EXPERTS II - How are patient and caregiver participation in health and social care shaped by experienced burden of treatment and social inequalities? Protocol for a qualitative synthesis.

Carl R May; Carolyn A. Chew-Graham; Katie I Gallacher; Katja C Gravenhorst; Frances S Mair; Ellen Nolte; Alison Richardson

doi:10.3310/nihropenres.13411.1

journal article Open Access Jun 16, 2023

EXPERTS II - How are patient and caregiver participation in health and social care shaped by experienced burden of treatment and social inequalities? Protocol for a qualitative synthesis.

Carl R May

Carolyn A. Chew-Graham Katie I Gallacher Katja C Gravenhorst

Frances S Mair

Ellen Nolte

Alison Richardson

NIHR Open Research Vol. 3 pp. 31 · National Institute for Health and Care Research

View at Publisher Save 10.3310/nihropenres.13411.1

Abstract

Background The workload health and social care service users and caregivers take on, and their capacity to do this work is important. It may play a key part in shaping the implementation of innovations in health service delivery and organisation; the utilisation and satisfaction with services; and the outcomes of care. Previous research has often focused on experiences of a narrow range of long-term conditions, and on factors that shape adherence to self-care regimes. Aims With the aim of deriving policy and practice implications for service redesign, this evidence synthesis will extend our understanding of service user and caregiver workload and capacity by comparing how they are revealed in qualitative studies of lived experience of three kinds of illness trajectories: long-term conditions associated with significant disability (Parkinson’s disease, schizophrenia); serious relapsing remitting disease (Inflammatory Bowel Disease, bipolar disorder); and rapidly progressing acute disease (brain cancer, early onset dementia). Methods We will review and synthesise qualitative studies of lived experience of participation in health and social care that are shaped by interactions between experienced treatment burdens, social inequalities and illness trajectories. The review will involve: 1. Construction of a theory-informed coding manual; systematic search of bibliographic databases to identify, screen and quality assess full-text papers. 2. Analysis of papers using manual coding techniques, and text mining software; construction of taxonomies of service user and caregiver work and capacity. 3. Designing a model of core components and identifying common factors across conditions, trajectories, and contexts. 4. Work with practitioners, and a Patient and Public Involvement (PPI) group, to explore the validity of the models produced; to develop workload reduction strategies; and to consider person-centred service design. Dissemination We will promote workload reduction models to support service users and caregivers and produce policy briefs and peer-reviewed publications for practitioners, policy-makers, and researchers.

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References

55

[1]

C May "Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness." BMC Health Serv Res. (2014) 10.1186/1472-6963-14-281

[2]

"Framework 15: Health Education England Strategic Framework 2014-2029." (2014)

[3]

C Gately "Re-thinking the relationship between long-term condition self-management education and the utilisation of health services." Soc Sci Med. (2007) 10.1016/j.socscimed.2007.04.018

[4]

K Charmaz "Good Days, Bad Days: The Self in Chronic Illness." (2006)

[5]

B Glaser "Status passage." (1971)

[6]

Chronic illness as biographical disruption

Michael Bury

Sociology of Health & Illness 1982 10.1111/1467-9566.ep11339939

[7]

I Vassilev "The influence of social networks on self-management support: a metasynthesis." BMC Public Health. (2014) 10.1186/1471-2458-14-719

[8]

A Strauss "The Social Organisation of Medical Work." (1985)

[9]

F Mair "Thinking about the burden of treatment." BMJ. (2014) 10.1136/bmj.g6680

[10]

Understanding Patients' Experiences of Treatment Burden in Chronic Heart Failure Using Normalization Process Theory

K. Gallacher, C. R. May, V. M. Montori et al.

The Annals of Family Medicine 2011 10.1370/afm.1249

[11]

K Hunt "Managing expectations: cognitive authority and experienced control in complex healthcare processes." BMC Health Serv Res. (2017) 10.1186/s12913-017-2366-1

[12]

C Campbell "Social capital, social movements and global public health: Fighting for health-enabling contexts in marginalised settings." Soc Sci Med. (2020) 10.1016/j.socscimed.2019.02.004

[13]

M McCubbin "Pathways to health, illness and well-being: From the perspective of power and control." J Community Appl Soc. (2001) 10.1002/casp.622

[14]

I Vassilev "The role of collective efficacy in long-term condition management: A metasynthesis." Health Soc Care Community. (2019) 10.1111/hsc.12779

[15]

N Shippee "Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice." J Clin Epidemiol. (2012) 10.1016/j.jclinepi.2012.05.005

[16]

D Weiss "Innovative technologies and social inequalities in health: A scoping review of the literature." PLoS One. (2018) 10.1371/journal.pone.0195447

[17]

J Corbin "Managing chronic illness at home: Three lines of work." Qual Sociol. (1985) 10.1007/bf00989485

[18]

K Boehmer "Does the chronic care model meet the emerging needs of people living with multimorbidity? A systematic review and thematic synthesis." PLoS One. (2018) 10.1371/journal.pone.0190852

[19]

K Barnett "Epidemiology of multimorbidity and implications for health care, research, and medical education: a cross-sectional study." Lancet. (2012) 10.1016/s0140-6736(12)60240-2

[20]

C May "Chronic illness and intractability: professional-patient interactions in primary care." Chronic Illn. (2005) 10.1177/17423953050010011201

[21]

J Cornwell "Hard-Earned Lives: Accounts of Health and Illness from East London." (1984)

