[this needs page numbers from proof]
Keywords: Learning disability, parents, family carers
[head] Family carers’ opinions on learning disability services
AUTHORS: Iliana Sardi, MSc Health Psychology, Clinical and Counselling Psychology, is research fellow; Ruth Northway, PhD, MSc (Econ), FRC, RNLD, ENB 805, Cert Ed (Fe), is professor of learning disability nursing; Robert Jenkins, MSc, Dip Soc Studies, RNLD, Cert Ed (FE), is divisional head, learning disability; Rachel Davies, CPsychol, PhD, Cert (Couns), Cert (Research Methods), is senior lecturer; Ian Mansell, MSc, DipN (Wales), Cert Ed (FE), RNMH, RMN, is principal lecturer; all at University of Glamorgan.
ABSTRACT: Sardi, I. et al (2008) Family carers’ opinions on learning disability services. This is an extended version of the article published in Nursing Times; 104: 11, xx-yy.
BACKGROUND: Parents and family carers of people with learning disabilities should be involved in strategic planning to ensure that policy and service developments reflect their needs.
AIM: To answer the question ‘What are the views of parents and family carers within the unitary authority regarding current and future service developments?’
METHOD: Twenty-nine participants took part in focus groups, and semi-structured interviews were held with a further four participants. These were taped, the data transcribed and transcripts read by two members of the research team to identify emerging themes.
RESULTS: Participants highlighted difficulties such as lack of information, the need to be proactive and having to fight for service provision. They found it hard to identify their hopes for the future and fears often centred on what would happen to their relatives after they could no longer provide support.
CONCLUSION: While some progress is evident, further development is needed if services are to meet the needs of parents and family carers. Developing effective mechanisms for seeking their views is central to this process.
[x head] Introduction
Changes in service delivery for people with learning disabilities impact on the way in which they are planned, developed and implemented. Examples of such changes include person-centred planning and direct payments. Parents and family carers of people with learning disabilities are a key group whose views are important regarding changes. Indeed, the Learning Disability Implementation Advisory Group (2006) stressed the importance of involving parents and carers in strategic planning to ensure that the end results reflect their needs and priorities.
According to McCombie and Chilvers (2005), one of the research priorities should be to put families’ views on services into practice.
In 2005, a parent forum alliance in one unitary authority in South Wales commissioned the Unit for Development in Intellectual Disabilities at the University of Glamorgan’s School of Care Sciences to undertake this study.
[x head] Aim
The aims of this study were:
• To gather information that could be used to inform service planning and development;
• To address the question: ‘What are the views of parents and other family carers in the unitary authority regarding current and future service developments?’
[x head] Literature review
A longitudinal study by Carr (2005) on children with Down’s syndrome revealed that parents showed overall satisfaction with health services. The study found complaints were expressed only when a worthwhile service was discontinued. Respite care services were positively rated by parents.
Walden et al (2000) found that satisfaction with informal and formal support from services correlates with parents’ quality of life. Parents perceive formal support from services as positive because it gives them a break from continuous care.
The Valuing People white paper published in England (Department of Health, 2001) was particularly critical of service provision for families of children with learning disabilities. Literature suggests that children and young people may end up attending a 52-week residential school, mainly because of a combination of social and educational difficulties. Families with a child with severe behavioural problems often find it difficult to cope with their child’s behaviour. Their difficulties are compounded by the absence of adequate support from respite care and local services. Lack of support leads parents to seek residential placements. After placement, parents report satisfaction with service provision. However, satisfaction must be viewed with some scepticism, because it might just reflect improvement in the family context and not satisfaction with their child’s experiences in the residential environment (McGill et al, 2006).
Another question raised by parents relates to transition from childhood to adulthood. Heslop et al (2002) highlighted families’ concerns and the emotional impact of the transition on them. Todd and Jones (2005) found families were uncertain and stressed because of a lack of efficient planning. They often considered that the topics important to them during transition planning were not actually reflected in the planning itself.
Todd and Jones (2005) researched the impact of transition on mothers and families in general. They found that mothers not only have to cope with the question ‘What will my child do after the age of 19?’ but they also consider the question ‘What am I going to do at this time?’
Knox et al (2000) viewed the ‘client’ as the whole family, not just the person with a learning disability. In this study, parents were alarmed about the absence of services for adult users.
