Validación de los modelos numéricos.

From a review of the literature regarding the impact of a learning disabled brother or sister on adult lives, there is significant variation; there are reports of both positive and negative influences and inconclusive findings regarding the impact upon health and life choices such as career, partner choice, the decision to have children, political, economic and religious beliefs. It is recognised however that many adult sibling studies in the field of learning disability originate from the USA and involve participants who are predominantly well-educated females from a white ethnic background and therefore male participants and those from non-white ethnic backgrounds are under-represented. The effect of a learning disabled sibling upon an adult’s life is of considerable importance as their experience over the life course may influence not only their current roles and relationships but also their future wishes and expectations about their support role; this forms part of the research question posed in this thesis.

Sibling roles, tasks and relationships change over the life course as siblings develop their own lives and move away from the family home. The literature suggests that

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most childhood relationships where disability is present are positive; however conflict is present in some relationships and where it exists, this is often due to increased care roles and reduced parental time and attention. Childhood roles are seen to become asymmetrical in the presence of disability, as the typically developing child overtakes the disabled child in physical or cognitive skills. There is some evidence that children think about the future care needs of the disabled child whilst still in childhood, but in adulthood, brothers and sisters commonly take on roles of advocate, financial advisor, co-ordinator of support, and provider of emotional and social sustenance. The presence of a disabled sibling is often seen to influence the roles and relationships of a typically developing adult, and a role commonly seen in families where there is more than one typically developing child is that of ‘most involved’ sibling. Factors that affect sibling roles and relationships with the disabled person are many and varied including gender, birth order and spacing, family size, personality type, parental and family context; the life stage and unique circumstances of the individuals involved are also critical.

When disability is present in a family, be this physical, mental health or learning disability related, most adult siblings worry about the future, particularly the time when parents are no longer able to provide previous levels of support. Although a care role is often anticipated, adult brothers and sisters may not expect to provide the same levels of care that parents have previously provided. Common concerns of adult siblings include the effect of a care role upon their own lives and families, not having enough information and knowledge to deal with matters arising and in particular, financial and legal issues. Proximity and health issues for both siblings and the disabled person are also a worry. With specific reference to the field of learning disability, there appears to be a dearth of clear futures plans in place; where plans do exist, key person and financial plans are the most common types, followed by residential plans. Issues said to influence the futures planning process are the availability of information and advice; relationships between service

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providers and families, inter-family conflict; the understanding, experience and wishes of learning disabled people themselves; finance; available resources; personal coping styles; gender; parental expectation and type of disability. It is acknowledged at both national and international levels that futures’ planning in the presence of learning disability is a difficult and sensitive area. These challenges support the aim of this thesis, which is to explore sibling wishes and preference regarding a future care role for a learning disabled brother or sister, as it is siblings who are most likely to take on some degree of future responsibility, due in part to family roles and expectation, but also in light of the current government agenda of rationalisation of services.

Existing empirical data suggests that some siblings need support with difficulties that can arise due to the presence of a disabled sibling. Early intervention programmes and proactive futures planning that support the needs of individual families and their members, along with counselling services for parents and siblings (either individually, or as a group), are advised. Siblings have also voiced a wish to access to peer support groups and the need for information on services, financial issues, leisure and residential opportunities has also been highlighted.

It is therefore clear from the review of the literature that little attention has been given to the views of siblings of people with learning disabilities in terms of the future of their relatives. Only by exploring sibling needs and wishes, and then listening and responding to the ‘expert voice’ of the individual who experiences this phenomenon at first hand, can more appropriate services be provided. A focus upon hearing the voice of the individual is aligned with the methodological approach of Interpretative Phenomenological Analysis (IPA), chosen as the framework for Stage two of this thesis, and which is set out in Chapter three. Furthermore, this methodological approach is congruent with the research aim of exploring the perceptions of siblings of adults who have a learning disability in

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relation to personal wishes, family expectation, and any discrepancy between the two in relation to their role in the future support of their sibling.

69 Chapter Three: Research Methodology

Within the literature review, the need to listen to the voice of adult siblings of people who have a learning disability was justified by the lack of empirical study in this area; a deeper understanding is deemed necessary so that services can provide appropriate and sufficient support. The aim of this thesis is as follows and forms the starting point of the research process:

 To explore the perceptions of siblings of adults who have a learning disability in relation to personal wishes, family expectation, and any discrepancy between the two in relation to their role in the future support of their sibling.

The objectives aligned to the stated aim are:

 To explore the personal wishes or preferences of siblings of learning disabled people in relation to their role in the future support of the learning disabled person.

 To compare personal wishes or preferences with the reality of what has actually happened or they expect to happen in terms of support to the learning disabled person in the future.

 To identify how the expectations and wishes of non-disabled siblings compare with the expectations and wishes of older parents.

Having established a clear gap in the literature in Chapter two, this methodology chapter will outline and justify the philosophical stance and methodological approach of the thesis, along with the epistemological basis which led to the adoption of a constructivist approach. Following this, the use of a mixed methodology (utilizing a survey at Stage one and semi-structured interviews within an Interpretative Phenomenological Analysis (IPA) framework for Stage two) will be discussed, along with a rationale for the choice of approach, a critique of IPA and

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ethical issues encountered. The process of data collection and analysis for stages one and two will then be set out, after which issues related to reflexivity, reliability and validity will be presented. As the research question deals with sensitive and potentially emotive issues, it was important to choose a methodology which would be flexible. The use of a research methodology that was not overly preoccupied with the choice and defense of a particular method, yet facilitated adult siblings of learning disabled people to express their individual perceptions and wishes on this deeply personal subject, was deemed appropriate.