The lived experiences of the Sikh population of South East England when caring for a dying relative at home.

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The lived experiences of the Sikh population of south east England when caring for a dying relative at home Margaret Mary Cowan

© 2014 MA Healthcare Ltd

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ver the past 20 years there has been growing interest in the health of black and minority ethnic groups in the UK, and there is growing evidence that the palliative care needs of these groups are not being met by established palliative care providers (Worth et al, 2009; Department of Health (DH), 2010; 2011). The Sikh religion is reported to be the third largest among minority populations in the UK, adhered to by 8% of the population. In south east England Sikhism is one of the major five religions, with pockets of large Sikh communities evident throughout the area (Office for National Statistics, 2011). Despite an increasing emphasis from the DH on ensuring equity of care at the end of life (DH, 2011), South Asian people in the UK are less likely to access specialist palliative care (SPC) services (Koffman, 2010; Coupland et al, 2011; Hussain, 2011). The reasons for poor uptake of care in the UK’s minority Sikh population are multifactorial. In 2006, the National Council for Palliative Care identified that palliative care was predominantly offered to people with cancer, whereas South Asian people in the UK have a higher incidence of non-malignant chronic conditions (Astin and Atkin, 2010). In addition, South Asian communities identify home as a haven that allows them to practice their religious and cultural rituals for their dying relatives (Venkatasalu et al, 2013). However, there is a dearth of evidence on the informal care of relatives in the South Asian population. Adamson and Donovan (2005), in a study of South Asian and Afro-Caribbean carers, described the caring process as ‘normal disruption’. However, Lawrence et al (2008) compared the experiences of White, South Asian, and AfroCaribbean carers and found that South Asian carers considered asking for professional help to be an admission of failure. Katbamna et al (2004) found that South Asian women are most likely to fulfill the caring role and may juggle this with work commitments.

International Journal of Palliative Nursing 2014, Vol 20, No 4

Abstract

Background: Few ethnic minorities access specialist palliative care (SPC) services when caring for a dying relative at home. Objective: This project aimed to explore and understand the experiences of the Sikh population of south east England when caring for a dying relative at home without support from SPC. Methods: Six semi-structured interviews were conducted with carers in Punjabi or English and the transcripts were analysed using interpretative phenomenology. Results: Five super-ordinate themes were identified: factors leading to the caring role, emotional effects of caring on the carer, impact of caring on the wider family, influence of health-care services, and religious and cultural influence. The most common emergent theme was lack of support from health professionals, which emerged from a lack of awareness of services. A sense of duty and hard work was apparent throughout, and appeared to sustain the family. There seemed to be a sense of duty to care for the relative at home. Financial concerns were expressed frequently. The decision to adopt the caring role appeared to be made by the entire family. The Sikh faith seemed to give strength to carers. There appeared to be heightened awareness of what other community members think of carers’ actions. Conclusions: There is a need for health professionals to reach out to this population to increase awareness of and trust in the services that are available to support care at the end of life. However, an unwillingness to accept assistance may persist in some cases. Key words: Death and dying l Minority Sikh population l Qualitative l Experiences l Interpretative phenomenology l Culture

Aim The aim of this study was to explore and understand the Sikh population of south east England’s experiences of caring for a dying relative at home without support from local SPC teams.

Methods As the phenomenon being investigated was the human experience of caring for a dying relative, a qualitative approach was selected. Understanding human experiences and uncovering meaning is the basis of a phenomenological approach to research, a concept introduced by Husserl in the early 20th century (Jones, 2001). Interpretative

Margaret Mary Cowan is Advanced Nurse Practitioner, Home Care Team and Day Therapy Unit, Ellenor Lions Hospices, Cold Harbour Road, Gravesend DA11 7HQ, England Email: margaret-mary.cowan@ ellenorlions.org

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Posters displayed in gurdwaras in Dartford and Gravesend

0 responses

Posters displayed in Sikh day centres in Dartford and Gravesend

6 questionnaires returned

Posters displayed in local shops and libraries

0 responses

Word of mouth

2 participants identified

Emails to distribution lists of local community organisations

0 responses

2 people not fitting criteria

2 letters sent informing of ineligibility

4 people suitable for interview 6 participants interviewed in total 2 participants interviewed

Figure 1. Study sampling process

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a dying relative at home, be able to read and understand English or Punjabi, and be able to give written consent. People were excluded if they had been bereaved within the past 3 months, were Punjabi-speaking with impaired hearing, or had accessed SPC services. Table 1 lists the demographic details of the sample.

Ethical approval Ethical approval for the study was granted by King’s College London’s Research Ethics Subcommittee (Psychiatry, Nursing and Midwifery; PNM/11/12-67).

Sample

Data collection

As minority South Asian participants are renowned for being ‘hard to reach’ (Lund and Denicolo, 2012), purposive sampling was chosen. A local Sikh community organisation was approached to advertise the study invitation. The researcher met self-referred bereaved Sikh carers who cared for their dying relative at home without support of local palliative care services. The purpose of the study was explained using bilingual (English and Punjabi) participant information sheets. However, only four participants responded, so snowball sampling was also used and yielded two further participants. Snowball sampling uses local networks to spread awareness of the research and is an acceptable method of identifying participants in a hidden population (Proctor et al, 2010). Figure 1 shows the study sampling process. Potential participants had to be a member of the Sikh community, have experience of caring for

All participants completed a written consent form in English or Punjabi prior to data collection, which occurred via semi-structured interviews. Semi-structured or unstructured interviews are best-suited when dealing with sensitive topics, although in cross-language research, they are often difficult to facilitate (Squires, 2008; Elmir et al, 2011). The interviews were conducted mostly in participants’ homes at their request, with one conducted in community halls (Speziale and Carpenter, 2003). The interviews lasted 21–78 minutes, dependant on the participants’ literacy skills and their perceived level of understanding. Furthermore, if any distress was noted the interviewer allowed time to reassure the participant. The interviews were conducted in Punjabi or English depending on participant choice. A female colleague fluent in English and Punjabi acted as translator throughout the study,


phenomenological analysis explores how participants make sense of their personal situation, focusing on the meanings of particular experiences and events and on their effects. This method creates a platform for a ‘silent population’ to tell their story. It accepts that researchers are taking part in the study and allows them to reflect on and interpret the experiences. It involves making a detailed analysis of each case, and the aim is to produce an in-depth interpretative account of a small sample rather than a thinner report of a large sample (Smith et al, 2009).



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Table 1. Participant characteristics Participant

Age (years)

Patient relationship to caregiver

Patient diagnosis

Interview language

Period of care

Time since bereavement

Interview location

P1

51–60

Mother-in-law

Oesophageal cancer

Punjabi

10 weeks

24 months

Home

P2

31–40

Grandmother

Cancer

English

4 weeks

6 months

Home

P3

61–70

Husband

Dementia/stroke

Punjabi

30 months

27 months

Home

P4

61–70

Mother

Renal failure

Punjabi/English

24 months

22 months

Home

P5

41–50

Father

Dementia

English

30 months

15 months

Home

P6

61–70

Husband

Stomach cancer

Punjabi

4 weeks

12 months

Day centre

ensuring consistency. As a novice non-professional translator the researcher had to trust that a true translation had taken place, which reduces reliability and increases the possibility of bias (Temple and Young, 2004; Squires, 2008). However, this was a much more favourable option than asking a family member to translate questions for the participant and communicate their responses (Mill and Ogilvie, 2003). To avoid known pitfalls of cross-linguistic research (Twinn, 1997; Temple and Edwards, 2004; Temple and Young, 2004; Squires, 2008) (i.e. issues around the use of an interpreter), a pilot interview was conducted. This had two outcomes relating to the use of the translator. First, during interviews in Punjabi, the researcher posed the question in English, the interpreter translated this, and the participant responded directly to the researcher in Punjabi with the interpreter offering a translation. This process allowed the researcher to identify any non-verbal communications as field notes, to help during data analysis. Second, a post-transcription meeting with the translator allowed the clarification of any unclear Punjabi words and sentences. Furthermore, a sample of one Punjabi and one English audio-recording and transcription were examined by a peer professional who confirmed that both transcriptions were accurate representations of the interviews.


Data analysis Concurrent data analysis was undertaken by the researcher. Transcripts were analysed using Smith et al’s (2009) six-step cyclical process of interpretative phenomenological analysis. Line-by-line and paragraph-by-paragraph reading and rereading of the transcripts were undertaken to note similarities and dissimilarities. Notes on emergent themes were then collated to identify superordinate themes.