It has been suggested that parents worry so much about what will happen to their children after they die that they pray their son or daughter dies first so they will not be left to fend for themselves (Bogues, 2004). Older carers have anxieties about the future. They feel uncertain about who will support their relative after they die. Others express concerns about self-neglect, harassment, abuse and stigma (East Sussex County Healthcare PPI Forum, 2005).
For older carers, it is frightening to discuss their hopes and fears for the future. Apart from the effort needed to take care of their relative, older carers have to cope with their own health problems (Williams and Magrill, 2006). However, they do not like defining themselves as carers and do not recognise the physical and emotional impact that caring can have on their emotional and physical well-being (Locke, 2004). In McConkey et al’s (2004) study about family placement schemes, general satisfaction was expressed by family carers.
There is a long tradition of caregivers being included in research. However, some key aspects of the caregiving experience have been neglected. Families should thus be included in research, not only so their experiences can be better understood, but also so their role in service planning - an area neglected until now - can be examined. It is suggested that the interests of families and people with learning disabilities should be seen not as conflicting but as contributing towards the well-being of the whole family (Ramcharan and Grant, 2001).
[x head] Method
[sub head] Study design
A qualitative approach was used, to allow views to be explored in greater depth and for issues of concern to be raised.
[sub head] Data collection
The data was gathered mainly via focus group interviews conducted by two university-based researchers. Provision was also made for individual interviews if necessary.
The topic guide for the focus groups and interviews was developed through discussion with members of the community services division and the parent forum alliance. We also took account of issues in the literature. The guide was then refined following a pilot focus group, held to test both its comprehensiveness and its acceptability to participants.
[sub head] Sample
Four focus groups were held with 13, seven, three and six participants respectively. In addition, three interviews took place with four participants (one interview was undertaken with both parents). The sample included both parents and family carers of those who were in the transition period, as well as those who were older. It also included those caring for people with varying degrees of learning disability. It is important to note that level of disability refers to the self-reported level as perceived by parents and carers. It was not verified through formal diagnosis. Seven participants were male and 26 female.
[sub head] Data analysis
All focus groups and interviews were tape-recorded, transcribed and imported for coding and analysis into NVivo (a computer software package for qualitative data analysis). Emerging themes were then identified and transcripts were coded according to the identified categories and themes. Inter-rater reliability was achieved by comparing the analysis undertaken by the two data collectors and agreement reached.
[x head] Results
Around 20 themes emerged from the categories. This article discusses five topics.
[sub head] Lack of information and the need to be proactive
Lack of information is related to the knowledge of and satisfaction with services (such as respite care and direct payments), professional support, planned developments and availability of resources.
Some of the themes related to specific forms of service provision while others related to views about accessing services and equity of provision. The amount of knowledge that participants had regarding services varied a great deal. Some had little knowledge of any services other than those they used, while others had heard of terms such as direct payments, but did not have information about what the terms meant.
On direct payments, some participants felt the information provided was insufficient. Others indicated they knew nothing about them. This low level of awareness has been noted elsewhere (Bogues, 2004).
Professionals were identified as the main source of information about services, and having the support of a good professional greatly enhanced access to services. However, participants relayed stories of parents and relatives they knew who had no access to professional support, or stories indicating that the professional was ineffectual in meeting needs. Some differences in access to support related to age.
There were limited responses to questions about participants’ awareness of planned developments. It could be argued that this is to be expected - if parents and relatives have limited awareness of services, having knowledge of their development is far less likely.
There was a view that information about proposed developments could be difficult to access:
‘I don’t know if there is anything, is there? The only thing I know of is the day centre and support accommodation. I don’t know anything else apart from the service [name] which we are using’ (interview 1).
In general, the information received by parents was seen as variable.
The need for better information is a recurring theme in the literature. Bogues (2004) found that ‘without exception’ parents and family carers raised concerns about the difficulties they had in accessing information. Similar views were discovered by Redmond and Richardson (2003) and Swain and Walker (2003).
