I never knew that! Why do people from Black and Asian Minority Ethnic groups in Leicester access hospice services less than other groups? A discussion with community groups

Markham, Sheila

doi:10.21767/2049-5471.100016

Cited by 11 publications

(20 citation statements)

References 19 publications

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“…Lack of awareness of services, including hospice and palliative care, has been widely attributed as a cause of reduced use among ethnic minority groups. 84 It may be significant that none of the three Asian patients had been referred to SPC. Their experience highlights issues of communication and literacy, which affect more than individuals from ethnically and linguistically diverse groups.…”

Section: Diversity and Disadvantagementioning

confidence: 94%

“…82,83 Ethnic and cultural differences can influence health-seeking behaviour, illness experiences and access and use of services and treatment. 84 The UK continues to be more ethnically diverse, with ethnic minority groups accounting for one-fifth of the population in England and Wales in 2018. 85 Ethnic minority populations are also ageing and increasingly experiencing life-limiting illnesses, which has considerable implications for the provision of palliative and end-of-life care.…”

Section: Diversity and Disadvantagementioning

confidence: 99%

“…86 Reduced access results, in part, from lack of information about the services that are available. Markham et al's 84 study to explore the reasons for low levels of hospice use among ethnic minority groups found that many had very limited or erroneous knowledge of palliative care services. A further barrier was that many key terms, such as 'cancer', 'palliative care' and 'terminal care', did not have direct translations into languages such as Hindi and Gujarati.…”

Section: Diversity and Disadvantagementioning

confidence: 99%

“…advance care planning (ACP)] and decision-making could be problematic. 84 Little is known about how attitudes to medicines and medicines use, especially pain relief, are shaped by religious and cultural beliefs, or how HCPs respond to the consequences of these. [87][88][89] There has been very limited exploration of how people with disabilities manage medications, particularly at the end of life.…”

Section: Diversity and Disadvantagementioning

confidence: 99%

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Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study

Pollock

Wilson

Caswell

et al. 2021

Health Serv Deliv Res

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Background More effective ways of managing symptoms of chronic and terminal illness enable patients to be cared for, and to die, at home. This requires patients and family caregivers to manage complex medicines regimens, including powerful painkillers that can have serious side effects. Little is known about how patients and family caregivers manage the physical and emotional work of managing medicines in the home or the support that they receive from health-care professionals and services. Objective To investigate how patients with serious and terminal illness, their family caregivers and the health-care professionals manage complex medication regimens and routines of care in the domestic setting. Design A qualitative study involving (1) semistructured interviews and group discussions with 40 health-care professionals and 21 bereaved family caregivers, (2) 20 patient case studies with up to 4 months’ follow-up and (3) two end-of-project stakeholder workshops. Setting This took place in Nottinghamshire and Leicestershire, UK. Results As patients’ health deteriorated, family caregivers assumed the role of a care co-ordinator, undertaking the everyday work of organising and collecting prescriptions and storing and administering medicines around other care tasks and daily routines. Participants described the difficulties of navigating a complex and fragmented system and the need to remain vigilant about medicines prescribed, especially when changes were made by different professionals. Access to support, resilience and coping capacity are mediated through the resources available to patients, through the relationships that they have with people in their personal and professional networks, and, beyond that, through the wider connections – or disconnections – that these links have with others. Health-care professionals often lacked understanding of the practical and emotional challenges involved. All participants experienced difficulties in communication and organisation within a health-care system that they felt was complicated and poorly co-ordinated. Having a key health professional to support and guide patients and family caregivers through the system was important to a good experience of care. Limitations The study achieved diversity in the recruitment of patients, with different characteristics relating to the type of illness and socioeconomic circumstances. However, recruitment of participants from ethnically diverse and disadvantaged or hard-to-reach populations was particularly challenging, and we were unable to include as many participants from these groups as had been originally planned. Conclusions The study identified two key and inter-related areas in which patient and family caregiver experience of managing medicines at home in end-of-life care could be improved: (1) reducing work and responsibility for medicines management and (2) improving co-ordination and communication in health care. It is important to be mindful of the need for transparency and open discussion about the extent to which patients and family caregivers can and should be co-opted as proto-professionals in the technically and emotionally demanding tasks of managing medicines at the end of life. Future work Priorities for future research include investigating how allocated key professionals could integrate and co-ordinate care and optimise medicines management; the role of domiciliary home care workers in supporting medicines management in end-of-life care; patient and family perspectives and understanding of anticipatory prescribing and their preferences for involvement in decision-making; the experience of medicines management in terminal illness among minority, disadvantaged and hard-to-reach patient groups; and barriers to and facilitators of increased involvement of community pharmacists in palliative and end-of-life care. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 14. See the NIHR Journals Library website for further project information.

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Section: Diversity and Disadvantagementioning

confidence: 94%

Section: Diversity and Disadvantagementioning

confidence: 99%

Section: Diversity and Disadvantagementioning

confidence: 99%

Section: Diversity and Disadvantagementioning

confidence: 99%

See 2 more Smart Citations

Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study

Pollock

Wilson

Caswell

et al. 2021

Health Serv Deliv Res

View full text Add to dashboard Cite

show abstract

“…However, studies on place of death do not generate knowledge regarding the quality of the care provided towards the end of life . Moreover, the factors associated with place of death variations, that is individual characteristics, socio‐economic and disease‐related factors that have been previously reported , can only be fully understood by investigating the care from the perspective of the care receiver, if possible directly, but alternatively through the perspective of the care receivers' close family and friends.…”

Section: Introductionmentioning

confidence: 99%

Adaptation and validation of the VOICES (SF) questionnaire – for evaluation of end‐of‐life care in Sweden

O’Sullivan

Öhlén

Alvariza

et al. 2017

Scandinavian Caring Sciences

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The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations.

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Palliative Care Utilization Among Non-Western Migrants in Europe: A Systematic Review

Shabnam

Timm

Nielsen

et al. 2021

J Immigrant Minority Health

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I never knew that! Why do people from Black and Asian Minority Ethnic groups in Leicester access hospice services less than other groups? A discussion with community groups

Cited by 11 publications

References 19 publications

Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study

Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study

Adaptation and validation of the VOICES (SF) questionnaire – for evaluation of end‐of‐life care in Sweden

Palliative Care Utilization Among Non-Western Migrants in Europe: A Systematic Review

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