“The more you know, the more you realise it is really challenging to do”: Tensions and uncertainties in person-centred support for people with long-term conditions

Entwistle, Vikki; Cribb, Alan; Watt, Ian; Skea, Zoë; Owens, John; Morgan, Heather; Christmas, Simon

doi:10.1016/j.pec.2018.03.028

Cited by 44 publications

(49 citation statements)

References 27 publications

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“…Our qualitative findings based on the views and experiences of CPs of PwP also align with the only prior study on the role of CPs in PCC, which was based on the opinion of psychiatrists . Moreover, our study is unique from previous research because it also revealed that CPs of PwP may not be consistently engaged in PCC for PD, an important insight on how to potentially improve communication about “off.” Interviews with 26 clinicians in the United Kingdom about PCC for persons with long‐term conditions including PD revealed tensions and uncertainties in how to balance professional judgement with patient preferences and circumstances . This suggests that clinicians may require training and support to deliver PCC, and also to understand how to best engage CPs of PwP in PCC.…”

Section: Discussionmentioning

confidence: 99%

Improving patient‐centred care for persons with Parkinson's: Qualitative interviews with care partners about their engagement in discussions of “off” periods

Rastgardani

Armstrong

Marras

et al. 2019

Health Expectations

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Objective This study explored how care partners (CPs) of persons with Parkinson's (PwP) are engaged in discussions of “off” symptoms. Methods During qualitative interviews, CPs of PwP sampled by convenience through the Michael J Fox Foundation online clinical trial matching service were asked to describe their familiarity with “off” symptoms, how “off” symptoms were discussed with clinicians, and the impact of “off” symptoms on them. Data were analysed using constant comparative technique by all members of the research team. Results A total of 20 CPs were interviewed. Compared with PwP, they were more likely to describe “off” symptoms to clinicians. CPs identified important aspects of patient‐centred care for PD: establishing a therapeutic relationship, soliciting and actively listening to information about symptoms, and providing self‐management support to both PwP and CPs. CPs said that clinicians did not always engage CPs, ask about “off” symptoms or provide self‐management guidance, limiting their ability to function as caregivers. Conclusion By not engaging and educating CPs, “off” symptoms may not be identified or addressed, leading to suboptimal medical management and quality of life for PwP. These findings must be confirmed on a broader scale through ongoing research but suggest the potential need for interventions targeted at clinicians and at CPs to promote patient‐centred care for PwP.

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Section: Discussionmentioning

confidence: 99%

Improving patient‐centred care for persons with Parkinson's: Qualitative interviews with care partners about their engagement in discussions of “off” periods

Rastgardani

Armstrong

Marras

et al. 2019

Health Expectations

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“…Our analysis also surfaced a tension health professionals can experience when they realise that clinical recommendations based on what is generally effective advice will be impossible for some people to follow due to cost, but adjusting recommendations to reflect something more manageable seems to make for second best care for poorer patients. Either way, there are concerns about increasing health inequities for already vulnerable people (Lorenc, Petticrew, Welch, & Tugwell, ; White, Adams, & Heywood, ) and significant scope for contestation about how balances should be struck when trying to respectfully enable people to live well with long‐term conditions (Entwistle, Cribb, Watt, et al, ).…”

Section: Discussionmentioning

confidence: 99%

Health professionals’ experiences and perspectives on food insecurity and long‐term conditions: A qualitative investigation

Douglas

Machray

Entwistle

2019

Health Soc Care Community

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Estimates suggest that over 10% of the UK population are affected by food insecurity. International evidence indicates that food insecurity is a risk factor for many long-term health conditions, and can adversely affect people's ability to manage existing conditions. Food insecurity is thus not only a serious social concern but also a healthcare issue requiring the attention of UK health professionals. An exploratory qualitative study was undertaken to investigate the experiences and views of health professionals in north east Scotland, with a particular focus on support for people with long-term conditions whom they believed were affected by food insecurity. Two focus groups and nine semi-structured interviews were undertaken with a total of 20 health professionals between March and July 2016. Thematic analysis generated three main themes. The health professionals had (a) diverse levels of understanding and experience of food insecurity, but between them identified a range of (b) negative impacts of food insecurity on condition-management, especially for diet dependent conditions or medication regimes, and for mental health. Even for those health professionals more familiar with food insecurity, there were various (c) practical and ethical uncertainties about identifying and working with food insecure patients (it could be difficult to judge, for example, whether and how to raise the issue with people, to tailor dietary advice to reflect food insecurity, and to engage with other agencies working to address food insecurity). This study indicates that health professionals working with food insecure patients have learning and support needs that warrant further investigation. Debates about health professionals' responsibilities, and interventions to guide and support health professionals, including tools that might be used to screen for food insecurity, must also reflect the diverse lived needs and values of people who experience food insecurity. K E Y W O R D Sclinical management, food insecurity, long-term health conditions, self-management support | 405 DOUGLAS et AL.

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“…PCC is an essential part of high quality healthcare, yet integrating its principles into daily practice is not always straightforward . It is easy to smile and say ‘hi’, but when decisions need to be made, knowing how to be ‘respectful of, and responsive to individual patient preferences, needs and values’ can be equivocal and ethically demanding.…”

Section: Author Contributionsmentioning

confidence: 99%

“…Conceptualising PCC through the deliberative model encourages us to move beyond simplistic interpretations of PCC and acknowledge the complexity and ethical questions inherent to healthcare decision‐making . The model encourages us to view PCC with a broader ethical lens and to wrestle with competing moral obligations such as respecting a patient's right to choose when it conflicts with the rights and opportunities of others.…”

Section: Author Contributionsmentioning

confidence: 99%

Patient‐centred care through a broader lens: Supporting patient autonomy alongside moral deliberation

Gill

Fuscaldo

Page

2019

Emerg Medicine Australasia

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Patient-centred care (PCC) is an essential component of high-quality healthcare and shared decisionmaking is its cornerstone. Yet, integrating the principles of PCC into healthcare practice is not always straightforward and shared decisionmaking can be complicated and ethically demanding. While ethicists and academics routinely debate moral aspects of clinical care, such discussion among clinicians is less overt. In this paper, we use Emmanuel et al.'s deliberative model to provide a practical framework for considering ethical aspects of PCC and shared decision-making. The model encourages us to appreciate PCC through a broader lens and consider patient autonomy alongside other moral obligations such as justice and the equitable distribution of finite resources. The model can be used by healthcare providers, patients and caregivers to facilitate dialogue and moral deliberation regarding the merit of their preferences and values; in this way, individualised care can be delivered without compromising other important ethical obligations.

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“The more you know, the more you realise it is really challenging to do”: Tensions and uncertainties in person-centred support for people with long-term conditions

Abstract: Professional development and service improvement initiatives should recognise these tensions and uncertainties and support clinicians to navigate them well.

Cited by 44 publications

References 27 publications

Improving patient‐centred care for persons with Parkinson's: Qualitative interviews with care partners about their engagement in discussions of “off” periods

Improving patient‐centred care for persons with Parkinson's: Qualitative interviews with care partners about their engagement in discussions of “off” periods

Health professionals’ experiences and perspectives on food insecurity and long‐term conditions: A qualitative investigation

Patient‐centred care through a broader lens: Supporting patient autonomy alongside moral deliberation

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