Workstream 1: patient-centred case studies

Eighteen case studies were completed over 14 months between the end of February 2019 and the end of April 2020. Figure 3 describes the cumulative recruitment, showing when each case study was initiated by recruitment of a patient and when case studies reached completion. As discussed in Chapter 2, the length of time taken to complete each case study was up to 6 months. Before the start of the COVID-19 pandemic, we had recruited 18 of the maximum plan of 20 cases; further recruitment stopped at this time point. Although some interviews did take place after the national lockdown in March 2020, with the generosity of participants already recruited, the decision was made not to undertake any more interviews with HCPs.

FIGURE 3

Cumulative case study commencement and completion.

Each of the patients in the cases was given a pseudonym beginning with ‘C’. The details of the composition of each of the 18 case studies, including the number of interviews completed with each participant, are described in Table 1.

TABLE 1

Patient case study composition

Sixteen cases involved patient participants and seven of these 16 cases comprised interviews with patients, their FCGs and their HCPs. Three of these 16 cases comprised interviews just with patients and their HCP and six out of the 16 cases were composed of interviews with patients and their FCGs. Two case studies did not include interviews with the patient, but comprised interviews with two FCGs and a HCP. In these two cases, the research team discussed with the FCGs the provisions of the Mental Capacity Act 2005² with regard to research and identified with the FCGs whether their relative had appointed an attorney for health and welfare or had a court-appointed deputy. In these two cases, a FCG agreed to be the consultee for the study.

Four patients died during the study. We were able to carry out post-bereavement interviews with two FCGs from the same case.

We interviewed HCPs nominated by 11 patients, all of whom were nurses. We were able to review the medical notes of 13 patient participants. A total of 93 interviews were conducted.

The 18 patients were recruited via a diversity of care providers: three hospices (10/18), acute trusts (2/18), primary care (1/18), one community trust (3/18) and self-referral through a community organisation (2/18). A detailed breakdown of the patient participant demographic characteristics is given in Table 2. In summary, the age of the participants ranged between 40 and 96 years. The majority (n = 11) had cancer. Eleven of the participants were female and seven were male. Ten participants described their ethnicity as Indian, three as Caribbean, two as African. The remaining three participants described themselves as Pakistani, former Yugoslavian and Chinese. Just over one-third of the participants described their faith as Christian (n = 7), with a further one-third describing themselves as Hindu (n = 6). Other participants were Muslim (n = 3), Jain (n = 1) and Buddhist (n = 1). Their living and social circumstances were quite diverse. The majority (n = 8) lived with a spouse, three lived alone as a sole adult and four had dependent children. Two lived with their adult children. Four of the case studies required at least one participant to be interviewed with the assistance of an interpreter.

TABLE 2

Workstream 1: characteristics of the 18 patients

Workstream 2: bereaved family caregivers

Nineteen individual interviews were completed with BFCGs between February 2019 and May 2020. Figure 4 illustrates the recruitment of participants over the course of the study.

FIGURE 4

Workstream 2: recruitment of BFCGs.

The 19 participants were recruited from two hospices (10/19), a community trust (1/19), two community groups (5/19) and an acute trust (1/19), and by self-referral (2/19). The demographic details of the BFCG participants are described in Table 3. Each of the BFCGs is identified by the pseudonym of the deceased patient, who have all been given pseudonyms that begin with ‘B’. In summary, the majority of the BFCGs described their ethnicity as Indian (n = 11), four as African Caribbean, two as Pakistani, and one each as British Indian and British Asian. Thirteen were female and six were male. Seven were spouses and eight were children, with others being siblings (n = 2), a grandchild (n = 1) and a daughter-in-law (n = 1). One participant was interviewed in Punjabi by a bilingual member of the research team.

TABLE 3

Details of the BFCGs

The deceased relatives’ demographic characteristics, as described by the BFCGs, are detailed in Table 4. In summary, the majority of the deceased had cancer [n = 11 (58%)]. Eleven were female and eight were male. Their ethnicity was described as Indian or Indian and African (n = 12), African Caribbean (n = 4) and Pakistani (n = 1), and their faith was described as Hindu (n = 8), Muslim (n = 6), Christian (n = 4) and Sikh (n = 1).

TABLE 4

Workstream 2: characteristics of the deceased family member

Workstream 3: stakeholder workshops

Between October 2020 and the end of April 2021, through a process of snowballing, > 140 potential participants were contacted (see details in Chapter 2). This resulted in a total of 11 virtual discussion workshops being held with 37 stakeholders between December 2020 and the end of April 2021. Another 13 participants completed workbooks. This resulted in a total of 50 participants in WS3, which comprised 18 laypeople or community and faith leaders, 19 HCPs, seven academics and six educators.

Most of the 18 laypeople and community or faith leaders described their ethnicity as Indian (n = 5); other ethnicities given were white (n = 3), Bangladeshi (n = 2), Pakistani (n = 1), Indian and Pakistani (n = 1), British Sikh (n = 1), Asian (n = 1), England (n = 1), white and Asian (n = 1), English (n = 1) and African (n = 1). Eleven were female. The key characteristics of the laypeople and community or faith leaders are detailed in Table 5.

TABLE 5

Characteristics of the laypeople and community or faith leaders

The majority of the 19 HCP participants were nurses (n = 9); the others were doctors (including GPs) (n = 8), a care home manger (n = 1) and a public health programme manager (n = 1). Most described their ethnicity as white (this includes white British) (n = 13), with the rest describing themselves as African (n = 3), Indian (n = 2) and Pakistani (n = 1). Thirteen were female. Their detailed characteristics are described in Table 6.

TABLE 6

Characteristics of HCP stakeholders

The majority of the seven academics described themselves as having an interest in end-of-life issues (n = 4). They described their ethnicity as white (n = 5), white and Asian (n = 1) and Sri Lankan British (n = 1). Six were female. Their detailed characteristics as they provided are described in Table 7.

TABLE 7

Characteristics of academic stakeholders

Two of the six educators described themselves as higher education lecturers; there was also a clinical educator, a GP, an educator, and a health and social care worker (n = 1). They described their ethnicity as white British (n = 5) and Indian (n = 1). Four were female. Their detailed characteristics as they provided them are described in Table 8.

TABLE 8

Characteristics of educator stakeholders

Conclusion

This chapter has presented background information on the 115 individual participants who took part in the study and the different sources and extent of data collected. It includes a brief summary of the process of recruitment and detailed characteristics of participants in WSs 1, 2 and 3. The next chapter gives a detailed account of the findings of WS1 and WS2.