Results There were five superordinate themes: factors leading to the caring role, emotional effects of


caring on the carer, impact of caring on the wider family, influence of health-care services, and religious and cultural influences.

Factors leading to the caring role Participants reported various factors that led to them adopting an informal caring role for their dying relatives. This included a fulfilling family role, fear of cost, and lack of awareness of professional support. Family-led factors were most frequently expressed as the major reason for caring. Each participant recalled the memories of caring for their relative with accuracy and was keen to explain their reasons for adopting the role. The decision appeared to be made mutually within the family. As is common in this Sikh population, the participants appeared to have great respect for their elders combined with a desire to fulfill their preferred place of care. It appeared that they felt their care was best and they sometimes appeared untrusting of others, including health professionals. ‘My mother-in-law did not want to be looked after anywhere else. I was very close to her so I did not feel that I was doing any [extra] work. I explained that I would look after her as much as I can. I wanted what my mother-in-law wanted. ... There was a time when her daughter wanted to take her to hospital but it was close to the end and she wanted to die at home.’ Participant (P) 1 ‘I liked the fact that he was right in front of me all the time and I was worried that if he was elsewhere he would not eat food from someone else. I would worry.’ P3 ‘She’s better off with me. We did a good thing we didn’t put her in a home.’ P4

Financial concerns were raised spontaneously on 20 occasions, making them one of the most frequently expressed concerns. Finances dominated

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several aspects of the interviews, and two interviewees appeared concerned that financial factors affected the care that could be provided. One participant felt that others might think she was caring just to claim her relative’s state benefit. ‘Basically there’s a stigma attached to [it, with] a lot of people saying you look after your relative because for the money. I mean like for the land they have in their country, looking after them because you’re after their money. I say let people talk if they want to talk ...’ P1 ‘I used to be worried about things like that [money] when we used to work together but now that I’m left on my own I worry I can’t afford to pay [for care].’ P3 ‘The nursing homes are to do with money and that scares people it does.’ P5

A general lack of awareness of SPC services was voiced spontaneously 18 times and may have accounted for some carers’ unsupported periods. In particular, there was a lack of awareness of the referral criteria for patients with chronic non-malignant disease and the availability of community palliative care services for these patients. Furthermore, there appeared to be a misunderstanding that hospices, hospitals, and care homes have strict visiting criteria. ‘A lot of people think that the hospice is not accessible to them. Some people do not know what the hospice stands for and it’s a new experience for them. I know in the hospice you could not be there 24 hours a day, there is a time frame to visit, there is a limit to how many visitors you can fit into a room.’ P2 ‘To be fair I didn’t know anything about it [the hospice]. I didn’t think about how it works, who to go to, you know. I just thought it was like a nursing home but for people who were terminal but you had to pay. I think it’s a big thing in the Asian community they do not know.’ P6 ‘So your hospice, you actually go into people’s homes. We don’t even know about that, we don’t even know about hospice at home service!’ P3

Emotional effects of caring on the carer Strong emotions emerged as participants described their experiences. There appeared to be a deep willingness to care and this role was accepted readily. Furthermore, pride and loyalty, although difficult to sustain over a long

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period, were expressed as overwhelming positive emotions. These rewarding experiences allowed the carers to remain in control and encouraged them to continue. However, there appeared to be periods when the carers felt alone and unsupported by health professionals, which affected them directly and ultimately the wider family. Some participants expressed strong negative emotions and on reflection some could not imagine how they coped with the caring role. ‘I’m very pleased about the way I looked after him and what I did for him. I can’t think about myself really only about looking after him. I never left the house really. I didn’t have the time to go out or go to the temple, nothing like that.’ P3 ‘Obviously at first it was rewarding but then it became very difficult just watching ... dealing with it ... watching him.’ P3 ‘I don’t know how I did it.’ P3 ‘It was a nightmare it was. I‘d wake up in the morning and sometimes I’d think I was dreaming and she wasn’t like that but it just got worse and worse.’ P2

Impact of caring on the wider family Each participant spontaneously expressed that their experience would not have been possible without family support, and teamwork appeared to be the most common positive impact of caring. ‘I explained to the family that I needed to go to work from 10am to 3pm and when I come home I take over. I had the help, the whole family helped.’ P1 ‘Our personal thing is that he deserved to be looked after with respect. We can talk about him in a way with pride, not being funny, Asian community does not think highly of people being sent to old people’s homes or hospices.’ P5

