What Facilitates “Patient Empowerment” in Cancer Patients During Follow-Up: A Qualitative Systematic Review of the Literature

Jørgensen, Clara Rübner; Thomsen, Thora Grothe; Ross, Lone; Dietz, Susanne Malchau; Therkildsen, Signe; Grøenvold, Mogens; Rasmussen, Charlotte Lund; Johnsen, Anna Thit

doi:10.1177/1049732317721477

Cited by 74 publications

(68 citation statements)

References 63 publications

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“…In healthcare, power, structure and agency shape both staff and patient experiences in different ways; whilst hospital hierarchical systems can be oppressive, they also create patient empowerment [46]. Patient empowerment can be an ongoing process, where active patient roles, information and knowledge, and positive, caring communications with professionals can all empower patients within health systems [47]. These patient experiences have their antecedents in staff well-being and positive working environments, where staff themselves are empowered to enable high quality patient care [3].…”

Section: Realist Social Theory and Powermentioning

confidence: 99%

The importance of power, context and agency in improving patient experience through a patient and family centred care approach

Ocloo

Goodrich

Tanaka

et al. 2020

Health Res Policy Sys

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Background: Research shows that the way that healthcare staff experience their job impacts on their individual performance, patient experience and outcomes as well as on the performance of organisations. This article builds on this literature by investigating, with multi-disciplinary clinical teams as well as patients and relatives, what factors help or hinder changes designed to improve patient experience. Methods: Qualitative research looking at patient-and family-centred care (PFCC) on two care pathways (stroke and hip fracture) was conducted in England and Wales. A realist approach combined with participatory action research was used to account for the complexity of organisational context and power relations. Multiple methods were used, including documentary analysis, participatory steering groups with staff and patient representatives, observations of the care pathways (n = 7), staff and patient and relative focus groups (n = 8), and hospital staff, patient and PFCC staff interviews (n = 47). Results: Findings highlight multiple factors that support and hinder good patient experiences. Within individual care, paternalistic values and a lack of shared decision-making and patient-centred care still exist. Supportive interdisciplinary teamwork is needed to address issues of hierarchy, power and authority amongst staff and managers. At the organisational level, key issues of waiting times, patient flow, organisational resources and timely discharge affect staff's time and capacity to deliver care. In addition, macro contextual factors, such as finance, policy, targets and measures, set particular limits for improvement projects. Conclusions: Given this context, improving patient experience needs to go well beyond small-scale projects at the micro and meso level to incorporate a more critical understanding of systems, the wider organisational context and how power operates at multiple levels to enable and constrain action. In order to more meaningfully understand and address the factors that can help or hinder activities to improve patient experiences, PFCC frameworks and methods need to account for how power inequities operate and require the adoption of more participatory coproduced and empowering approaches to involve patients, relatives, carers and staff in improving complex healthcare environments.

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Section: Realist Social Theory and Powermentioning

confidence: 99%

The importance of power, context and agency in improving patient experience through a patient and family centred care approach

Ocloo

Goodrich

Tanaka

et al. 2020

Health Res Policy Sys

View full text Add to dashboard Cite

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“…In the presentation round, participants will share information about their background and cancer diagnosis, and they will be encouraged to use selected picture cards to narratively describe their expectations and desired outcomes of participation. The aim of the session is to enhance group formation and to establish a sense of community among participants since this may facilitate patient empowerment [45]. Central staff members (course leader, physician, clinical dietitian, and evening hostess) participate.…”

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confidence: 99%

Rationale and design of a randomised controlled trial investigating the effect of multidisciplinary nutritional rehabilitation for patients treated for head and neck cancer (the NUTRI-HAB trial)