Lack of information was closely related to the need to be proactive. Participants in three focus groups and two interviews stressed the need to be proactive in relation to securing appropriate services for their relative. In one instance, the lack of information provided was commented on:
‘Nobody ever gives you something that says “this is what you need to know” [others agree] - you’ve always got to search, there is always that frustration and you just get worn down by it all. My daughter is only 20, I can’t imagine what it’s like if you’ve got somebody about 40 - you must be just totally worn out with it all’ (focus group 2).
Similar difficulties with accessing information have been noted by Knox et al (2000). The need for parents and carers to receive full information was stressed by the Learning Disability Implementation Advisory Group (2006).
[sub head] Having to fight for service provision
The theme that seems to recur most often in the literature on parents’ and carers’ experiences is the view that parents have to fight for service provision (Redmond and Richardson, 2003; Swain and Walker, 2003; Williams and Robinson, 2000).
Participants in this study expressed similar views, with two focus groups explaining that it was necessary for parents and family carers to ‘fight’. Concern was also expressed that some parents, such as elderly ones, may not be able to fight like this so may not receive the services they need.
Some participants expressed their discomfort at having to fight even for their involvement in their children’s care, and for particular services such as respite care and direct payments. In one instance, a parent described how they had had to struggle for recognition of the role they felt they should play in their child’s care:
‘I think they are appalling, I have to fight. I had a major meeting after the last incident and I had to fight and say “Look, I am his mother”, my husband said “I am his father”’ (focus group 2).
Participants in three focus groups expressed the view that those who received services were often those who shouted the loudest.
Similar sentiments have been expressed elsewhere (Bogues, 2004). Such a situation was seen as unfair and leading to inequitable provision of services:
‘…You can see that there are some people that get everything and there are some people who get next to nothing and that’s the thing that really worries me about the whole system’ (focus group 4).
Redmond and Richardson (2003) noted a similar lack of uniformity in service provision and quality, as did McConkey (2005), although this latter study attributed variations more to the different characteristics of the people with learning disabilities rather than to their carers’ characteristics.
[sub head] Hopes and fears
Discussion about hopes was limited with comments made in only two focus groups and one interview.
In many instances, carers expressed fears that their hopes would not be realised. One participant in focus group 4 spoke of his ‘dark hopes’, indicating concerns for the future. There were more positive comments, such as the desire for services and support to be built around individuals’ expressed wishes and needs.
A feeling was expressed that the caring role would last a lifetime. Participants expressed fears about what might happen when parents die and the implications for other family members. In addition, there were concerns regarding the potential for abuse of their relatives. Such views are of concern given that there are currently 1,700 people with learning disabilities in Wales living with carers aged over 70 (Learning Disability Implementation Advisory Group, 2006).
Parents’ concern that their sons and daughters may experience abuse has been noted elsewhere (East Sussex County Health Care PPI Forum, 2005), as have wider concerns about what will happen when they die (Bogues, 2004). The fact that the need for support would extend beyond their lifetime and the potential implications for siblings of the person with a learning disability is a worry for older parents (Jokinen and Brown, 2005).
In one instance, a participant (the parent of someone with severe learning disabilities) was so concerned about the future that they indicated they would have sought a termination of pregnancy if they had known of their child’s support needs:
‘And if anyone honestly answered it they would say the same thing because you don’t know what is going to happen to your child after your days and that is what is worrying’ (focus group 1).
[sub head] Involving parents and carers
Discussions in the focus groups revealed that communication was a major issue. One aspect of communication is that which takes place between social services and parents, and another aspect is communication between parent forums and parents.
Comments regarding communication with the parent forum alliance were made in three focus groups and one interview. Mixed views were expressed about the role of parent forums. Most participants were aware that there was a forum representing parents and carers, but not all participants received communications about its work. Several participants also indicated that there used to be correspondence but it had stopped. Doubts were expressed about how much impact the parents’ forum could have in effecting change. One participant commented:
‘There have been meetings, not many people would turn up, you would write down transport, education, lack of speech therapists, lack of physiotherapists on the list and it would be the same the next [time] you went, nothing really happens’ (focus group 1).
There were comments about communication with social services in three focus groups and one interview. There was a feeling that this should be improved, along with some suggestions on how this could be achieved. There were some strong statements that suggested that social services were a barrier to people with learning disabilities receiving services. Participants reported that their and their children’s needs were not listened to or addressed. However, there was acknowledgement that social services were seeking to consult with parents and carers.
