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Living with, managing and minimising treatment burden in long term conditions: a systematic review of qualitative research

Living with, managing and minimising treatment burden in long term conditions: a systematic review of qualitative research
Living with, managing and minimising treatment burden in long term conditions: a systematic review of qualitative research
Background: ‘Treatment burden’, defined as both the workload and impact of treatment regimens on function and well-being, has been associated with poor adherence and unfavourable outcomes. Previous research focused on treatment workload but our understanding of treatment impact is limited. This research aimed to systematically review qualitative research to identify: 1) what are the treatment generated disruptions experienced by patients across all chronic conditions and treatments? 2) what strategies do patients employ to minimise these treatment generated disruptions?

Methods and findings: the search strategy centred on: treatment burden and qualitative methods. Medline, CINAHL, Embase, and PsychINFO were searched electronically from inception to Dec 2013. No language limitations were set. Teams of two reviewers independently conducted paper screening, data extraction, and data analysis. Data were analysed using framework synthesis informed by Cumulative Complexity Model. Eleven papers reporting data from 294 patients, across a range of conditions, age groups and nationalities were included. Treatment burdens were experienced as a series of disruptions: biographical disruptions involved loss of freedom and independence, restriction of meaningful activities, negative emotions and stigma; relational disruptions included strained family and social relationships and feeling isolated; and, biological disruptions involved physical side-effects. Patients employed “adaptive treatment work” and “rationalised non-adherence” to minimise treatment disruptions. Rationalised non-adherence was sanctioned by health professionals at end of life; at other times it was a “secret-act” which generated feelings of guilt and impacted on family and clinical relationships.

Conclusions: treatments generate negative emotions and physical side effects, strain relationships and affect identity. Patients minimise these disruptions through additional adaptive work and/or by non-adherence. This affects physical outcomes and care relationships. There is a need for clinicians to engage with patients in honest conversations about treatment disruptions and the ‘adhere-ability’ of recommended regimens. Patient-centred practice requires management plans which optimise outcomes and minimise disruptions
1932-6203
Demain, Sara
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Gonçalves, Ana-Carolina
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Areia, Carlos
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Oliveira, Rúben
dff67a67-2560-446e-8739-3b8fd917afe9
Marcos, Ana Jorge
5524ee67-830d-4061-ac45-76ef5d43cdb2
Marques, Alda
adcfe8d5-518a-4079-902a-130ebc68d338
Parmar, Ranj
8d058f92-40b0-4b74-a138-a52923630fc3
Hunt, Katherine
5eab8123-1157-4d4e-a7d9-5fd817218c6e
Demain, Sara
09b1124d-750a-4eb1-90c7-91f5f222fc31
Gonçalves, Ana-Carolina
631e4efb-22a3-491e-9da3-c629538701e9
Areia, Carlos
18bf079a-2563-4bb2-a13b-8b8a1ff8dafc
Oliveira, Rúben
dff67a67-2560-446e-8739-3b8fd917afe9
Marcos, Ana Jorge
5524ee67-830d-4061-ac45-76ef5d43cdb2
Marques, Alda
adcfe8d5-518a-4079-902a-130ebc68d338
Parmar, Ranj
8d058f92-40b0-4b74-a138-a52923630fc3
Hunt, Katherine
5eab8123-1157-4d4e-a7d9-5fd817218c6e

Demain, Sara, Gonçalves, Ana-Carolina, Areia, Carlos, Oliveira, Rúben, Marcos, Ana Jorge, Marques, Alda, Parmar, Ranj and Hunt, Katherine (2015) Living with, managing and minimising treatment burden in long term conditions: a systematic review of qualitative research. PLoS ONE, 10 (5), [e0125457]. (doi:10.1371/journal.pone.0125457).

Record type: Article

Abstract

Background: ‘Treatment burden’, defined as both the workload and impact of treatment regimens on function and well-being, has been associated with poor adherence and unfavourable outcomes. Previous research focused on treatment workload but our understanding of treatment impact is limited. This research aimed to systematically review qualitative research to identify: 1) what are the treatment generated disruptions experienced by patients across all chronic conditions and treatments? 2) what strategies do patients employ to minimise these treatment generated disruptions?

Methods and findings: the search strategy centred on: treatment burden and qualitative methods. Medline, CINAHL, Embase, and PsychINFO were searched electronically from inception to Dec 2013. No language limitations were set. Teams of two reviewers independently conducted paper screening, data extraction, and data analysis. Data were analysed using framework synthesis informed by Cumulative Complexity Model. Eleven papers reporting data from 294 patients, across a range of conditions, age groups and nationalities were included. Treatment burdens were experienced as a series of disruptions: biographical disruptions involved loss of freedom and independence, restriction of meaningful activities, negative emotions and stigma; relational disruptions included strained family and social relationships and feeling isolated; and, biological disruptions involved physical side-effects. Patients employed “adaptive treatment work” and “rationalised non-adherence” to minimise treatment disruptions. Rationalised non-adherence was sanctioned by health professionals at end of life; at other times it was a “secret-act” which generated feelings of guilt and impacted on family and clinical relationships.

Conclusions: treatments generate negative emotions and physical side effects, strain relationships and affect identity. Patients minimise these disruptions through additional adaptive work and/or by non-adherence. This affects physical outcomes and care relationships. There is a need for clinicians to engage with patients in honest conversations about treatment disruptions and the ‘adhere-ability’ of recommended regimens. Patient-centred practice requires management plans which optimise outcomes and minimise disruptions

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Accepted/In Press date: 16 March 2015
e-pub ahead of print date: 29 May 2015
Published date: 29 May 2015
Organisations: Faculty of Health Sciences

Identifiers

Local EPrints ID: 380537
URI: http://eprints.soton.ac.uk/id/eprint/380537
ISSN: 1932-6203
PURE UUID: ec16151f-e3ad-4efd-aedf-27fff10998ea
ORCID for Katherine Hunt: ORCID iD orcid.org/0000-0002-6173-7319

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Date deposited: 11 Sep 2015 14:16
Last modified: 25 Jun 2024 01:43

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Contributors

Author: Sara Demain
Author: Ana-Carolina Gonçalves
Author: Carlos Areia
Author: Rúben Oliveira
Author: Ana Jorge Marcos
Author: Alda Marques
Author: Ranj Parmar
Author: Katherine Hunt ORCID iD

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