (1983 Annual Conference paper.) Washington DC: American Association on Mental Deficiency, 1983.

Pahl, J . , Quine, L. Families with menral1.v handicapped children: a s t u d y o f s t ress and serv ice response. Canterbury: Univ. Kent Health Services Research Unit, 1984.

Robinson, A. Respire care services for families with a handicapped child. (National Children’s Bureau briefing paper.) London: NCB, 1984.

Robinson, C. Avon Short Term Respire Care Scheme Evalyation Study - Final Report (Parts I and ZI.) Bristol: Bristol University, 1986.

Stalker, K. Share the Care - a research report of Lothian’s respite care scheme for children with Handicaps. Lothian: Lothian Regional Council Department of Social Work, 1987.

Wilkin, D. Caring for the Mentall-v Handicapped Child. London: Croom Helm, 1979.

146 0 1988 British Institute of Mental Handicap