Research Plan. Can future planning be improved for older caregivers of adults with learning disabilities?

by skidadle (student)

How can future planning be improved for adults with learning disabilities living with older carers?

The purpose of this research proposal is to critically examine how adults with learning disabilities and their ageing carers view planning for the future; whether they have made plans, their feelings on services available and their experiences of services received, along with their concerns and suggestions for improvement. The Government estimates that 29,000 adults with learning disabilities live in the family home supported by parents over 70 years of age; yet only half of local authorities are aware of how many people are living in these circumstances within their areas. (Mencap, 2002).

Due to developments in health and social care many adults with learning disabilities have improved life expectancy and are increasingly outliving their parents, contrary to in the past when most parents of the learning disabled would care for their child until they died, usually by the time they reached their 30’s (Mencap, 2002). Mencap state that “Governments and local authorities have failed to adjust to this change and have, as a result, neglected the needs of older parents and their ageing sons and daughters” (2002, p. 5)

This is an area where research must be deductive; it must inform policy and practice so as to improve the information available, as well as the services provided by social services and to ensure a smooth transition for the service user and their families.

Literature Review

In 2001, the government produced the Valuing People white paper (Department of Health, 2001), which highlighted the importance of older carers planning for the future so as to avoid crisis situations, usually caused by the death or ill health of the carer. Mencap point out that “Without proper planning, people are moved into inadequate or inappropriate placements determined by whatever resources are available at the time, rather than to more appropriate accommodation” (2002, p. 7). They go on to emphasize the stress and anxiety that such a situation can cause to the service user as they lose their parent and home at the same time.

Dillenburger and McKerr (2010) reported on a study of parents/ caregivers of adults with learning disabilities in Northern Ireland. They interviewed 29 carers aged between 59 and 80. Their findings showed an acute deficiency in support, future planning and respite care which was causing high levels of anxiety and stress for the carer. 72% of the participants had not made any long term plans for the future care of their learning disabled child; although the importance of such plans was clear to most participants and the majority agreed that these plans should be made as early as possible. Despite this, 66% had not discussed future provision with social service and interestingly none of the participants had talked about any plans for the future with their son or daughter.

Bowey and McGlaughlin (2007) undertook a study examining the views of carers aged over 70 supporting 62 adults with a learning disability, about planning for the future. 56 took part in interviews in their own homes with a further six completing a questionnaire. Their findings highlighted a need for services to take a proactive approach to information and support provision in order to facilitate families in making appropriate plans for the future. They found that 55% were not ready or unwilling to formulate any plans for the future, with only 26% having actually agreed a future plan. The remaining 19% were either thinking about or in the process of agreeing a plan. Of the 58% of participants that had discussed future plans with another person, only half had done so with a social worker. Bowey and McGlaughlin identified several barriers to future planning including a lack of confidence in available housing options, a lack of understanding about the timescales involved in arranging alternative housing, guilt or difficulty in letting go, the existence of mutually supportive relationships or simply they did not see a need to make plans as they were in good health and still had their spouse.

In an earlier study, Bowey and McGlaughlin (2005) explored the views, hopes and anxieties of learning disabled adults about living at home and planning for the future. 41 adults with mild to moderate learning disabilities completed a questionnaire during an interview away from the family home; this was done in order to alleviate any pressure or influence from family members. It was noted that the sample was partly limited by access and communication issues. 73% of participants showed an awareness that their carer would not always be with them and that they would need to consider alternative housing and support packages in the future. However, all of them demonstrated reluctance in discussing plans with their families. The importance of short breaks was highlighted by the study; those that had good experiences of short breaks away from the home found planning for the future a less difficult prospect. However, negative experiences in the past had left some disinclined to consider future alternatives and these participants would need extra support and reassurance throughout the process. For the participants that had agreed a future plan, they had started to view the changes positively and were looking forward to the move. This also gave them a greater sense of control over their future along with feelings of empowerment. Some participants showed a great concern for leaving their carer alone, with 83% stating that they helped out at home in some capacity. These mutually supportive relationships had a negative impact on the learning disabled adult’s readiness for making future plans out of fear that the carer would be unable to cope without them. One of the main emphases of the concluding discussion was that the service users and their carers tended to avoid talking about future plans in an attempt to avoid distress and upset. “However, this is unacceptable; the time will inevitably come when a crisis will require these needs to be addressed... people need opportunities to talk about their fears in order to prepare for the inevitable” (Bowey & McLaughlin, 2005, p. 1390). Practitioners need to facilitate these discussions in order to avoid crisis situations.

