How do family-caregivers of patients with advanced cancer provide symptom self-management support? A qualitative study

Abstract Background The COVID-19 pandemic affects the processes of routine care for chronic patients. A better understanding helps to increase resilience of the health system and prepare adequately for next waves of the pandemic. Methods A qualitative study was conducted in 16 primary care practices: 6 solo working, 4 monodisciplinary and 7 multidisciplinary. Twenty-one people (doctors, nurses, dieticians) were interviewed, using semi-structured video interviews. A thematic analysis was done using the domains of the Chronic Care Model (CCM). Results Three themes emerged: changes in health care organization, risk stratification and self-management support. All participating practices reported drastic changes in organization with a collective shift towards COVID-19 care, and reduction of chronic care activities, less consultations, and staff responsible for self-management support put on hold. A transition to digital support did not occur. Few practitioners had a systematic approach to identify and contact high-risk patients for early follow-up. A practice with a pre-established structured team collaboration managed to continue most chronic care elements. Generally, practitioners expected no effects of the temporary disruption for patients, although they expressed concern about patients already poorly regulated. Conclusion Our findings show a disruption of the delivery of chronic care in the Belgium prim care context. In such contexts, the establishment of the CCM can facilitate continuity of care in crisis times. Short term actions should be directed to facilitate identifying high-risk patients and to develop a practice organization plan to organize chronic care and use digital channels for support, especially to vulnerable patients, during next waves of the epidemic.

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How Family Caregivers Assist with Upstream Healthcare Decision-Making by Community-Dwelling Persons with Advanced Cancer: A Qualitative Study (S821)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2018.12.274 ◽

2019 ◽

Vol 57 (2) ◽

pp. 492-493

Author(s):

James Dionne-Odom ◽

Deborah Ejem ◽

Rachel Wells ◽

Amber Barnato ◽

Richard Taylor ◽

...

Keyword(s):

Decision Making ◽

Qualitative Study ◽

Family Caregivers ◽

Advanced Cancer ◽

Community Dwelling ◽

Healthcare Decision ◽

Healthcare Decision Making

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Self-Management Support and eHealth When Managing Changes in Behavior and Mood of a Relative With Dementia: An Asynchronous Online Focus Group Study of Family Caregivers' Needs

Research in Gerontological Nursing ◽

10.3928/19404921-20180216-01 ◽

2018 ◽

Vol 11 (3) ◽

pp. 151-159 ◽

Cited By ~ 7

Author(s):

Judith G. Huis in het Veld ◽

Renate Verkaik ◽

Berno van Meijel ◽

Paul-Jeroen Verkade ◽

Wendy Werkman ◽

...

Keyword(s):

Focus Group ◽

Family Caregivers ◽

Self Management ◽

Management Support ◽

Focus Group Study

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Community nurses' self‐management support in older adults: A qualitative study on views, dilemmas and strategies

Health & Social Care in the Community ◽

10.1111/hsc.12853 ◽

2019 ◽

Vol 28 (1) ◽

pp. 195-203

Author(s):

Marian J. T. Bolscher‐Niehuis ◽

Madeleen J. Uitdehaag ◽

Anneke L. Francke

Keyword(s):

Older Adults ