| Data sourcing, processing and preparation: |
The research using qualitative methods was carried out in two overlapping phases. We first conducted four workshops (PW) with professionals (n=26, Table 1), focusing on their perceptions and experiences of providing support to carriers from diverse ethnic backgrounds. The participants ranged from a paediatric haematologist, haemoglobinopathy specialist nurses and counsellors, midwives, community support workers from voluntary sector organisations, centre managers, a young people’s nurse for long term conditions, and outreach and communication officers working across the NHS and the voluntary sectors. Participants also had an opportunity to comment on the new suite of carrier leaflets introduced on request from the Outreach Office of the National Screening Programme for Sickle Cell and Thalassaemia. This helped further focus our discussion on issues of information and support. We also held four focus group discussions (FFFG) with family members and friends (n= 29, Table 2) who knew a carrier (but were not a carrier themselves), to understand what they thought about the experiences of carriers within the communities.
The second phase involved in-depth interviews with a theoretical sample of 57 participants (33 women, 24 men, Table 3) between 17-70 years of age (Table 4), recorded digitally and translated (n=6)/transcribed. All the interviews were carried out by the same researcher (SC). Apart from 6 students, a majority of the participants were engaged in occupations ranging from academics, business, banking, sales, school teaching, taxi driving, catering, healthcare, a couple who had retired and a few who were not working due to unrelated health reasons or had never worked outside home. The age range allowed us to explore the different policy pathways and personal circumstances leading to the identification of being a carrier, covering different phases of the life-course across the dataset. Even though a majority of the participants (34) were above 36 years of age, only 13 (of 57) were born outside the UK.
The participants represented five broad ethnic backgrounds African (9), African-Caribbean (18); South Asian (19); Greek, Cypriot, Turkish (9) and white/mixed heritage (2) with complex family histories and plural ethnic identities operating transnationally (Table 6). 6 participants chose to be interviewed in Urdu/Punjabi (these were translated and transcribed), SC and some of the South Asian participants switched between Urdu and English, given the context of the conversation. Only in once instance, where the participant insisted on speaking in English rather than Urdu/Punjabi, the content was, at times, difficult to follow, requiring going back to the recording. In certain cases, the presence or absence of transnational kinship networks contributed significantly to the understanding and experience of being a carrier, irrespective of where the participant was born and brought up. The only white participant, a thalassaemia carrier, tried to forge a possible Mediterranean link through her grandmother who she thought had a ‘strange, Jewish sounding name’. Even though SC followed self- ascribed descriptions within categories, it was important to probe the links with dominant assumptions about the trait/condition being associated with particular ethnic groups, the biographical salience of the trait at a demotic level. For example, it was important to analyse why even though FP4 acknowledged her ‘mixed race’ and would tick the White/Caribbean box on a census form, she did not feel that she was ‘half black’ or ‘half Caribbean’ – since she had only recently discovered who her biological father was and had no emotional family/kinship ties with his side of the family.
In principle, we excluded children under 16 years and people who had the condition – with the exception of one man in his early 50s who was, later in his life, re-diagnosed as having a complex sickle beta thalassaemia disorder. We also interviewed a woman of Portuguese origin but did not include data from her interview in the dataset or analysis since she had not had any contact with the services related to her carrier status. In two families, a child with SCD had undergone a bone marrow transplant while a third had lost a child following a transplant; one family had refused the option, while another had stored cord blood for a future transplant. Two women were undergoing fertility treatment, one of whom had a baby during the life of the project. Sadly, one of the participants died due to an unrelated illness, before the research was completed.
Each participant was interviewed once, and 25 of the 57 interviews involved a range of family relationships (Table 5). 52 interviews took place at the participant’s home, and the remaining 5 rest were conducted either at a community centre or a friend’s residence, each lasting between one and a half to two hours and were recorded digitally (except in one case where permission was denied). Each participant was interviewed once, though in 12 cases, more than one member of a family was interviewed. Hence, 27 of the 57 interviews involved a range of intra and intergenerational relationships within a family, as reflected in Table 5. Since a majority of the participants were recruited through our voluntary sector collaborators and likely to be biased towards the ideas and practices of these organisations, we made an effort at snowballing outside these networks and interviewed 10 participants (WP4; WP5; WP10; WP35; WP36; FP44;WP49; WP50; MP51; MP57) . For issues of parity caused by the parallel recruitment strategy to another study being conducted at York, at some of these sites, we offered a cash gift in addition to a certificate of participation to each participant.
A thematic guide (see topic guide for carriers) was used for conducting the interviews drawn from relevant literature (screening policy, health service research, sociology and anthropology), and the focus group discussions with family, friends and professionals. For the purposes of the summary of main findings written for professionals, we used thematic analysis based on biographical case studies to provide an overview of the similarities and differences within and across families of carriers. Each case study focused on the personal context within which the meaning and implications of carrier status are located, whilst relating it to the wider social and policy context. Moving from the individual to the wider social and structural factors (including the impact of policy or interaction with professionals) avoids the danger of predefining ethnicity as the only/main factor underpinning the experience of carriers (for a copy of this summary, please visit http://www.york.ac.uk/media/healthsciences/documents/research/public-health/ESRC).
SC used interactional analysis in writing a methodological paper for Sage research methods online (to be published early in the newyear), titled, Interactional analysis of in-depth interviews: Interpreting ideas and experiences of genetic risk (a link will be posted on the Departmental ESRC webpage).
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| Rights owners: |
| Name |
Affiliation |
ORCID (as URL) |
| Atkin Karl |
York University |
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| Contact: |
| Name | Email | Affiliation | ORCID (as URL) |
|---|
| Chatttoo , Sangeeta | sangeeta.chattoo@yorkk.ac.uk | University of York | Unspecified |
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| Notes on access: |
The Data Collection only consists of metadata and documentation as the data could not be archived due to legal, ethical or commercial constraints. For further information, please contact the contact person for this data collection.
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| Publisher: |
UK Data Archive
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| Last modified: |
14 Jul 2017 08:36
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