Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress 2023 EHA Congress 2023 ASCO Annual Meeting
Clinical Collections
Advances in Alzheimer’s

At a glance: The ONWARDS insulin icodec trials

A round-up of the ONWARDS phase 3 clinical trials evaluating the novel weekly insulin icodec in people with diabetes.
ADVANCED SEARCH
Log in
Top
BMC Palliative Care
Published in: BMC Palliative Care 1/2020

Open Access 01-12-2020 | Care | Research article

Co-construction of the family-focused support conversation: a participatory learning and action research study to implement support for family members whose relatives are being discharged for end-of-life care at home or in a nursing home

Authors: Sue Duke, Natasha Campling, Carl R. May, Susi Lund, Neil Lunt, Alison Richardson, Hospital to Home Co-researcher group

Published in: BMC Palliative Care | Issue 1/2020

Login to get access

Abstract

Background

Many people move in and out of hospital in the last few weeks of life. These care transitions can be distressing for family members because they signify the deterioration and impending death of their ill relative and forthcoming family bereavement. Whilst there is evidence about psychosocial support for family members providing end-of-life care at home, there is limited evidence about how this can be provided in acute hospitals during care transitions. Consequently, family members report a lack of support from hospital-based healthcare professionals.

Methods

The aim of the study was to implement research evidence for family support at the end-of-life in acute hospital care. Informed by Participatory Learning and Action Research and Normalization Process Theory (NPT) we co-designed a context-specific intervention, the Family-Focused Support Conversation, from a detailed review of research evidence. We undertook a pilot implementation in three acute hospital Trusts in England to assess the potential for the intervention to be used in clinical practice. Pilot implementation was undertaken during a three-month period by seven clinical co-researchers - nurses and occupational therapists in hospital specialist palliative care services. Implementation was evaluated through data comprised of reflective records of intervention delivery (n = 22), in-depth records of telephone implementation support meetings between research team members and co-researchers (n = 3), and in-depth evaluation meetings (n = 2). Data were qualitatively analysed using an NPT framework designed for intervention evaluation.

Results

Clinical co-researchers readily incorporated the Family-Focused Support Conversation into their everyday work. The intervention changed family support from being solely patient-focused, providing information about patient needs, to family-focused, identifying family concerns about the significance and implications of discharge and facilitating family-focused care. Co-researchers reported an increase in family members’ involvement in discharge decisions and end-of-life care planning.

Conclusion

The Family-Focused Support Conversation is a novel, evidenced-based and context specific intervention. Pilot implementation demonstrated the potential for the intervention to be used in acute hospitals to support family members during end-of-life care transitions. This subsequently informed a larger scale implementation study.

