Palliative care strategy - lived experiences and public views: research studies - key findings summary

Appendix 1: Papers and reports

• Alcorn G, et al (2020) Care home residents who die in hospital: exploring factors, processes, and experiences. Age & Ageing 49(3): 468–480.
• Bandieri E et al (2024) Early palliative care perceptions by patients with cancer and primary caregivers: metaphorical language BMJ Supportive & Palliative Care Published Online First: 13 May 2024.
• Barrado-Martín Y et al (2022) Family caregivers' and professionals' experiences of supporting people living with dementia’s nutrition and hydration needs towards the end of life. Health Social Care Community; 30: 307–318.
• Black A, et al (2018) The ‘lived experience’ of palliative care patients in one acute hospital setting – a qualitative study. BMC Palliative Care 17, 91.
• Bowers B, et al. (2022) Simultaneously reassuring and unsettling: a longitudinal qualitative study of community anticipatory medication prescribing for older patients, Age and Ageing, Volume 51, Issue 12, December
• Bowers SP et al. (2022) End-of-life experiences of people living with socio-economic deprivation in the developed world: an integrative review. BMC Palliative Care 21, 193.
• Canny A, et al, (2023) Public perceptions of advance care planning (ACP) from an international perspective: a scoping review. BMC Palliative Care 22, 107.
• Carter G, et al. (2018). The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: A qualitative study. Journal of Advanced Nursing, 74(7), 1595–1604.
• Close H et al (2021) Qualitative investigation of patient and carer experiences of everyday legal needs towards end of life. BMC Palliative Care 20, 47 (2021).
• Collier A, et al (2023) 'The palliative care ambulance': A qualitative study of patient and caregiver perspectives of an ambulance service. Palliative Medicine. Jun;37(6):875-883.
• Dixon KC, et al. (2023) Traveller end of life care experiences and needs: thematic analysis BMJ Supportive & Palliative Care 0:1–10.
• Eisenmann Y, et al. (2020) Palliative Care in Advanced Dementia. Front Psychiatry. 2020 Jul 21; 11:699.
• Finucane AM, et al. (2015) Palliative and end-of-life care research in Scotland 2006–2015: a systematic scoping review. BMC Palliative Care 17, 19.
• Flemming K, et al (2020) The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review. Palliative medicine, 34(6), 708–730.
• Funk LM et al, (2022) Where would Canadians prefer to die? Variation by situational severity, support for family obligations, and age in a national study. BMC Palliative Care 21, 139.
• Gallagher J et al. (2022) Advance care planning in the community: factors of influence. BMJ Supportive & Palliative Care; 12:e345-e357
• Graham-Wisener L et al. (2022) Understanding public attitudes to death talk and advance care planning in Northern Ireland using health behaviour change theory: a qualitative study. BMC Public Health 22, 906.
• Green E et al (2018) Patients’ and carers’ perspectives of palliative care in general practice: A systematic review with narrative synthesis. Palliative Medicine; 8; 32(4):838-850.
• Hanna JR, et al. (2022). There’s something about admitting that you are lonely’ – prevalence, impact, and solutions to loneliness in terminal illness: An explanatory sequential multi-methods study. Palliative Medicine.
• Hansford L et al. (2022) How does housing affect end-of-life care and bereavement in low-income communities? A qualitative study of the experiences of bereaved individuals and service providers in the United Kingdom. Palliat Care Soc Pract. 2022 Jul 7:16
• Harrop E et al. (2016) “It still haunts me whether we did the right thing”: a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers. BMC Palliat Care 15, 92
• Hospice UK Report. “I just want to be me” Trans and Gender Diverse Communities’ Access to and Experiences of Palliative and End of Life Care, Hospice UK, 2023
• Islam Z et al (2023) Thinking ahead about medical treatments in advanced illness: a qualitative study of barriers and enablers in end-of-life care planning with patients and families from ethnically diverse backgrounds Health and Social Care Delivery Research, No. 11.07 Southampton (UK): National Institute for Health and Care Research.
• Jerwood J, et al. (2021) Lean in, don’t step back: The views and experiences of patients and carers with severe mental illness and incurable physical conditions on palliative and end of life care. Progress Palliative Care; 29(5):255–63.
• Johnson CV, et al. (2018) General practice palliative care: Patient and carer expectations, advance care plans and place of death - a systematic review. BMJ Supportive and Palliative Care. Published Online First: 25 July.
• Kendall M, et al. (2015) Different experiences and goals in different advanced diseases: comparing serial Interviews with patients with cancer, organ failure or frailty and their family and professional carers. Journal Pain Symptom Management: 50(2):216-24.
• Kendall M et al. (2018) Outcomes, experiences, and palliative care in major stroke: a multicentre, mixed-method, longitudinal study. Canadian Medical Association Journal. 2018; 190 (9): E238-E46.
• Khonsari S at al. (2022) Views of Care at End of Life: A Secondary Analysis of Online Feedback Using Care Opinion. Journal of Patient Experience 9.