Kristensen

Wessel²,

Beck

et al. 2020

Nutr J

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Background: Eating problems frequently affect quality of life and physical, psychological and social function in patients treated for head and neck cancer (HNC). Residential rehabilitation programmes may ameliorate these adverse effects but are not indicated for all individuals. Systematic assessment of rehabilitation needs may optimise the use of resources while ensuring referral to rehabilitation for those in need. Yet, evidence lacks on which nutrition screening and assessment tools to use. The trial objectives are: 1) To test the effect of a multidisciplinary residential nutritional rehabilitation programme compared to standard care on the primary outcome body weight and secondary outcomes health-related quality of life, physical function and symptoms of anxiety and depression in patients curatively treated for HNC and 2) To test for correlations between participants' development in outcome scores during their participation in the programme and their baseline scores in Nutritional Risk Screening 2002 (NRS 2002), the Scored Patient-Generated Subjective Global Assessment Short Form (PG-SGA SF), and M. D. Anderson Dysphagia Inventory (MDADI) and to assess sensitivity, specificity and predictive values of the three tools in relation to a clinically relevant improvement in outcome scores.

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“…Although it could be argued that this challenge is grounded in overly broad inclusion criteria, several studies considered such inclusiveness a strength, emphasising the added value of including research that did not explicitly investigate barriers and facilitators [17,24]. Conversely, several studies reported the lack of explicit focus on barriers and facilitators within the primary literature as a limitation to their synthesis [53][54][55].…”

Section: Methodological Issues In Conducting Barrier and Facilitator mentioning

confidence: 99%

Reporting and synthesis practices in barriers and facilitators reviews: a methodological systematic review

Bach-Mortensen

Verboom

2019

Preprint

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Background: An increasing number of systematic reviews published in high-ranking journals set out to identify and synthesise research on ‘barriers’ to and ‘facilitators’ of the achievement of various outcomes. Yet, this type of review has been criticised for relying on aggregative synthesis approaches (such as ‘vote counting’), and for generating overly simplistic representations of complex social phenomena. While proponents have argued that barriers and facilitators reviews have both explanatory value and the potential to support policy and practice, critics have recommended retiring this genre of review altogether. No review has systematically examined the synthesis practices used in barriers and facilitators reviews, and consequently the factual basis of arguments both for and against these reviews is unclear. We therefore sought to describe and appraise the reporting and synthesis practices used in recently published health-related barriers and facilitators reviews. Methods: We conducted a methodological systematic review of reviews in accordance with the PRISMA guidelines. A protocol for this review was prospectively registered in PROSPERO (CRD4201811236). Results: One hundred reviews published over a thirteen-month period were identified. The findings indicate that (1) barriers and facilitators reviews are frequently published, (2) there is a high degree of variation in the synthesis and categorisation practices applied in these reviews, and (3) most reviews neither critically engage with, nor provide a rationale for using, the concepts of barrier and facilitator. While in most cases the barriers and facilitators approach was used without justification or critical discussion by review authors, we identified several common issues across the minority of reviews that included explicit discussion of the approach. These issues tended to be either conceptual/definitional (e.g. ideas about the interrelationships and overlap between factors) or methodological/practical (e.g. challenges related to the aggregation of heterogeneous research). Conclusion: This review provides a systematic snapshot of the synthesis and reporting practices used in barriers and facilitators reviews. Going forward, we suggest that such reviews would benefit from (1) clearly defining their constructs of analysis, (2) explicitly describing how factors are extracted and subsequently synthesised, and (3) providing critical reflection on the contextual variability and reliability of identified factors.

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What Facilitates “Patient Empowerment” in Cancer Patients During Follow-Up: A Qualitative Systematic Review of the Literature

Cited by 74 publications

References 63 publications

The importance of power, context and agency in improving patient experience through a patient and family centred care approach

The importance of power, context and agency in improving patient experience through a patient and family centred care approach

Rationale and design of a randomised controlled trial investigating the effect of multidisciplinary nutritional rehabilitation for patients treated for head and neck cancer (the NUTRI-HAB trial)

Reporting and synthesis practices in barriers and facilitators reviews: a methodological systematic review

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