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

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.

SUBMITTER: Demain S

PROVIDER: S-EPMC4449201 | biostudies-literature | 2015

REPOSITORIES: biostudies-literature

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

Demain Sara S Gonçalves Ana-Carolina AC Areia Carlos C Oliveira Rúben R Marcos Ana Jorge AJ Marques Alda A Parmar Ranj R Hunt Katherine K

PloS one 20150529 5

<h4>Background</h4>'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) wh ...[more]

PMID: 26024379

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Project description:BackgroundThe risk of depression is increased in people with long term conditions (LTCs) and is associated with poorer patient outcomes for both the depressive illness and the LTC, but often remains undetected and poorly managed. The aim of this study was to identify and explore barriers to detecting and managing depression in primary care in people with two exemplar LTCs: diabetes and coronary heart disease (CHD).MethodsQualitative in-depth interviews were conducted with 19 healthcare professionals drawn predominately from primary care, along with 7 service users and 3 carers (n = 29). One focus group was then held with a set of 6 healthcare professionals and a set of 7 service users and 1 carer (n = 14). Interviews and the focus group were digitally recorded, transcribed verbatim, and analysed independently. The two data sets were then inspected for commonalities using a constant comparative method, leading to a final thematic framework used in this paper.ResultsBarriers to detecting and managing depression in people with LTCs in primary care exist: i) when practitioners in partnership with patients conceptualise depression as a common and understandable response to the losses associated with LTCs - depression in the presence of LTCs is normalised, militating against its recognition and treatment; ii) where highly performanced managed consultations under the terms of the Quality and Outcomes Framework encourage reductionist approaches to case-finding in people with CHD and diabetes, and iii) where there is uncertainty among practitioners about how to negotiate labels for depression in people with LTCs in ways that might facilitate shared understanding and future management.ConclusionDepression was often normalised in the presence of LTCs, obviating rather than facilitating further assessment and management. Furthermore, structural constraints imposed by the QOF encouraged reductionist approaches to case-finding for depression in consultations for CHD and diabetes. Future work might focus on how interventions that draw on the principles of the chronic care model, such as collaborative care, could support primary care practitioners to better recognise and manage depression in patients with LTCs.

Project description:BackgroundMultiple long-term conditions-the co-existence of two or more chronic health conditions in an individual-present an increasing challenge to populations and healthcare systems worldwide. This challenge is keenly felt in hospital settings where care is oriented around specialist provision for single conditions. The aim of this scoping review was to identify and summarise published qualitative research on the experiences of hospital care for people living with multiple long-term conditions, their informal caregivers and healthcare professionals.MethodsWe undertook a scoping review, following established guidelines, of primary qualitative research on experiences of hospital care for people living with multiple long-term conditions published in peer-reviewed journals between Jan 2010 and June 2022. We conducted systematic electronic searches of MEDLINE, CINAHL, PsycInfo, Proquest Social Science Premium, Web of Science, Scopus and Embase, supplemented by citation tracking. Studies were selected for inclusion by two reviewers using an independent screening process. Data extraction included study populations, study design, findings and author conclusions. We took a narrative approach to reporting the findings.ResultsOf 8002 titles and abstracts screened, 54 papers reporting findings from 41 studies conducted in 14 countries were identified as eligible for inclusion. The perspectives of people living with multiple long-term conditions (21 studies), informal caregivers (n = 13) and healthcare professionals (n = 27) were represented, with 15 studies reporting experiences of more than one group. Findings included poor service integration and lack of person-centred care, limited confidence of healthcare professionals to treat conditions outside of their specialty, and time pressures leading to hurried care transitions. Few studies explored inequities in experiences of hospital care.ConclusionsQualitative research evidence on the experiences of hospital care for multiple long-term conditions illuminates a tension between the desire to provide and receive person-centred care and time pressures inherent within a target-driven system focussed on increasing specialisation, reduced inpatient provision and accelerated journeys through the care system. A move towards more integrated models of care may enable the needs of people living with multiple long-term conditions to be better met. Future research should address how social circumstances shape experiences of care.

Project description:ObjectiveTo systematically review and synthesise qualitative research exploring parents/carers' experiences of seeking online information and support for long-term physical childhood conditions.DesignSystematic review and thematic synthesis of qualitative research.Data sourcesMedline, CINAHL, Embase, PsycINFO and the International Bibliography of the Social Sciences were searched from inception to September 2019. We used thematic synthesis to analyse findings.Eligibility criteriaPrimary research papers presenting qualitative data collection and analysis, focusing on parents/carers' experiences of seeking health information and support from online resources for long-term physical childhood health conditions. No language restrictions were placed.Results23 studies from seven countries met inclusion criteria and were included in the synthesis. Included studies presented data collected through interviews/focus groups with 559 parents/carers; free-text surveys and essays with 26 parents/carers and 2407 messages from online support groups. Parents/carers developed a variety of strategies to obtain information and support online, based on personal preferences, appraisal of trustworthiness, perceived needs and previous experiences online. Many parents sought the benefits of online information and support, which included reassurance and validation from online communities, and feeling they had greater knowledge about their children's conditions. Some concerns and perceived risks were discussed, which often stemmed from prior unsatisfactory experiences of seeking information and support online, consultations with health professionals and seeing distressing stories online.ConclusionMost parents/carers were successful in obtaining information and support online. Many continued to share experiences with other parents/carers online. The need for information was particularly apparent early after diagnosis of the condition, whereas the need for peer support continued. The potential concerns and perceived risks with information and support online were especially apparent among parents/carers of children with life-limiting long-term conditions. Findings may be useful for health professionals to facilitate discussions regarding use of online resources, and researchers designing online health resources for parents/carers.Prospero registration numberCRD42018096009.