• Kimbell B, et al. (2015) Managing uncertainty in advanced liver disease: a qualitative, multi-perspective, serial interview study. BMJ Open. 2015; 5(11):e009241.
• Kwok HHY et al, (2020) Experience and perspectives on palliative or end-of-life care of Chinese people and their families as immigrants to high-income countries: a systematic review and thematic synthesis. BMJ Global Health 2020;5: e003232
• Lloyd A, et al. (2016) Physical, social, psychological, and existential trajectories of loss and adaptation towards the end of life for older people living with frailty: a serial interview study. BMC Geriatrics; 16: 176.
• Marie Curie, Muslim Council of Britain, University College London, University of Leeds Report. (2023) Muslim Voices - The palliative care needs of British Muslims during the Covid-19 pandemic and beyond.
• Marie Curie report. (2021) Public attitudes to death and dying in the UK.
• Mason B, et al. (2022) Integrating lived experiences of out-of-hours health services for people with palliative and end-of-life care needs with national datasets for people dying in Scotland in 2016: A mixed methods, multi-stage design. Palliative Medicine 36(3): 478-488.
• Mason B et al (2016) ‘My body's falling apart.’ Understanding the experiences of patients with advanced multimorbidity to improve care: serial interviews with patients and carers. BMJ Supportive & Palliative Care 2016; 6:60-65.
• Masoud B et al. (2023) Patient awareness of palliative care: systematic review. BMJ Supportive & Palliative Care 13:136-142.
• McParland C et al. (2019). Palliative and end of life care in prisons: a mixed-methods rapid review of the literature from 2014-2018. BMJ Open, 9 (12), e033905.
• Moore KJ, et al (2017) Experiences of end of life amongst family carers of people with advanced dementia: longitudinal cohort study with mixed methods. BMC Geriatrics, 17(1), 135.
• Nair P et al (2022) Experiences of Carers and People with Dementia from Ethnic Minority Groups Managing Eating and Drinking at Home in the United Kingdom. Nutrients. 2022 Jun 9; 14(12):2395.
• Patra L et al. (2022) Cancer palliative care referral: patients’ and family caregivers’ perspectives – a systematic review. BMJ Support Palliat Care Published Online First: 03
• Pini S, et al (2021) Patient and professional experiences of palliative care referral discussions from cancer services: A qualitative interview study. Eur J Cancer Care, 30: e13340
• Pollock K et al. (2022) Patient and family caregiver perspectives of Advance Care Planning: qualitative findings from the ACTION cluster randomised controlled trial of an adapted respecting choices intervention, Mortality.
• Pollock K et al (2023) The ideal and the real: patient and bereaved family caregiver perspectives on the significance of place of death, Death Studies.
• Pun JKH et al. (2019) Chinese perspective on end-of-life communication: a systematic review. BMJ Supportive & Palliative Care. e2020; 0:1–8.
• Remawi BN, et al. (2023) The experiences of patients with advanced heart failure, family carers, and health professionals with palliative care services: a secondary reflexive thematic analysis of longitudinal interview data. BMC Palliative Care 22:115
• Rogers A, et al (2023) Parkinson’s disease and palliative care: a quality of care Delphi study. BMJ Supportive & Palliative Care; 13:255-262.
• Rosa WE et al (2022) Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review. Palliative Medicine; 37(4):460-474.
• Sampson C et al (2014) The practice of palliative care from the perspective of patients and carers BMJ Supportive & Palliative Care; 4:291–298.
• Selman LE, et al. (2019) The views and experiences of older people with conservatively managed renal failure: a qualitative study of communication, information and decision-making. BMC Nephrology 20, 38.
• Sepulveda JMG et al. (2022). What is a Good Death? A Choice Experiment on Care Indicators for Patients at End of Life. Journal Pain Symptom Manage; 63(4): 457-467.
• Shabnam J, et al. (2020). Palliative care for older South Asian migrants: A systematic review. Palliative and Supportive Care, 18(3), 346-358.
• Silies KT at al. (2022) Informal caregivers and advance care planning: systematic review with qualitative meta-synthesis. BMJ Supportive & Palliative Care 2022; 12:e472–e483.
• Stajduhar KI et al (2020) Caregiving at the margins: An ethnographic exploration of family caregivers’ experiences providing care for structurally vulnerable populations at the end-of-life. Palliative Medicine: 34(7):946-953.
• Stajduhar KI et al (2019) "Just too busy living in the moment and surviving": barriers to accessing health care for structurally vulnerable populations at end-of-life. BMC Palliative Care. Jan 26; 18(1).
• Swan S et al. (2022) Factors influencing adult carer support planning for unpaid caregiving at the end of life in Scotland: Qualitative insights from triangulated interviews and focus groups. Health & Social Care in the Community, 30, 1422– 1432.
• Triandafilidis Z et al. (2024) Improving end-of-life care for people with dementia: a mixed-methods study. BMC Palliat Care 23, 30.
• Velepucha-Iniguez J et al. (2022). Barriers to palliative care access in patients with intellectual disability: a scoping review. Journal Pain Symptom Management, 64(6), e347–e356.
• Wilson E et al (2022) Talking about death and dying: Findings from deliberative discussion groups with members of the public, Mortality.