Trial registration

n/a.
Appendix
Available only for authorised users
Literature
1.
Van den Block L, Pivodic L, Pardon K, Donker D, Miccinesi G, Moreels S, Alonso TV, Deliens L, Onwuteaka-Philipsen B. Transitions between care settings in the final three months of life in four EU countries. Eur J Pub Health. 2015;25(4):569–75.CrossRef
2.
Payne S, Morby H. Supporting Family Carers: report on the evidence of how to work with and support family carers to inform the work of the commission into the future of hospice care. London: Help the Hospices; 2013.
3.
4.
5.
Carers UK. Evidence for the Carers Strategy. London: Carers UK; 2016.
6.
Hanratty B, Lowson E, Grande G, Payne S, Addington-Hall J, Valtorta N and Seymour J (2014) Transitions at the end of life for older adults – patient, carer and professional perspectives: a mixed-methods study Health Serv Deliv Res 2014; 2(17) NIHR https://​www.​ncbi.​nlm.​nih.​gov/​books/​NBK263541/​ accessed May 2019.
7.
Ewing G, Austin LM, Jones D, Grande G. Who cares for the carers at hospital discharge at the end of life? A qualitative study of current practice in discharge planning and the potential value of using the Carer Support Needs Assessment Tool (CSNAT) approach. Palliat Med. 2018;32(5):939–49.PubMedPubMedCentralCrossRef
8.
9.
10.
11.
12.
13.
Walczak A, Butow PN, Clayton JM. A systematic review for evidence of end of life communication interventions: who do they target, how are they structured and how do they work? Patient Educ Couns. 2016;99:3–16.PubMedCrossRef
14.
Lang D, Lim LC. Effects of art therapy for family caregivers of cancer patients: a systematic review. JBI Database System Rev Implement Rep. 2014;12(4):374–94.CrossRef
15.
16.
Kaltenbaugh DJ, Klem ML, Hu L, Turi E, Haines AJ, Lingler JH. Using web-based interventions to support caregivers of patients with cancer: A systematic review. Oncol Nurs Forum. 2015;42(2):156–64.PubMedCrossRef
17.
Northouse LL, Kapapodi M, Song L, Zhang L, Mood D. Interventions with family caregivers of cancer patients: meta-analysis of randomized controlled trials. CA Cancer J Clin. 2010;60(5):317–39.PubMedPubMedCentral
18.
19.
Waldron EA, Janke EA, Bechtel CF, Raminez M, Cohen A. A systematic review of psychosocial interventions to improve cancer carer quality of life. Psycho-oncology. 2013;22:1200–7.PubMedCrossRef
20.
Nevis I. Education interventions in end of life care: an evidence-based analysis. Ont Health Technol Assess Ser. 2014;14(27):1–30.PubMedPubMedCentral
21.
Harding R, List S, Epiphaniou E, Jones H. How can informal caregivers in cancer and palliative care be supported? An updated systematic literature review of interventions and their effectiveness. Palliat Med. 2012;26(1):7–22.PubMedCrossRef
22.
Chambers SK, Pinnock C, Lepore SJ, Hughes S, O’Donnell DL. A systematic review of psychosocial interventions for men with prostate cancer and their partners. Patient Educ Couns. 2011;85:e75–88.PubMedCrossRef
23.
Caress A-L, Chalmers K, Luker K. A narrative review of interventions to support family carers who provide physical care to family members with cancer. Int J Nurs Stud. 2009;46(11):1516–27.PubMedCrossRef
24.
Ussher JM, Perz J, Hawkins J, Brack M. Evaluating the psychosocial interventions for informal carers of cancer patients: a systematic review of the research literature. Health Psychol Rev. 2009;3(1):85–107.CrossRef
25.
Glasdam S, Timm H, Vittrup R. Support efforts for caregivers of chronically ill persons. Clin Nurs Res. 2009;19:233–65.CrossRef
26.
27.
Loi SM, Dow B, Ames D, Moore K, Hill K. Russell M and Lautenschlager N physical activity in caregivers: what are the psychological benefits? Arch Gerontol Geriatr. 2014;59(2):204–10.PubMedCrossRef
28.
29.
Hudson P, Payne S. Family caregivers and palliative care: current status and agenda for the future. J Palliat Med. 2011;14(7):864–9.PubMedCrossRef
30.
Brimblecombe N, Ferandez J-L, Knapp M, Redhill A, Whittenberg R. Review of the international evidence on support for unpaid carers. J Long Term Care. 2018:25–40.
31.
Ferrell B, Wittenberg E. A review of caregiving intervention trials in oncology. CA A Cancer J Clin. 2017;67:318–25.CrossRef
32.
Ugalde A, Gaskin CJ, Rankin NM, Schofield P, Boltong A, Aranda S, Chamber S, Krishnasamy M, Livingston P. A systematic review of caregiver interventions: Appraising the potential for implementation of evidence into practice. Psycho-Oncology. 2019;28:687–701.PubMedPubMedCentralCrossRef
33.
34.
35.
de Brùn T, O’Reilly T, de Brùn M, O’Donnell CA. Learning from doing: The case for combining normalisation process theory and participatory action and learning research methodology for primary healthcare implementation research. BMC Health Serv Res. 2016;16(346). https://​doi.​org/​10.​1186/​s12913-016-1587-z.
36.
37.
Oliviere D, Hargreaves R, Monroe B. Good Practices in Palliative Care A Psychosocial Perspective. London: Routledge; 1998.
38.
39.
Corry M, Clarke M, While A, Lalor J. Developing complex interventions for nursing: A critical review of key guidelines. J Clin Nurs. 2013;22(17–18):2366–86.PubMedCrossRef
40.
41.
Boal A. Theater of the Oppressed. London: Pluto Press; 1979.
42.
Quinlan E. New action research techniques: Using participatory theatre with health care workers. Action Res. 2010;8(2):117–33.CrossRef
43.