[22]

M Blaxter "Health and lifestyles." (1990) 10.4324/9780203393000

[23]

L Keaver "Future trends in social inequalities in obesity in England, Wales and Scotland." J Public Health (Oxf). (2020) 10.1093/pubmed/fdz022

[24]

S Lago "Socioeconomic status, health inequalities and non-communicable diseases: a systematic review." Z Gesundh Wiss. (2018) 10.1007/s10389-017-0850-z

[25]

E Boger "Self-management and self-management support outcomes: A systematic review and mixed research synthesis of stakeholder views." PLoS One. (2015) 10.1371/journal.pone.0130990

[26]

C May "Towards a wireless patient: chronic illness, scarce care and technological innovation in the United Kingdom." Soc Sci Med. (2005) 10.1016/j.socscimed.2005.03.008

[27]

J Newbould "Lay-led self-management in chronic illness: a review of the evidence." Chronic Illn. (2006) 10.1177/17423953060020040401

[28]

S Demain "Living With, Managing and Minimising Treatment Burden in Long Term Conditions: A Systematic Review of Qualitative Research." PLoS One. (2015) 10.1371/journal.pone.0125457

[29]

A Sav "Consumer health organisations for chronic conditions: why do some people access them and others don't?" Prim Health Care Res Dev. (2014) 10.1017/s1463423614000036

[30]

A Sav "The ideal healthcare: priorities of people with chronic conditions and their carers." BMC Health Serv Res. (2015) 10.1186/s12913-015-1215-3

[31]

A Sav "Burden of treatment for chronic illness: a concept analysis and review of the literature." Health Expect. (2013) 10.1111/hex.12046

[32]

C May "Experiences of long-term life-limiting conditions among patients and carers: what can we learn from a meta-review of systematic reviews of qualitative studies of chronic heart failure, chronic obstructive pulmonary disease and chronic kidney disease?" BMJ Open. (2016) 10.1136/bmjopen-2016-011694

[33]

C May "Retheorizing the clinical encounter: Normalization processes and the corporate ecologies of care." Assaults on the lifeworld: new directions in the sociology of chronic and disabling conditions. (2010) 10.1057/9780230297432_7

[34]

C May "We need minimally disruptive medicine." BMJ. (2009) 10.1136/bmj.b2803

[35]

K Boehmer "Patient capacity and constraints in the experience of chronic disease: a qualitative systematic review and thematic synthesis." BMC Fam Pract. (2016) 10.1186/s12875-016-0525-9

[36]

B Jani "Identifying treatment burden as an important concept for end of life care in those with advanced heart failure." Curr Opin Support Palliat Care. (2013) 10.1097/spc.0b013e32835c071f

[37]

K Gallacher "Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research." PLoS Med. (2013) 10.1371/journal.pmed.1001473

[38]

K Lippiett "Patients and informal caregivers' experiences of burden of treatment in lung cancer and chronic obstructive pulmonary disease (COPD): a systematic review and synthesis of qualitative research." BMJ Open. (2019) 10.1136/bmjopen-2017-020515

[39]

C May "EXPERTS 1-experiences of long-term life-limiting conditions among patients and carers: protocol for a qualitative meta-synthesis and conceptual modelling study." BMJ Open. (2015) 10.1136/bmjopen-2014-007372

[40]

T Rapley "How to study conversations, discourse and documents." (2006)

[41]

J Corbin "Unending Work and Care: Managing Chronic Illness at Home." (1988)

[42]

K Charmaz "The Body, Identity, and Self: Adapting To Impairment." Sociol Q. (1995) 10.1111/j.1533-8525.1995.tb00459.x

[43]

C May "Development of a theory of implementation and integration: Normalization Process Theory." Implement Sci. (2009) 10.1186/1748-5908-4-29

[44]

C May "In: Handbook of the Sociology of Health, Illness, and Healing: A Blueprint for the 21st Century." (2010)

[45]

L Doyal "The political economy of health." (1979)

[46]

M Granovetter "The strength of weak ties." American Journal of Sociology. (1973) 10.1086/225469

[47]

N Lin "Social capital: a theory of social structure and action." (2001) 10.1017/cbo9780511815447

[48]

"Programm, C. A. S." (2018)

[49]

P Stockwell "Use of an automatic content analysis tool: A technique for seeing both local and global scope." Int J Hum-Comput St. (2009) 10.1016/j.ijhcs.2008.12.001

[50]

J Thompson "A systematic method for search term selection in systematic reviews." Res Synth Methods. (2014) 10.1002/jrsm.1096

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Published: Jun 16, 2023
Vol/Issue: 3
Pages: 31
License: View

Authors

C

Carl R May

C

Carolyn A. Chew-Graham

Director, Health and Healthcare Policy, RAND Europe, UK

A

Alison Richardson

School of Health Sciences, University of Southampton, Southampton, Hampshire, UK; University Hospital Southampton NHS Foundation Trust, Southampton, UK

Cite This Article

Carl R May, Carolyn A. Chew-Graham, Katie I Gallacher, et al. (2023). EXPERTS II - How are patient and caregiver participation in health and social care shaped by experienced burden of treatment and social inequalities? Protocol for a qualitative synthesis.. NIHR Open Research, 3, 31. https://doi.org/10.3310/nihropenres.13411.1

EXPERTS II - How are patient and caregiver participation in health and social care shaped by experienced burden of treatment and social inequalities? Protocol for a qualitative synthesis.

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