A study by McLaughlin et al (2004) examines learning disabled adults ability to verbalise their aspirations surrounding their housing needs and their capacity to comprehend the different options available to them. They found that the participants were left with feelings of powerlessness when decisions were made for them by carers and/or professionals, and felt they were unable to make their own choices. The researchers call for “the need for a cultural shift whereby the voices of adults with learning disabilities are heard and acted upon” (McLaughlin, Gorfin, & Saul, 2004, p. 709).

Walker and Walker (1998) produced ...

This is a preview of the whole essay

Walker and Walker (1998) produced ‘Uncertain Futures’, a report providing an overview of research, policy and practice on services for adults with learning difficulties living at home with older family carers. They identified various barriers in future planning, including lack of information, discontent with potential placements and the belief that their family member did not want to move. They also highlight the existence of co-dependent relationships as a crucial factor affecting planning, with the learning disabled adult fearful of leaving their carer as they feel they would not be able to cope, as well as the carer’s reluctance due to reliance on their relative for emotional and practical support. They also noted responses from service professionals, several of which reflected the views expressed by older family carers, including greater concentration on preventive services as opposed to crisis intervention; improved inter-agency working and better collation and dissemination of local information on services and how to access them.

A study by Prosser (1997) sought to uncover the attitudes of carers of older adults with learning disabilities, with regards to planning for the future. They interviewed the carers of 32 learning disabled adults over 40, with the average age of the primary carer being 67.2 years. Findings showed that 82% of carers had made no concrete plans for the future. While the majority of these carers acknowledged the need for such plans, a number had no intention of making any plans for future provision. Most carers made the assumption that social services would make provisions when they could no longer provide care and believed that they had little control over what would happen to their relative at this point. Prosser also highlights that the carers had a very limited knowledge of the different types of accommodation available.

The government have responded to these findings and have implemented various strategies in an attempt to avoid crisis situations. Alongside the Valuing People white paper (Department of Health, 2001), the report ‘Family Matters: Counting Families In’ (Department of Health, 2001) sought to uncover the perspectives of family carers within the development of a national strategy for people with learning disabilities. One of the Priorities highlighted in this report was “Local identification, support and planning with older carers (Defined in this report as being 70 years and older).” (2001, p. 31) In the 2009 ‘Valuing People Now: a new three-year strategy for people with learning disabilities ‘Making it happen for everyone’’ (Department of Health, 2009), the government acknowledged that there was still a long way to go in improving services and opportunities for adults with learning disabilities and restated their “commitment to leading change to transform people’s lives and opportunities” (2009, p. 2) They identified 15 key policy objectives for 2009-2012, these include: All people with learning disabilities and their families will “have greater choice and control over their lives and have support to develop person centred plans” (p. 132) ; have an informed choice about where, and with whom, they live.” (p. 133) ; and “have the opportunity to speak up and be heard about what they want from their lives – the big decisions and the everyday choices. If they need support to do this, they should be able to get it” (p. 134)

The main recommendations of all previous studies centre on avoiding crisis situations, improving the information available to service users and their carers, ensuring positive experiences of respite placements and taking into account mutually dependant relationships between service user and carer when putting together a care package. While the government has made attempts to improve future planning for older carers, it is clear that there are little differences in the findings of studies conducted a decade apart. It would be prudent at this stage to mention personalisation and individual budgets (Department of Health, 2009). While this strategy aims to provide options and greater control for the service user, it may have a negative impact with regards to respite placements, for example, if the cost of the residential placement takes up the majority of their budget, they may have to sacrifice their place at their day service. It is the opinion of the author that this would have a detrimental effect on service user and carer experience of short term placement and therefore on their willingness to engage in planning for the future. The majority of the studies are weighted by the views and opinions of carers, with little emphasis on the perspectives of the learning disabled adults whose lives are greater affected by the plans, or indeed lack of plans for their future care.

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Methodology

Approach

Both a qualitative and quantitative approach will be utilized in the research. Quantitative methods claim to be objective; researcher’s values and attitudes are removed from the study itself (Humphries, 2008). Quantitative research is often used to establish cause and effect relationships and produce testable hypothesis; predictions that one thing contributes to another, in this case, that a lack of future planning will likely lead to crisis intervention (Whittaker, 2009). Qualitative methods claim to be subjective; they are interested in the views of the research subject (Humphries, 2008). The concept of reflexivity argues that far from being objective, researchers will bring with them their own set of values, beliefs and attitudes to the studies they conduct (Whittaker, 2009). In order for the author to be reflexive, they must be self-aware with regards to this and understand that it is their own values and life experience that frame this research proposal.