Duke S, Anstey S, Latter S. Using ethnodrama to create an interactional intervention as part of modelling a complex intervention in a phase I-II research study. In: 12th International Conference on Communication in Healthcare Amsterdam; 2014. 30/9/14.
44.
Duke S, Bailey C. In: Payne S, Seymore J, Ingleton C, editors. Communication in Textbook of Palliative Nursing. Maidenhead: OUP Press; 2008. p. 121–45.
45.
Ritchie J, Lewis J. Qualitative research practice. In: A Guide for social science students and researchers. London: Sage; 2003.
46.
Murray E, Treewick S, Pope C, MacFarlane A, Ballini L, Dowrick C, Finch T, Kennedy A, Mair F, O’Donnell C, Ong BN, Rogers A, May C. Normalisation Process Theory: a framework for developing, testing and implementing complex interventions. BMC Med. 2010;8(64). https://​doi.​org/​10.​1186/​1741-7015-8-63.
47.
Manne S, Babb J, Pinover W, Horwitz E, Ebbert J. Psychoeducational group intervention for wives of men with prostate cancer. Psycho-oncology. 2004;13:37–46.PubMedCrossRef
48.
Hudson P, Aranda S, Hayman-White K. A psych-educational intervention for family caregivers of patients receiving palliative care: A randomised clinical trial. J Pain Symptom Manag. 2005;30(4):329–41.CrossRef
49.
Northouse L, Kershaw T, Mood D, Schafenacker A. Effects of a family intervention on the quality of life of women with recurrent breast cancer and their family caregivers. Psycho-oncology. 2005;14:478–91.PubMedCrossRef
50.
Northouse L, Mood D, Schafenacker A, Montie J, Sandler H, Foreman J, Hussain M, Pienta K, Smith D, Kershaw T. Randomised clinical trial of a family intervention for prostate cancer patients and their spouses. Cancer. 2007;110(12):2809–18.PubMedCrossRef
51.
McMillan S, Small B, Weitzner M, Schonwetter R, Tittle M, Moody L, Haley W. Impact of coping skills intervention with caregivers of hospice patients with cancer. A randomised clinical trial. Cancer. 2006;106(1):214–22.PubMedCrossRef
52.
McMillan S, Small B. Using the COPE intervention for family caregivers to improve symptoms of hospice homecare patients: a clinical trial. Oncol Nurs Forum. 2007;34(2):313–21.PubMedCrossRef
53.
Walsh K, Jones L, Tookman A, Mason C, McLoughlin J, Blizard R, King M. Reducing emotional distress in people caring for patients receiving specialist palliative care. J Psychiatry. 2007;190:142–7.CrossRef
54.
55.
Antonovsky A, Sourani T. Family sense of coherence and family adaptation. J Marriage Fam. 1988;50(1):79–92.CrossRef
56.
Mishel MH, Braden CJ. Finding meaning: antecedents of uncertainty in illness. Nurs Res. 1988;37(2):98–103.PubMedCrossRef
57.
Folkman S, Moskowitz JT. Positive affect and meaning focused coping during significant psychological stress Chapter 12. In: Hewstone M, Schut H, de Wit J, van den Boss K, Stroebe M, editors. The Scope of Social Psychology. East Sussex: Psychology Press; 2007. p. 193–208.
58.
Stensletten K, Bruvik F, Espehaug B, Drageset J. Burden of care, social support, and sense of coherence in elderly caregivers living with symptoms of dementia. Dementia. 2016;15(6):1422–35.PubMedCrossRef
59.
Pottier F, Degryse J-M, Henrard S, Aubouy G, de Saint-Hubert M. A high sense of coherence protects the burden of caregiving to older spousal caregivers. Arch Gerontol Geriatr. 2018;75:76–82.CrossRef
60.
Möllerberg M-L, Arestedt K, Swahnberg K, Benzein E, Sandgren A. Family sense of coherence and its association with hope, anxiety and symptoms of depression in persons with cancer in palliative phase and their family members: A cross-sectional study. Palliat Med. 2019;33(10):1310–8.PubMedCrossRef
61.
62.
63.
Grande G, Stajduhar K, Aoun S, Toye C, Funk L, Addington-Hall J, Payne S, Todd C. Supporting lay carers in end of life care: current gaps and future priorities. Palliat Med. 2009;23:339–44.PubMedCrossRef
64.
65.
Hoffman T, Glasziou P, Boutron I, Ruairidh MPerera R, Moher D, Barbour V, Johnston M, Lamb S, Dixon-Woods M, McCulloch P, Wyatt J, Chang A-W, Michie S. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. Br Med J. 2014;348:g1687. https://​doi.​org/​10.​1136/​bmj.​g1687.CrossRef
Metadata
Title
Co-construction of the family-focused support conversation: a participatory learning and action research study to implement support for family members whose relatives are being discharged for end-of-life care at home or in a nursing home
Authors
Sue Duke
Natasha Campling
Carl R. May
Susi Lund
Neil Lunt
Alison Richardson
Hospital to Home Co-researcher group
Publication date
01-12-2020
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2020
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-020-00647-5

Other articles of this Issue 1/2020

BMC Palliative Care 1/2020 Go to the issue

Research article

Constructing stability - a classic grounded theory of next-of-kin in palliative cancer care

Research article

Attitudes of registered nurses about the end – of – life care in multi-profile hospitals: a cross sectional survey

Research article

Nothing to lose: a grounded theory study of patients’ and healthcare professionals’ perspectives of being involved in the consent process for oncology trials with non-curative intent

Research article

Continuous subcutaneous infusion for pain control in dying patients: experiences from a tertiary palliative care center

Research article

General practitioners’ perceptions of compassionate communities: a qualitative study

Research article

Measuring quality of life in life-threatening illness – content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers