Understanding help-seeking decisions in people with heart failure: A qualitative systematic review

Clark, Alexander M.; Savard, L.; Spaling, Melisa; Heath, Stephanie; Duncan, Amanda; Spiers, Jude

doi:10.1016/j.ijnurstu.2012.05.010

Cited by 55 publications

(58 citation statements)

References 82 publications

(249 reference statements)

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“…The initial diagnosis of heart failure engenders a sense of disruption and hopelessness from which patients recover variably [91, 94, 95, 98, 99]. In general, patients’ knowledge about heart failure is poor; many find the condition bewildering and explanations from professionals confusing or unforthcoming [91].…”

Section: Resultsmentioning

confidence: 99%

Understanding heart failure; explaining telehealth – a hermeneutic systematic review

Greenhalgh

A’Court

Shaw

2017

BMC Cardiovasc Disord

120

212

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BackgroundEnthusiasts for telehealth extol its potential for supporting heart failure management. But randomised trials have been slow to recruit and produced conflicting findings; real-world roll-out has been slow. We sought to inform policy by making sense of a complex literature on heart failure and its remote management.MethodsThrough database searching and citation tracking, we identified 7 systematic reviews of systematic reviews, 32 systematic reviews (including 17 meta-analyses and 8 qualitative reviews); six mega-trials and over 60 additional relevant empirical studies and commentaries. We synthesised these using Boell’s hermeneutic methodology for systematic review, which emphasises the quest for understanding.ResultsHeart failure is a complex and serious condition with frequent co-morbidity and diverse manifestations including severe tiredness. Patients are often frightened, bewildered, socially isolated and variably able to self-manage. Remote monitoring technologies are many and varied; they create new forms of knowledge and new possibilities for care but require fundamental changes to clinical roles and service models and place substantial burdens on patients, carers and staff. The policy innovation of remote biomarker monitoring enabling timely adjustment of medication, mediated by “activated” patients, is based on a modernist vision of efficient, rational, technology-mediated and guideline-driven (“cold”) care. It contrasts with relationship-based (“warm”) care valued by some clinicians and by patients who are older, sicker and less technically savvy. Limited uptake of telehealth can be analysed in terms of key tensions: between tidy, “textbook” heart failure and the reality of multiple comorbidities; between basic and intensive telehealth; between activated, well-supported patients and vulnerable, unsupported ones; between “cold” and “warm” telehealth; and between fixed and agile care programmes.ConclusionThe limited adoption of telehealth for heart failure has complex clinical, professional and institutional causes, which are unlikely to be elucidated by adding more randomised trials of technology-on versus technology-off to an already-crowded literature. An alternative approach is proposed, based on naturalistic study designs, application of social and organisational theory, and co-design of new service models based on socio-technical principles. Conventional systematic reviews (whose goal is synthesising data) can be usefully supplemented by hermeneutic reviews (whose goal is deepening understanding).Electronic supplementary materialThe online version of this article (doi:10.1186/s12872-017-0594-2) contains supplementary material, which is available to authorized users.

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Section: Resultsmentioning

confidence: 99%

Understanding heart failure; explaining telehealth – a hermeneutic systematic review

Greenhalgh

A’Court

Shaw

2017

BMC Cardiovasc Disord

120

212

View full text Add to dashboard Cite

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“…Data from the studies were extracted into the Joanna Briggs Institute software for systematic review (Qualitative Appraisal and Review Instrument) and then analysed for common themes taking account of the nature and quality of the component studies. This approach has been described more fully in past reviews to understand cardiac patient perspectives, including previous reviews of people with heart disease25 and HF 26…”

Section: Methodsmentioning

confidence: 99%

Determinants of effective heart failure self-care: a systematic review of patients’ and caregivers’ perceptions

Clark

Spaling

Harkness

et al. 2014

Heart

131

158

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“…In reality, when heart disease or more specifically heart failure is described by patients and families, the picture is of an extreme condition with a range of negative consequences (Clark et al, 2012).…”

Section: Illness Identitiesmentioning

confidence: 99%

Illness identity as an important component of candidacy: Contrasting experiences of help-seeking and access to care in cancer and heart disease

Macdonald

Blane

Browne

et al. 2016

Social Science & Medicine

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How and when we use health services or healthcare provision has dominated exploration of and debates around healthcare access. Levels of utilisation are assumed as a proxy for access. Yet, focusing on utilisation conceals an important aspect of the access conundrum: the relationships that patients and potential patients have with the healthcare system and the professionals within those systems. Candidacy has been proposed as an antidote to traditional utilisation models. The Candidacy construct offers the ability to include patient-professional aspects alongside utilisation and thus promotes a deeper understanding of access. Originally applied to healthcare access for vulnerable populations, additional socio-demographic factors, including age and ethnicity, have also been shown to influence the Candidacy process. Here we propose a further extension of the Candidacy construct and illustrate the importance of illness identities when accessing healthcare.Drawing on a secondary data analysis of three data sets of qualitative interviews from colorectal cancer and heart failure patients we found that though similar access issues are apparent prediagnosis, diagnosis marks a critical juncture in the experience of access. Cancer patients describe a 2 person-centred responsive healthcare system where their patienthood requires only modest assertion. Cancer speaks for itself. In marked contrast heart failure patients, describe struggling within a seemingly impermeable system to understand their illness, its implications and their own legitimacy as patients. Our work highlights the pressing need for healthcare professionals, systems and policies to promote a person centred approach, which is responsive and timely, regardless of illness category. To achieve this, attitudes regarding the importance or priority afforded to different categories of illness need to be tackled as they directly influence ideas of Candidacy and consequently access and experiences of care.

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Understanding help-seeking decisions in people with heart failure: A qualitative systematic review

Cited by 55 publications

References 82 publications

Understanding heart failure; explaining telehealth – a hermeneutic systematic review

Understanding heart failure; explaining telehealth – a hermeneutic systematic review

Determinants of effective heart failure self-care: a systematic review of patients’ and caregivers’ perceptions

Illness identity as an important component of candidacy: Contrasting experiences of help-seeking and access to care in cancer and heart disease

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