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Self-management support at the end of life: patients', carers' and professionals' perspectives on managing medicines

Self-management support at the end of life: patients', carers' and professionals' perspectives on managing medicines
Self-management support at the end of life: patients', carers' and professionals' perspectives on managing medicines
Background

Pain is a frequently reported symptom by patients approaching the end of life and well-established that patients and carers hold fears relating to opioids, and experience side effects related to their use. The management of medicines is intrinsic to achieving effective pain relief. The concept of self-management support whilst well characterised in the context of chronic illness has not been elaborated with respect to end of life care.

Aim

To identify patient, carer and professional views on the concept of self-management support at end of life, specifically in relation to analgesia and related medicines (for side-effect management) in order to describe, characterise and explain self-management support in this context.

Methodology & methods

Qualitative design, data collection methods involved focus groups and interviews. Topics included the meaning of self-management support in this context, roles and behaviours adopted to manage pain-related medicines, and factors that influence these. A largely deductive approach was used, involving verification and validation of key frameworks from the literature, but with capacity for new findings to emerge.

Setting

Participants were drawn from two different localities in England, one North, the other South. Interviews with patients and carers took place in their own homes and focus groups with healthcare professionals were held at local hospices.

Participants

38 individuals participated. 15 patients, in the last year of life, and 4 carers under the care of community-based specialist palliative care services and 19 specialist palliative care health professionals (predominantly community palliative care nurses).

Findings

The concept of self-management support had salience for patients, carers and specialist nurses alongside some unique features, specific to the end of life context. Specifically self-management was identified as an ever-changing process enacted along a continuum of behaviours fluctuating from full to no engagement. Disease progression, frequent changes in symptoms and side-effects, led to a complex web of roles and behaviours, varying day by day, if not hour by hour. Data confirmed previously proposed professional roles were enacted to support self-management. Furthermore, as patients, carers and clinical nurse specialists worked together to achieve effective pain management, they enacted and inter-acted in the roles of advocate, educator, facilitator, problem solver, communicator, goal setter, monitor and reporter.

Conclusions

The study has demonstrated what self-management support at end of life entails and how it is enacted in practice.

Analgesia, End of life, Opioids, Pain management, Palliative care, Self-management
0020-7489
45-54
Campling, N.
0e0410b0-a9cd-486d-a51f-20d80df04791
Richardson, A.
3db30680-aa47-43a5-b54d-62d10ece17b7
Mulvey, M.R.
0b6e7755-1ed9-45d1-a726-52422f0ef092
Bennett, M.I.
398a51e3-115b-4c4f-bbc2-678ee647edd6
Johnston, B.
63773cad-45c6-454a-ab49-233627762db2
Latter, S.
83f100a4-95ec-4f2e-99a5-186095de2f3b
Campling, N.
0e0410b0-a9cd-486d-a51f-20d80df04791
Richardson, A.
3db30680-aa47-43a5-b54d-62d10ece17b7
Mulvey, M.R.
0b6e7755-1ed9-45d1-a726-52422f0ef092
Bennett, M.I.
398a51e3-115b-4c4f-bbc2-678ee647edd6
Johnston, B.
63773cad-45c6-454a-ab49-233627762db2
Latter, S.
83f100a4-95ec-4f2e-99a5-186095de2f3b

Campling, N., Richardson, A., Mulvey, M.R., Bennett, M.I., Johnston, B. and Latter, S. (2017) Self-management support at the end of life: patients', carers' and professionals' perspectives on managing medicines. International Journal of Nursing Studies, 76, 45-54. (doi:10.1016/j.ijnurstu.2017.08.019).

Record type: Article

Abstract

Background

Pain is a frequently reported symptom by patients approaching the end of life and well-established that patients and carers hold fears relating to opioids, and experience side effects related to their use. The management of medicines is intrinsic to achieving effective pain relief. The concept of self-management support whilst well characterised in the context of chronic illness has not been elaborated with respect to end of life care.

Aim

To identify patient, carer and professional views on the concept of self-management support at end of life, specifically in relation to analgesia and related medicines (for side-effect management) in order to describe, characterise and explain self-management support in this context.

Methodology & methods

Qualitative design, data collection methods involved focus groups and interviews. Topics included the meaning of self-management support in this context, roles and behaviours adopted to manage pain-related medicines, and factors that influence these. A largely deductive approach was used, involving verification and validation of key frameworks from the literature, but with capacity for new findings to emerge.

Setting

Participants were drawn from two different localities in England, one North, the other South. Interviews with patients and carers took place in their own homes and focus groups with healthcare professionals were held at local hospices.

Participants

38 individuals participated. 15 patients, in the last year of life, and 4 carers under the care of community-based specialist palliative care services and 19 specialist palliative care health professionals (predominantly community palliative care nurses).

Findings

The concept of self-management support had salience for patients, carers and specialist nurses alongside some unique features, specific to the end of life context. Specifically self-management was identified as an ever-changing process enacted along a continuum of behaviours fluctuating from full to no engagement. Disease progression, frequent changes in symptoms and side-effects, led to a complex web of roles and behaviours, varying day by day, if not hour by hour. Data confirmed previously proposed professional roles were enacted to support self-management. Furthermore, as patients, carers and clinical nurse specialists worked together to achieve effective pain management, they enacted and inter-acted in the roles of advocate, educator, facilitator, problem solver, communicator, goal setter, monitor and reporter.

Conclusions

The study has demonstrated what self-management support at end of life entails and how it is enacted in practice.

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More information

Accepted/In Press date: 29 August 2017
e-pub ahead of print date: 6 September 2017
Published date: November 2017
Keywords: Analgesia, End of life, Opioids, Pain management, Palliative care, Self-management

Identifiers

Local EPrints ID: 414486
URI: https://eprints.soton.ac.uk/id/eprint/414486
ISSN: 0020-7489
PURE UUID: 7dd7bb33-e68c-4619-a8f2-96b8be067e23
ORCID for A. Richardson: ORCID iD orcid.org/0000-0003-3127-5755
ORCID for S. Latter: ORCID iD orcid.org/0000-0003-0973-0512

Catalogue record

Date deposited: 02 Oct 2017 16:30
Last modified: 15 Aug 2019 04:39

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