Consideraciones finales

Andrea is 54 years old and works full time in a profession related to health and social care. She is married but has no children from choice. She is the second youngest of six children; her mother died several years ago but her father is still alive and lives with her youngest sister in the family home. She is a full sister to participant 15. Her brother Elliot contracted meningitis and measles at the age of three which was the cause of his learning disability. Elliot died at the age of 53; he lived in the family home with his father and Participant 15, (Carol) until his death.

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Claire is 50 years old and works full time in a profession related to health and social care. She is married for the second time and her husband also works in the field of health and social care. Claire has two children and step children. She is the youngest of six siblings and both her parents are now dead. Her brother Simon is 51 years old and lives nearby in a supported house. He was born prematurely which was thought to cause the learning disability.

Participant 3

Helen is 30 years old and is a full time postgraduate student in a subject related to health and social care. She is single and lives alone in student accommodation a few hours away from the family home. She is the only typically developing child of the family, her brother Tony is 27 years old and has profound multiple physical and intellectual disabilities. He has shared care between his parents in the family home and a charitable organisation.

Participant 4

Rachel is 49 years old and works full time in a profession related to health and social care. She has one daughter and lives with her partner. She is the only typically developing child of the family. Her mother is still alive and lives with her second husband. Her sister Amy is 48 years old; she has Down syndrome and lives in supported accommodation in the community.

Participant 5

Gail is 56 years old and works part time in a profession related to health and social care. She lives with her husband and has one adult child. She was the youngest of three children in the family and is a sister to respondent 11, Rita. Both her parents are now dead and her learning disabled sister, Verity, died a couple of months

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before the interview took place. Verity was 67 years old when she died and her learning disability was attributed to birth trauma. Verity lived in various residential settings from adolescence onwards.

Participant 6

Fran is 43 years old and work full time in a job that has no connection to health and social care. She lives with her partner and has two adult children. She is the eldest child of the family; Pete, her brother, is 41 years old and has Down syndrome. There is a younger half-sister named Gill. Pete lives with their mother who is a widow.

Participant 7

Janet is 38 years old and works full time; her work sometimes brings her into contact with people who have a disability. She lives with her husband but has chosen not to have children because of having a learning disabled brother, Greg. She and her twin are the second-youngest children in the family where there are two older half-siblings. Greg is 32 years old and has Down syndrome; he is the youngest in the family and lives with his mother. His father now lives in a nursing home.

Participant 8

Maali is an Asian woman who is aged 36. She is married and has two small children but is due to emigrate soon to live with her husband. Her professional background is unrelated to health and social care but her current work role has an association with care provision. She is the second youngest of four children in the family and her parents are both still alive. Safa, her learning disabled sister, is 41 years old and is the eldest child of the family. Her learning disability was attributed to complications in pregnancy. Safa lives with her husband in the community and has a young child who also has a learning disability.

115 Participant 9

Kath is a 64 year old retired woman with a long history of work in health and social care. She lives alone and is divorced with three adult children, grandchildren and a great grandchild. Both her parents are now dead. She is the eldest of seven children in the family. Her sister Laura is 46 and has Down syndrome. Laura moved into the community with support over the last year after living with Kath for a year following their mother’s death. Kath is a sister to participant 10, Kevin.

Participant 10

Kevin is a brother to Kath (Participant 9). He is aged 49 and works full time in employment that is unrelated to health and social care. He lives with his partner and has two adult step-children. His sister Laura is 46 and has Down syndrome. Laura has moved into the community with support within the last year after living with Kath for a year following their mother’s death.

Participant 11

Rita is an older sister to Participant five, Gail. Rita is 65 years old and is retired from employment that had no relation to health and social care. She lives with her husband and has two adult children. Both her parents are now dead and her learning disabled sister, Verity, died several months before the interview took place. Verity was 67 years old when she died and her learning disability was attributed to birth trauma. Verity lived in various residential settings from adolescence onwards.

Participant 12

Steven is 34 years old and works in a job that has some connection to health and social care. He lives with his partner a few hours away from the family home and has no children at present. He is the eldest of two children; his sister Fiona is 31

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years old and has a learning disability that may be associated with a virus in pregnancy. Both parents are alive and Fiona lives in the community with 24 hour support.

Participant 13

James is a single man of 68. He is retired from his own business enterprise which had no connection with health and social care. He is the second eldest of five children in the family. Both parents are now dead. His sister Jayne is 58 years old and lives with him, having done so since their parents died. Her learning disability is attributed to encephalitis in early childhood.

Participant 14

Val is aged 61 and is retired from employment which was not associated with health and social care. She has no children of her own but states this was not an active choice. She lives with her husband and brother Phil who is aged 56 and has Down syndrome. Phil has always lived with Val since their parents died.

Participant 15

Carol is 48 years old and is a sister to Participant one, Andrea. Carol has a professional background which is related to disability. She lives with her husband and they have no children but this was not an active choice. Her brother Elliot contracted meningitis and measles at the age of three which led to the learning disability. Elliot died at the age of 53; he lived in the family home with his father and Carol as main carer after their mother’s death.

5.2 Data analysis

There is no single, finite way to approach analysis from an IPA perspective. Smith and Osborne (2008) provided guidance but maintained that there is no fixed procedure. The general principles suggested by Smith and Osborne (2008) were

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followed, such as a sample size that enabled the perceptions and experience of a specific group to be presented; additionally, in keeping with the principles of IPA, all participants had experience of the same phenomena, which was that of having a learning disabled adult sibling. Because there were only 15 participants, wide generalisations cannot be claimed; however the detailed analysis of specific cases may or may not be relevant to wider yet similar populations. The transcription of whole interviews, including questions, is advocated and for analysis, margins are traditionally left on both sides for analytical comments, an example of which can be seen in Appendix I. A semantic level of transcription is often utilized within an IPA study with all words spoken, laughs, long pauses and other features of note written down (Smith et al 2009).

Analytical process followed at Stage two:

Each interview was transcribed verbatim and included colloquial language, ‘emm’s, ‘er’s and pauses. No note was made of tone or body language in general, but where a participant became tearful, visibly upset or laughed, this was noted at the appropriate place in the script within brackets. Dots `....` were used to denote pauses and sections of text that were removed because they were not essential to the key essence of the featured quote. Parts of the interview that were inaudible were denoted by empty brackets ( ).

The transcript of each interview was printed and read a number of times whilst listening to the audio tape; corrections were made until the transcript was as accurate as possible. Page and line numbers for each consecutive page were inserted and wide margins applied to both sides of the transcript. All transcripts were then read and re-read. Significant or interesting points were underlined in the text and handwritten notes made in the right hand margin.

The transcript and researcher notes in the right hand column were re-read; emergent themes were then handwritten in the left hand column, along with notes

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on how each theme may fit with another theme. From here, superordinate or key themes that drew together a number of related components were identified, for example, ‘Family’ or ‘Impact of learning disabled person upon the sibling’. Subordinate themes that formed a subsidiary component of the main or superordinate theme (such as ‘Parents’ under the superordinate theme of ‘Family) were noted. Some subordinate themes were further broken down to sub- categories such as ‘Mum’ or ‘Dad’.

From each interview, a list of superordinate themes, subordinate themes and sub- categories was then created. Supportive evidence in the form of participant quotes, with the corresponding page and line number were placed next to each superordinate or subordinate theme. The superordinate and subordinate themes were listed on the left side of the paper and the supportive participant quote, page and line number on the right hand side to create a theme and evidence chart, an example of which can be seen in Appendix H. At the end of each theme and evidence chart, a note of superordinate, subordinate and sub-categories for that particular interview was listed.

For each interview, the theme and evidence chart was re-read to check for congruence between theme and evidence, and to see if any amalgamation of themes could be made. Corresponding changes and corrections were made as required. The research supervisors and a research assistant further checked the theme and evidence chart for each interview to verify that there was sufficient evidence in the transcripts to support the themes and sub-themes, and that all categories listed at the end were correctly represented.

The frequency of superordinate themes was analysed across all interviews (Appendix J) and those superordinate themes that were present in a minimum of 11 interviews out of 15 are referred to in this chapter.

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Key quantitative data from the interviews was analysed on an individual interview basis, namely respondent relationship to any other participant; age; gender; work status; ethnicity; parental status; status of the learning disabled person; respondent’s social context at the time of interview; number of children in the family; parental wishes regarding future care of the learning disabled person; respondent’s wishes regarding future care; the presence and type of futures plan in place; respondent concerns about the future and respondent needs; and advice to others. This information was then summarised across all 15 interviews and put into a single chart (Appendix K).