The desire for respect and the hope that they could be proud of their caring role was a driving force for one participant. Another felt a mutual respect for their relative as a carer. ‘I felt very happy, respected but I had so much respect for her [mother-in-law]. She never complained.’ P1 ‘I can always say we can talk about Dad with pride you know.’ P3


❛Despite an increasing emphasis from the Department of Health on ensuring equity of care at the end of life ... South Asian people in the UK are less likely to access specialist palliative care services ...❜



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However, increases in family tensions as a result of caring were expressed in several interviews, and one participant felt completely unsupported by family and health professionals. ‘My auntie comes over from Canada so she stays. She stayed with me the night. I was upset; you need a second person, a third person. It was OK but it’s hard, you can’t say it’s easy. You’re stuck inside.’ P3 ‘I was not able to cope and I admit that. If someone else was there with me I would have been fine. I was on my own.’ P6

There was an overwhelming sense that this generation of Sikh carers would adopt care at home without question, but there were indications that successive generations may not be so dedicated to this ethos. ‘I was brought up very nicely—this [caring for mother] is payback; nothing is free. I told my mother you are very lucky [because] our children they are not the same they will send us off to a home.’ P4 ‘It was having no life, not going anywhere, not going out as a family. We didn’t go anywhere and we just stayed every day in.’ P5

Influence of health-care services With regard to support from health professionals, there were 46 negative comments and only 12 positive comments. A basic lack of equipment was one major frustration and was mentioned on 14 occasions. ‘Yes doctors say ... “No Mrs K you cannot look after him.” ... I try to bring him home and they give me paper for hospital bed and a pad and nothing else.’ P3


‘They [health professionals] didn’t really support him in any way, I found it really difficult, and they didn’t provide any bed sheets or equipment. They just used to have a little stool and bathe him on that.’ P6

The GP was the most commonly criticised health professional, and it appeared that GP input was reactive rather than proactive on several occasions. Contact with the GP appeared to be made only when the carers reached crisis point and often resulted in a hospital admission. ‘He come if we call. Once only he come. Nurses


ask him to visit but he just phone. He says just give water and paracetamol.’ P4 ‘One GP always diagnosed over the phone and was hardly ever involved unless it was too serious and he had to go into hospital.’ P5

However, a positive attitude toward health professionals was expressed in small details of care, helping to redress the balance of the negative experiences.

❛In particular, there was a lack of awareness of the referral criteria for patients with chronic non-malignant disease ...❜

‘District nurse used to come over and check everything and she would take this back to GP. They used to be quite supportive.’ P6 ‘Our GP, she was helpful in the whole thing. She is the one who felt my gran’s tummy and knew it wasn’t a hernia because my gran used to go to her.’ P2

Religious and cultural influences It was evident that the Sikh faith was important to most of the participants, but the interviews were not dominated by this topic. It appeared that some participants depended on their faith for the strength to continue. Health professionals also appeared respectful to the Sikh religion. ‘I had a bit of a dilemma when I thought he is better off with God, God is protecting him, he’s not ill no more but on the other side I’m thinking I’d rather have him here with me.’ P3 ‘It was a relief really when he died. I think we prayed every day that please take him.’ P5 ‘I used to go to the temple every day so the nurse would phone me and say I’m making my way to you now. I’ll clean him now and you go to the temple so that was really nice.’ P6

It is often difficult to differentiate between religious and cultural influences. Participants appeared to want to conform to their Sikh family traditions but were influenced by their decision to live in south east England and by Western attitudes. Three carers remained determined to complete the care for their relative at home rather than transfer them to a care home. ‘I have heard that families just send their relatives away, not just Punjabi community—this makes me sad.’ P1 ‘So people would have talked, very much, very much so. It’s not something you do [sending

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❛... there appeared to be periods when the carers felt alone and unsupported by health professionals ...❜

relatives to a care home] but it’s getting more and more common.’ P5 ‘We should look after our elders. This is our life. I feel better inside.’ P4

Communication difficulties were named in two interviews as reasons for lack of uptake of respite services. However, there was also a strong sense that the family should act as an advocate for their relative to ensure their safety, which was one of the reasons for adopting home care. ‘My husband he cannot speak English, it’s very difficult, so if he was in somewhere where people cannot communicate with him, that would be difficult.’ P6 ‘It’s like when you are ill you want to communicate so you don’t want to have to put up with the stress of not being able to communicate properly as well as coping with illness so that’s why I think a lot of Indian people don’t come to hospice.’ P2