Epistemology is the study of knowledge; what knowledge is and how people know what they know (Thomas, 2009). Quantitative data is influenced by positivism (Whittaker, 2009), the belief that reality consists of only what can be seen, heard, touched, tasted or smelled. The researcher is seen as an objective observer, and research itself should strive to produce measurable, quantitative data free from outside influences (Humphries, 2008). Interpretivism is the main influence over qualitative methods, a belief that a single reality to be known does not exist; knowledge is open to interpretation by different individuals. People bring meanings to situations and it can never be value free (Humphries, 2008). Researchers holding a feminist epistemological stance hold a value set that gives preference to patriarchal models of research which place importance on the researcher distancing themselves from the subjects and striving to be objective (Whittaker, 2009).

The author notes therefore that they are taking a mixed-methods epistemological stance. The collection of quantitative at the beginning of the study followed up by more in depth interviews and focus groups suggests that “the researcher bases the inquiry on the assumption that collecting diverse types of data best provides an understanding of a research problem” (Creswell, 2003). However, Humphries articulates that when a mixed-method approach is used, it is often apparent in the write up that the researcher holds one method in higher regard (Humphries, 2008).

Access

The first stage of the research will be to identify parents/carers of learning disabled adults aged over 65 in the local area. This will be done in partnership with Local Authority; discussions with practitioners on learning disability and mental health teams and staff at day services that are attended by adults with learning disabilities. These discussions will ascertain who may be living in this situation locally. A questionnaire will be developed and distributed to the older carers of adults with learning disabilities; carers aged over 65 have been selected for this study as this is the age at which most people retire. The questionnaires will be accompanied by an information sheet detailing the study and the intended interview and focus group sessions. There will also be an accessible information document produced for the service user. Also enclosed will be two forms to be completed by those who wish to be involved further, one for the parent/carer and one for their relative, along with an envelope to return them to the researcher confidentially. The researcher would need to be explicit about their role in the research and offer reassurance surrounding confidentiality and anonymity along with a strong emphasis on the fact that nothing they divulge in the study will have an effect on their current situation (Bowey & McLaughlin, 2005). Barriers to communication must be taken into consideration. Whitehurst (2007) proposes that when communication proves particularly challenging, problems can be resolved through the use of support staff who are experienced in the service user’s unique communication pattern. She found that the participants obviously felt comfortable with the familiarity of person talking to them.

Interviews will be conducted within the carers own home at their convenience without the presence of their relative so as not add additional pressure and ensure freedom in their responses. The focus groups will be carried out within the service user’s day service. This will ensure the availability of their support workers as well as accessibility for the service users. A familiar environment may also aid the participants to feel at ease and therefore more likely to contribute (Whitehurst, 2007). While most focus groups last around two hours (Whittaker, 2009), for the purpose of this study they will be reduced to an hour, plus an additional 15 minutes before and after the main discussion for welcoming and concluding the meetings.

Sampling

Purposive sampling will be used to conduct this study; participants are chosen based upon their experience, knowledge or role because they are more likely to generate valuable information (Whittaker, 2009). However, purposive samples do not allow researchers to make generalisations to the wider population (Orme & Shemmings, 2010).

The researcher will identify those who had volunteered for further involvement following the completion of the questionnaires, both carers and service users. Carers will be selected on their age; only those over 65 will be interviewed. Service users will be contacted to determine their suitability to take part in the focus groups; they will need to have certain level of communication and understanding. At this stage, the support workers at the day services would be approached in order to recruit the most appropriate people to take part in the focus groups; those who are well known to the service users taking part and possess an aptitude in understanding the communication patterns of those involved.

Ethical Considerations

All research must comply with the individual University’s system of ethics (Whittaker, 2009), along with the social work code of ethics as outlined by BASW. In recent years the government has produced the ‘Research Governance Framework for Health and Social Care’ (Department of Health, 2005). All these guidelines agree that the participants must be protected from harm, that researchers must obtain informed consent and that participants have the right to anonymity.

Research with people with learning disabilities can raise ethical issues around informed consent (Bond & Hurst, 2010) . McLaughlin et al (2004), states that all adults with learning disabilities can make their own decisions on some level. Where any issues are raised, the author proposes to enlist an independent advocate in order to ascertain that the service user truly understands and consents to their participation in the study.

Research Methods

The research will encompass questionnaires, semi-structured interviews and focus groups. The questionnaires will be distributed to older parents/carers of adults with learning disabilities in order to gather qualitative data relating to future planning. The questionnaires will also identify participants for the interviews and focus groups. Questionnaires allow the researcher to collect uncomplicated information from a large sample (Whittaker, 2009), which is relatively easy to analyse and compare (Thompson & Thompson, 2008). Their value lies in their ability to provide an indication of a situation; however they are very limited in the sense that they do not enable the participant to elaborate on their answers (Thompson & Thompson, 2008).