It was also noted that involvement in consultation processes had time implications for parents and, given that they already had enormous time pressures, they needed to be reassured that time invested in such activities would be worthwhile. One participant felt that social services had reservations about consulting with parents.
Participants also suggested that some attempts to involve parents and carers amounted to tokenism.
One suggestion for improving communication was the development of a newsletter which could be sent to everyone on the local learning disability register and which could include a letters page to encourage communication. However, it was felt that it would still not help parents and family members who did not currently access services.
[sub head] Health services
There was a mixed response about both the knowledge and experience of health services received by participants and family members. Mixed views are also evident in the wider literature, with some parents indicating an overall level of satisfaction with services (Carr, 2005), while others have reported less favourable experiences (Bogues, 2004).
Some of the positive statements included the following from the parent of an adult with mild learning disabilities:
‘Generally speaking I don’t think we’ve got a great deal of complaint, because when we’ve needed them, they’ve reacted and been as well as we would wish them to…. They were brilliant, no complaint at all’ (interview 2).
However, most comments were less positive. There was a feeling that children received a comprehensive health service but that this stopped at transition. A similar reduction in specialist health services was noted by Band (1998). Following transition, there was a perceived greater reliance on GP services and these were patchy in terms of quality of services received.
Lack of awareness by healthcare staff was also commented on by participants in other focus groups and is reflected in the wider literature (Learning Disability Implementation Advisory Group, 2006; Band, 1998). The need for disability awareness training for all healthcare staff has been stressed by Bogues (2004).
[x head] Discussion
In drawing conclusions from this study, it must be noted that there were mixed comments on how parents and family carers felt about service provision. In general, comments depended on the level of the learning disability, the age of the person concerned and that of their carers. Parents and carers of family members who were younger and had fewer disabilities tended to have better experiences of service provision and appeared less stressed and less dissatisfied. Where negative comments were made about specific aspects, these often reflected the wider research.
Both researchers who facilitated the focus groups made sure that all participants were aware of the range of services for people with learning disabilities. It was borne in mind that a certain service might not be considered as a ‘service’ or that its existence might be ignored by some participants. The researchers suggested a range of services for discussion, such as education, day services, work, leisure, transport, direct payments, person-centred planning and health services. However, the discussions were mainly concerned with social services.
The two-way nature of communication and the impact of its failure were evident. Parents and carers frequently complained about the lack of accessible, timely and appropriate information, commenting instead that they often had to be proactive in seeking it out. The second aspect of communication is the extent to which views of parents and carers are sought, listened to and acted on. Some positive comments were received in this respect but generally participants felt channels of communication were not working as effectively as they should to involve them in strategic planning.
Some parents expressed concerns about having to fight for service provision. Their fears focused on what would happen when they were no longer able to support their relative. Such fears are obviously a source of much concern and stress, and need, therefore, to be explored in more depth. Very few hopes, if any, were expressed for the future.
Finally, even though some positive opinions were expressed about health services, most participants were less positive, suggesting they often had to deal with unprofessional behaviours and inappropriate care.
[x head] Recommendations
• Wider mechanisms for providing information to parents and carers should be reviewed. This should include how to provide timely, accessible and accurate information in a proactive manner and in a variety of formats targeted to the appropriate stage of the family life cycle.
• Ways of involving parents and family carers in strategic planning should be reviewed. There needs to be a variety of routes to allow for the different demands placed on parents and family carers and the time they have available. Most importantly, it should also include mechanisms so they can receive feedback about the outcomes of consultation.
• Disability awareness training should be promoted for healthcare staff.
[sub head] Limitations
The study’s limitations must be kept in mind when drawing conclusions and making recommendations.
This research was undertaken in one unitary authority area with a relatively small number of participants. However, it should also be remembered that the aim was to provide information to assist planning in this region. In addition, a conscious decision was made to explore issues in depth with a smaller number of participants rather than carry out a wider survey. Furthermore, the study sample was inclusive, as it involved mothers, fathers and other family members supporting people with varying degrees of learning disabilities and of different ages. This provided results that are relevant to a broader range of parents and carers.
[x head] Conclusion
While some progress is evident, further development is needed for services to meet the needs of parents and family carers of people with learning disabilities. Developing effective mechanisms for seeking their views must be central to this process.
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