Children, young people and parents

• Barrett, L M A. et al (2023) Understanding parent experiences of end-of-life care for children: a systematic review and qualitative evidence synthesis. Palliative Medicine: 37(2); 178–202.
• Bennett HE et al (2023) Paediatric advance care planning in life-limiting conditions: scoping review of parent experiences. BMJ Supportive Palliative Care; 13:161-173.
• Coombes, L et al. (2022). Achieving child-centred care for children and young people with life-limiting and life-threatening conditions: a qualitative interview study. European Journal of Paediatrics. 181, 3739–3752
• Fields D, et al (2023). What does 'good' palliative care look like for children and young people? A qualitative study of parents' experiences and perspectives. Palliative medicine, 37(3), 355–371.
• Jindal-Snape D. et al. (2019) Multiple and multidimensional life transitions in the context of life-limiting health conditions: longitudinal study focussing on perspectives of young adults, families, and professionals. BMC Palliative Care 18, 30.
• Lord S, et al, (2020) Assessment of bereaved caregiver experiences of advance care planning for children with medical complexity. JAMA Network Open. Jul 1; 3(7):e2010337.
• Taylor J et al (2020) Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review. Palliative Medicine. 34(6):731-775.
• Winger A et al (2020). Family experiences with palliative care for children at home: a systematic literature review. BMC Palliative Care 19, 165

Briefings and reports

• Every Story’s Ending: Proposals to improve people's experiences of living with serious illness, dying and bereavement in Scotland (2021)
• A road less lonely: moving forward with public health approaches to death, dying and bereavement in Scotland. (2018)
• Together for Short Lives – Guide to Children’s Palliative Care (2018)
• Enhancing neonatal care and family support in Scotland: a collaborative approach, CHAS & NHS Lothian (2019)
• Future transitions in palliative care: care across the life course for people living with life-limiting conditions. (2019)
• Report of the Lancet Commission on the Value of Death. (2022)
• The Lasting Impact of COVID-19 on Death, Dying and Bereavement (2023)
• Dying in Poverty – exploring poverty at the end of life in the UK (2022)
• Equality in hospice and end of life care: challenges and change (2021)
• Dying in the Cold – being homeless at the end of life (Scotland) (2021)
• Dying behind Bars - How can we better support people in prison at the end of life? (2021)
• A Place for Everyone - What stops people from choosing where they die? A review of the barriers to good end of life care facing diverse groups in the UK (2020)
• Getting it right for carers supporting someone at end of life (2018)
• Growing Up Grieving: The National Childhood Bereavement Project Final Report (2022)
• A better route through grief: Support for people facing grief across the UK (2021)
• Poverty at the end of life in the UK (2022)