Participants sampling technique

Interview participants were initially to come from or be resident in Wales, given that the research funder had a clear interest in the implications of research for Welsh services. However, this proved to be a challenge for two reasons. The first issue was that due to the small numbers of parent carers of BME children

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with LLCs, recruiting from Wales alone could have led to the parent carer participants being easily recognised and anonymity would not be guaranteed. In Wales, only 4.4% of the population are from BME groups (Census, 2011). This is a specialised sector where numbers are small and people can be easily identified, even from a broad description. Several professionals working with this group of families felt this would discourage participants from being involved. Widening the group to include participants from both England and Wales was one way of ensuring anonymity for participants. Another approach was to not name any towns or cities. All gatekeepers were asked to approach potential participants individually rather than in a group setting. Snowballing as a sampling technique was avoided. A strategy for recruiting parent participants could have been to ask them to refer other parents they may know in a similar situation, but this was avoided. In terms of pseudonyms, I ensured out of respect for their religious and cultural background that each child was given a pseudonym which tallied with their religion and culture. But the names were specifically very different from their real names. None of the parents are named in any way in the study, but instead referred to as the child’s mother or father. Although some agencies and professionals who participated requested that they or their agency be acknowledged for contributing to the study, they were told this was not possible as it could compromise, in particular, the anonymity of the parent participants. Steps were taken to ensure confidentiality of participants, but the risk could not be wholly removed. Children with LLCs have a very different trajectory, compared to adults with LLCs, and can be accessing formal support through health and social care for many years. This could contribute to the risk of identifying participants.

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The second issue was that when I initially proposed this research, I had good links with a third sector organisation that worked closely with this group of families. However, at the time of data generation, this resource was no longer available. When I discussed my research with colleagues in England, they expressed an interest and were keen to be involved, and support recruitment of participants. The professionals were also recruited from both England and Wales.

The approach to recruiting both sets of participants was through purposive (or non-probability) sampling, whereby participants are recruited in a targeted and deliberate manner (Punch and Oancea, 2014). In purposive sampling, researchers select participants to be included in the sample to meet their specific needs (Cohen, et al, 2003). Due to the nature of the research, it was imperative that participants who met certain criteria were specifically targeted (see inclusion and exclusion criteria below – section 5.2).

The research was with a minority group, within a minority (BME; parent carers of children with LLCs), and in relation to a sensitive topic. This recruitment strategy helped to engage with participants relevant to the research question. Non- probability sampling is typical of research where an interpretivist approach is adopted. This approach is known to involve a smaller sample size (in comparison to quantitative research), where data collected are much more detailed (Oliver, 2008). The main source of parent participants was organisations working with or likely to come into contact with this group. There were seven organisations in

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total. Six organisations were Welsh, and four English. Professionals were recruited through children’s hospices, hospitals, and special schools. Four professionals were from Wales and six from England. Their professional backgrounds were varied, and the sample included social workers, teachers, and health professionals. There was also diversity in terms of ethnicity. Of the ten professionals interviewed, three were from BME groups. This focused approach helped target participants who could provide the appropriate information needed to meet the research objectives (Mukherji and Albon, 2015). All participants were been given pseudonyms.

In terms of the socio-economic profile of the parent carer participants, the majority were well-educated, middle class individuals. It has been observed that the socio-economic position can be a determinant of participation in research, with participation rates lower in households with a lower socio-economic profile (Demarest, et al. 2012). Future research could address this issue by utilising specific strategies targeting the participation of lower socio-economic groups.

69 Please see below participant details:

PARENTS INTERVIEWED (20) Pseudonym of Child Age of child Mother / Father interviewed Ethnicity Language interviewed in Religion Resident in England or Wales

Aisha 17 Mother Indian English Muslim England

Farhan 6 Mother and Father Pakistani English (mother) Urdu (father) Muslim England

Hanif 5 Father Bangladeshi English Muslim Wales

Dana 9 Mother Pakistani English Muslim England

Rishi 6 Mother Indian English Sikh Wales

Iona 8 Mother African English Christian Wales

Abbas 16 Mother and Father Pakistani Urdu (father) and Punjabi (mother) Muslim England

Zidane 7 Mother and Father

Indian English and Urdu (both parents used a mixture of both languages) Muslim England

Eshan 8 Mother Indian Urdu / Hindi Sikh England

Nadir 5 Mother and Father

Pakistani English Muslim England

Chand 18 Mother Indian English Sikh England

Adnan 18 Father Pakistani English Muslim England

Rehana 13 Mother Pakistani English Muslim Wales

Ruby 16 Mother and Father

Indian English Hindu England

70 PROFESSIONALS INTERVIEWED (10) Pseudonym Type of organisation England / Wales Social care, health, education professional? Ethnicity 1. Angela Hospice (Charity)

England Social worker African- Caribbean

2. Maria NHS Wales Nurse White

3. Teresa Hospice (Charity)

Wales Social worker White

4. Karen Hospice

(Charity)

Wales Nurse White

5. Nadine School Wales Teacher White

6. Radha Hospice

(Charity)

England Social worker Indian

7. Hema Hospice

(Charity)

England Social worker Indian

8. Rosie Health Wales Nurse White

9. Mary Health Wales Social care White

10. Anna Hospice

(Charity)

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3.5.2. Inclusion and exclusion criteria