Discussion This study aimed to provide insight into the experiences of the Sikh population of south east England when caring for relatives at the end of life. It suggests that although they feel they have a duty to care for relatives at home, they also feel unsupported by health professionals, which makes the experience more traumatic. In concurrence with a study by Sambhi and Cole (1990), participants in this study had not identified that they were in a caring role. All were female, supporting the suggestion that the woman’s role in South Asian culture is home-based. However, this may be more difficult to define in this changing culture where the younger generation are adopting a more Western way of life (Seabrooke and Milne, 2004; Nijjar, 2012). Munck et al (2008), reporting on feelings of inadequacy in carers, found that balancing care needs between professionals and informal carers allowed more patients to remain at home toward the end of their life. These insecurities were also reported by Katbamna et al (2004), who found limited support in both the nuclear and extended household. Moreover, they found that cultural attitudes to illness in the South Asian population often discouraged carers from seeking help, which has been confirmed in the present study. Financial concerns with respect to the caring role were discussed by three participants on 20 occasions. Adamson and Donovan (2005) shared similar findings, reporting that carers felt they

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could only have overnight support if they subsidised the care. Conversely, Funk et al (2010), in a review of home-based carers’ experiences at the end-of-life, found that a lack of information, geographical location, and reluctance to express needs were barriers to supporting care, whereas financial concerns were not reported. This phenomenon may only be prevalent in the South Asian population of south east England, but this requires further research. The current study suggests that lack of awareness of palliative care was a major factor in relatives adopting the caring role. This is significant as the research was initiated by a community palliative care team. Fountain (1999) found that reasons for lack of referral of patients with non-malignant disease included a strong family support network. Communication difficulties and a higher incidence of deaths from coronary heart disease with a smaller risk of dying from cancer were also given as reasons for non-referral to SPC. Both positive and negative personal emotions were expressed in this study. Brobäck and Berterö (2003) determined that the caring experience is stressful and often burdensome, which affects carers psychologically and can cause stress-related illnesses (Carers UK, 2008). Furthermore, Hunt and Smith (2004) stated that the caring role can have both a physical and an emotional impact and that this needs to be recognised. This may prove difficult in the Sikh population owing to language barriers and their status in the community (Carers UK, 2007; Worth et al, 2009). Caring as part of a team was expressed by the participants as one factor in managing to fulfill care at home. Lawrence et al (2008) concluded that health professionals should encourage team-working within the wider family. However, Seabrooke and Milne (2004) found that even when carers were under extreme stress, they were unwilling to relinquish their caring role unless it was to another trusted relative. This may be related to the common Sikh belief that providing physical and emotional support to their relatives is a means of achieving unity with God (Gatrad et al, 2003). Lack of support and uncoordinated care from health professionals were highlighted in this study. In a recently published study of bereaved carers (DH, 2012) only half of the respondents surveyed felt that they had the professional support they needed. Connell et al (2010), investigating the impact of health-care services on palliative care patients and their carers, found that services were uncoordinated and left carers


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feeling insecure. A national primary care audit of end-of-life care (National Association for End of Life Care, 2009) found that only 25% of deaths noted were from patients on a palliative care register. GPs are of paramount importance in identifying patients nearing their final year of life as this allows advance care planning and better coordinated care, making achieving preferred place of death more likely (Gold Standards Framework Centre, 2010). Studies by Gatrad et al (2003), Randhawa and Owens (2004), and Koffman et al (2007), in which participants were predominantly Indian, found that lack of awareness was more pronounced in those from minority ethnic groups; however, it is not known whether this determined the carers’ actions. This study found that faith was important to some participants and improved their ability to cope as carers. Worth et al (2009), in a study of Sikhs and Muslims in Scotland, found that some participants struggled to reconcile their present suffering with the promise of a good afterlife, and they sought God’s approval through positive thinking. Communication problems appeared to be a major factor in participants caring for their relatives at home and their reluctance to consider transferring them to a care home or hospice. This finding is not exclusive to the current study, with similar findings reported by Randhawa et al, (2003), Owens and Randhawa (2004), and Lawrence et al (2008). It is well recognised that an inability to speak the dominant language can lead to unhappiness or a late referral to appropriate palliative care services, at which point often there is little to be done other than crisis management (Firth, 2001; Randhawa et al, 2003; Ahmed et al, 2004; Seabrooke and Milne, 2004; Gunaratnam, 2007).


Limitations The study used a self-selecting sample that included only women aged 31–70 years. Further research is needed to explore the experiences of young carers and male carers. Data analysis was performed by a single researcher, which could potentially limit the quality of interpretation. Although the researcher attempted to maintain rigour in translation-based issues, the study findings need to be interpreted with caution owing to potential translator-centred issues. Importantly, as the interviews in Punjabi were not translated and transcribed verbatim, the transcripts solely contain the translator’s responses, limiting the trustworthiness of the findings. Furthermore, as this study only investigated reported views of caring for a dying relative at home, observation would be needed to validate the findings.


Implications for policy and practice Local SPC groups should take the lead on informing the local Clinical Commissioning Group about inequities of care in the Sikh population, and GPs should be encouraged to register minority patients with end-stage non-malignant disease on their palliative care registers. The opinion among members of the Sikh population that care homes and hospices are not culturally competent to care for Sikh patients at the end of life requires a response. Outreach clinics should be set up in local gurdwaras (temples) to encourage use of SPC services, and local carers’ courses could be facilitated in both Punjabi and English.

❛Outreach clinics should be set up in local gurdwaras (temples) to encourage use of specialist palliative care services ...❜

Conclusion This study of the accounts of Sikh carers in south east England caring for patients at the end of life found domestic as well as professional barriers to accessing supportive care. The decision to adopt the caring role in this study appeared to be made mutually in all cases. Caring raised multidimensional financial concerns. Caring was viewed as having positive emotional effects, with carers expressing pride in their ability to fulfil this role, but it often affected the psychological health of the carer. In addition, most carers said that home care was only possible if the whole family was involved. There was a lack of awareness of SPC services, which implicated health professionals owing to the lack of referrals. Health professionals were criticised for a perceived lack of support, but some were praised for allowing the carers to follow their Sikh faith. Their faith appeared to give the carers strength to continue in their role. Culturally, there appeared to be heightened awareness of what other community members think of carers’ actions. This affects their decision to seek assistance in caring at home or in deciding to opt for care home application. The lack of awareness of services and lack of trust in health professionals indicates a need for health professionals to reach out to this population. However, an unwillingness to accept assistance may persist in some cases. I● JPN Acknowledgments The author would like to thank the Sikh community of Dartford and Gravesham for their enthusiasm for the study and their desire to improve care for others, her colleagues at EllenorLions Hospices who supported her through the initial research and drafts of this manuscript, and the staff of King’s College London who supervised her dissertation. Declaration of interests This work had no external sources of funding. The authors have no conflicts of interest to declare.

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Research



Ethical challenges when caring for dying children.

Nurses' professional autonomy and attitudes toward caring for dying patients in South-East Iran.

Informal Caregivers' Experiences and Needs When Caring for a Relative With Heart Failure: An Interview Study.

New kid on the block? Community nurses' experiences of caring for sick children at home.

Caring for Dying Patients in the Nursing Home: Voices From Frontline Nursing Home Staff.

Informal carers' experiences of caring for older adults at home: a phenomenological study.

Caring for the Dying Child and Family.

Experiences of ethical issues when caring for children with cancer.

Questions to consider when caring for a child with a high risk of dying before adulthood.

Driven to caring for cats at home.

Care of the dying: dying East, dying West.

Living through the end: The phenomenon of dying at home.

Molecular heterogeneity at the phenylalanine hydroxylase locus in the population of the south-west of England.

Caring for a preterm infant at home: a mother's perspective.

Lived experiences of nursing home residents in Korea.

Caring for people who are dying: priorities at the end of life.

Caring for those who die at home: the use and validation of 'Care Of the Dying Evaluation' (CODE) with bereaved relatives.

The long-term implications of caring for a ventilator-dependent child at home.

The lived experiences of being physically active when morbidly obese: A qualitative systematic review.

The lived experiences of being physically active when morbidly obese: A qualitative systematic review.

Death and caring for dying patients: exploring first-year nursing students' descriptive experiences.

Development of the Carers' Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study.

"Sometimes I've gone home feeling that my voice hasn't been heard": a focus group study exploring the views and experiences of health care assistants when caring for dying residents.

When dying at home is not an option: exploration of hostel staff views on palliative care for homeless people.