A sample of the parents/carers will then be interviewed in order to gain more in depth opinions on plans for the future of their relative and their experiences of services they have already received. They will also be given the opportunity to put forward suggestions on how these services could be improved. Interviews hold an advantage over questionnaires as they allow participants to discuss issues in a more open way, unconstrained by space or one word answers that a questionnaire might demand (Whittaker, 2009). In comparison with questionnaires “breadth is traded for the depth of knowledge and insight that can come from interview work” (Thompson & Thompson, 2008, p. 288). When conducting interviews, the researcher develops an interview schedule; a list of questions to be asked (Thompson & Thompson, 2008). In semi-structured interviews, an interview schedule is used; however there is some flexibility during the interview, for example, the order in which the questions are asked can be adjusted to suit the participant with regard to the flow of the conversation. This permits the researcher to analyse data easily due to the structure, whilst providing them with enough flexibility to investigate participant’s reactions in greater depth (Whittaker, 2009). Interviews allow the researcher to build up a rapport with the participant, relate to them and put them at ease if necessary or encourage them to elaborate or clarify what they are saying. The interviewer can also look for the more subtle indications, such as body language or facial expressions to facilitate them on the best direction to take (Thomas, 2009). Interviews, however, are time consuming and therefore rely on a much smaller sample than questionnaires.

Three focus groups will also be employed in order to ascertain the views and aspirations of adult service users with learning disabilities regarding their future care and housing needs. Each focus group will consist of the researcher, 4 -5 service users along with two support workers that are known to all service users in that particular group. Focus groups are defined as “a group of individuals selected to provide their opinions on a defined subject, facilitated by a moderator who aims to create an open and relaxed environment and promote interaction between participants” (Whittaker, 2009, p. 47). These interactions can help participants to challenge other people’s opinions whilst exploring and providing clarity of their own views. Focus groups are less time consuming than interviews and are more accessible for people with literacy difficulties (Whittaker, 2009). However there are several disadvantages of using focus groups in research. Some participants may lead discussions and become more talkative in group situation whilst others behave in the opposite way; some may go along with the majority due to lack of confidence (Thomas, 2009). Practical issues such as finding a time and place that will suit all participants can be problematic and transcribing group discussions can be complex, for example, correctly identifying which participant has made a particular contribution, along with the timescale of doing this correctly (Whittaker, 2009). To avoid some of these pitfalls, the focus groups will consist of a small number of service users and the presence of their support staff will provide comfort and encouragement for the service users whilst assisting the facilitator in clarifying their points of view.

Data Analysis

The questionnaires will produce quantitative data, which will then be coded and entered into a database in order to produce frequency tables and percentages, which can make data easier to comprehend (Whittaker, 2009).

All interviews and focus groups will be recorded and transcribed in order to analyse the data. The researcher will be using the thematic analysis model; a comprehensive and systematic way of analysing data. Braun and Clarke state that “thematic analysis provides a flexible and useful research tool, which can potentially provide a rich and detailed, yet complex, account of data” (2006, p. 78). They have produced a six stage model; a set of guidelines to enable an effective analysis process. They have however acknowledged some disadvantages; it can be hard for a researcher to decide which particular aspect of the data to focus on when faced with such a broad range of analytical options which this flexible method can afford. They also highlight it’s “limited interpretative power beyond mere description if it is not used within an existing theoretical framework” (Braun & Clarke, 2006, p. 97).

Reliability and Validity

When talking about quantitative research, validity refers to whether the researcher is measuring what they want to be measuring. Reliability has to do with consistency, i.e. if the same study was carried out by a different person, it would get the same results (Whittaker, 2009).

With regards to quantitative research, validity is measured through the researcher’s methods of data collection and analysis. One of the ways in which a researcher can ensure that their findings are valid, is to re-visit the participants and check whether they agree with the findings; that the findings reflect their views correctly (Alston & Bowles, 2003). The author intends to produce a summary of the finding, in an accessible format with regards to the service users, and distribute them accordingly. They will also be made aware that they can contact the researcher if they feel they have been incorrectly represented. Reliability can be tested by altering the wording of questions slightly with different interviewees (Alston & Bowles, 2003), although the author believes that this will be achieved naturally through the conversational techniques applied in the interviews. This can be established when reviewing the transcripts of the interviews.

Dissemination

It is the hope of the author that this study will inform policy and improve services with regard to future planning for people with learning disabilities. It is their intention that the findings would be published in a social work journal and the author would also present the findings to specialised learning disability groups, social work students and practitioners via conferences and universities as well as being used in specialised training courses.

Timescale

The researcher envisages that the study will span one year in order for the participants to be recruited and for the interviews and focus groups to be completed, transcribed and analysed along with allowing sufficient time for the study to be written up in full.

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