Project description:IntroductionApproximately 20% of people with a long-term condition (LTC) experience depressive symptoms (subthreshold depression [SUBD]). People with SUBD experience depressive symptoms that do not meet the diagnostic criteria for major depressive disorder. However, there is currently no targeted psychological support for people with LTCs also experiencing SUBD. Online peer support is accessible, inexpensive and scalable, and might offer a way of bridging the gap in psychosocial care for LTC patients. This article explores the psychosocial needs of people living with LTCs and investigates their perspectives on online peer support interventions to inform their future design.MethodsThrough a co-produced participatory approach, online focus groups were completed with people with lived experience of LTCs. Focus groups were audio recorded and transcribed verbatim. Reflexive thematic analysis (TA) was conducted adopting a critical-realist approach and an inductive analysis methodology that sought to follow participants' priorities and concerns.ResultsTen people with a range of LTCs participated across three online focus groups, lasting an average of 95 (±10.1) min. The mean age was 57 (±11.4) years and 60% of participants identified as female. The three key emerging themes were: (1) relationship between self and outside world; (2) past experiences of peer support; and (3) philosophy and vision of peer support. Adults living with LTCs shared their past experiences of peer support and explored their perspectives on how future online peer support platforms may support their psychosocial needs.ConclusionDespite the negative impact(s) of having a long-term physical health condition on mental health, physical and mental healthcare are often treated as separate entities. The need for an integrated approach for people with LTCs was clear. Implementation of online peer support to bridge this gap was supported, but there was a clear consensus that these interventions need to be co-produced and carefully designed to ensure they feel safe and not commercialised or prescriptive. Shared explorations of the potential benefits and concerns of these online spaces can shape the philosophy and vision of future platforms.Patient or public contributionThis work is set within a wider project which is developing an online peer support platform for those living with LTCs. A participatory, co-produced approach is integral to this work. The initial vision was steered by the experiences of our Patient and Public Involvement (PPI) groups, who emphasised the therapeutic value of peer-to-peer interaction. The focus groups confirmed the importance and potential benefit of this project. This paper represents the perspectives of PPI members who collaborate on research and public engagement at the mental-physical interface. A separate, independent Research Advisory Group (RAG), formed of members also living with LTCs, co-produced study documents, topic guides, and informed key decision-making processes. Finally, our co-investigator with lived experience (E. A.F.) undertook the analysis and write-up alongside colleagues, further strengthening the interpretation and resonance of our work. She shares first joint authorship, and as a core member of the research team, ensures that the conduct of the study is firmly grounded in the experience of people living with LTCs.

Project description:BACKGROUND:General practitioners (GPs) increasingly manage patients with multimorbidity but report challenges in doing so. Patients describe poor experiences with health care systems that treat each of their health conditions separately, resulting in fragmented, uncoordinated care. For GPs to provide the patient-centred, coordinated care patients need and want, research agendas and health system structures and policies will need to adapt to address this epidemiologic transition. This systematic review seeks to understand if and how multimorbidity impacts on the work of GPs, the strategies they employ to manage challenges, and what they believe still needs addressing to ensure quality patient care. METHODS:Systematic review and thematic synthesis of qualitative studies reporting GP experiences of managing patients with multimorbidity. The search included nine major databases, grey literature sources, Google and Google Scholar, a hand search of Journal of Comorbidity, and the reference lists of included studies. RESULTS:Thirty-three studies from fourteen countries were included. Three major challenges were identified: practising without supportive evidence; working within a fragmented health care system whose policies and structures remain organised around single condition care and specialisation; and the clinical uncertainty associated with multimorbidity complexity and general practitioner perceptions of decisional risk. GPs revealed three approaches to mitigating these challenges: prioritising patient-centredness and relational continuity; relying on knowledge of patient preferences and unique circumstances to individualise care; and structuring the consultation to create a sense of time and minimise patient risk. CONCLUSIONS:GPs described an ongoing tension between applying single condition guidelines to patients with multimorbidity as security against uncertainty or penalty, and potentially causing patients harm. Above all, they chose to prioritise their long-term relationships for the numerous gains this brought such as mutual trust, deeper insight into a patient's unique circumstances, and useable knowledge of each individual's capacity for the work of illness and goals for life. GPs described a need for better multimorbidity management guidance. Perhaps more than this, they require policies and models of practice that provide remunerated time and space for nurturing trustful therapeutic partnerships.

Project description:Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed 'treatment burden' and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems.

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

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

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