Siblings have needs

This theme stemmed from five comments in total and was therefore the least commonly occurring theme. From analysis of the questionnaire, it is clear that participants felt the need to communicate their point of view, to be informed of available options and involved in futures planning. Participants commented that better quality accommodation with a wider range of options needs to be available and that there is little support for siblings in their situation. These findings again confirm the results of previous research, such as that by Benderix and Sivberg (2007) who claimed that consideration of sibling needs, wishes and ability to take on a supportive role should be addressed as they move through the different life stages. Early intervention programmes and proactive futures planning that meets

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the needs of individual families and their members is called for by siblings along with counselling services, peer support groups, information on services, financial issues, leisure and residential opportunities. Support of this nature is needed to effectively support sibling involvement in the lives of their disabled brother or sister (Heller and Kramer 2009).

Conclusion to the results of Stage one

Although it is recognised that Stage one constitutes a small scale study, the findings demonstrate that all respondents had contact with the learning disabled sibling at least once in a six month period. Just over half claimed that there has been full discussion with parents regarding their future care role, yet the same number reported there to be no clear formalised futures plan in place. Where a futures plan was in place, only a third of siblings claimed that the plan was fully agreeable to both them and their parents. There appears to be a lack of clarity therefore between siblings and parents regarding futures plans for people who have a learning disability. It was claimed in just over half the cases that there was no difference between siblings’ personal wishes and parental wishes for a future support role; however, three quarters of the participants noted concern about the impact a learning disabled sibling may have on their future lives, which suggests that this is an area of anxiety and concern.

Analysis of the written comments from Stage one presents evidence of a range of sibling experience. Satisfaction with services is a contentious issue within learning disability services and the majority of participants in this study reported dissatisfaction, stating that services were not of an appropriate standard, and lacked understanding of the needs of families in the presence of learning disability. Some siblings, however, did note satisfaction with residential care services but claimed that it can take a long time for families to find an appropriate setting. Parental influence on the futures planning process again evoked a mixed response: some siblings noted frank and open family discussion, whilst others claimed that

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parents were unable to discuss the future and this was a cause of frustration and distress for some participants. A third of the respondents raised concern about the future, futures planning and the impact the learning disabled person may have upon their lives. Worries raised were those of parents no longer being able to provide existing levels of care and how siblings would manage the support needs of the disabled person alongside responsibilities to their own families.

Sibling engagement in futures planning was generally confined to financial management. Participants whose comments informed this theme expected to take on extra care responsibilities in the future and assume the role of ‘overseer’ in parental absence. The last theme to emerge from the written comments was that siblings of learning disabled people want their voices to be heard and need access to support. Siblings wanted support so that they were able to assist the disabled person with futures planning and to access a better quality and range of services. The findings of Stage one demonstrated that most respondents were concerned about the impact a learning disabled sibling may have upon their lives in the future; due to the variability in the number of futures plans reported, lack of empirical study in this field and sensitivity of the research topic, it was felt that further qualitative research into this area was justified. It therefore gave credence for progression onto Stage two, in which face to face semi-structured interviews were carried out to gain a deeper exploration of the area; the results of this are outlined in the next chapter.

111 Chapter Five: Results of Stage two

Chapter five will present the findings from Stage two of the research process, the in- depth semi-structured interviews which took place after completion of Stage one. The discussion of these results will take place in Chapter six. For Stage two, ethical approval was gained (see methodology section) to carry out face to face semi- structured interviews with up to 15 adult siblings aged 25 or over, of people who have a learning disability. Face to face semi-structured interviews are supported from a theoretical perspective of phenomenology, which can be linked to a constructivist paradigm, within which, people are seen as individuals reacting to and interpreting their world in a unique way (Kelly and Long 2000). Semi-structured interviews are also the data collection tool most favoured within IPA (Smith et al 2009). The research questions were based on the literature review, the aim and objectives of the thesis and the results from Stage one, to support alignment throughout the research nexus and to build upon the results of Stage one, as advised by Robson (2002).

The purpose of the interview and process to be followed was reiterated to each participant before starting the interview, as outlined in Chapter 3; particular attention was paid to informed consent, anonymity, beneficence and non- malfeasance (Mappes and Degrazia 2006). All participants were reminded that there was no obligation to take part in the study, that they had the right to withdraw at any point and that to do so would not lead to a negative impact upon services received by themselves or their family members. Participants were further advised that the interview was likely to last for approximately one to one and a half hours, and to further support ethical research practice (Polit et al 2001) written consent (Appendix F) was gained from each participant.

All interviews were recorded using a digital and non-digital recorder as a backup, following the process outlined and justified in the methodology section of Chapter three. The interview questions (Appendix E) were followed as a general guide,

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although points of interest were followed up by the researcher. Written notes were made on the interview schedule and key points were read back to the participant at the end of the interview; this was to ensure that the interviewer had understood the essence of the respondent’s experience, to demonstrate engagement on both sides, and as a means of triangulation as suggested by Teddlie and Tashakkori (2009). In order to conduct research in a professional and ethical manner (Beachamp and Childress 2009), all participants were thanked for their time at the end of the study and were asked if they had any questions. Each participant was offered a contact sheet for the Sibs organisation in case they felt distressed or wanted further support after the interview. As researcher, I also used my professional skills and experience as a registered health professional to make a judgement on the emotional well-being of each participant at the end of the interview. As soon as practical after each interview, field notes were made in a reflective diary on my key thoughts, queries and response to the interview as a form of reflexivity.

In total, 15 interviews were undertaken and pen portraits using pseudonyms are presented below.

5.1 Pen portraits of the participants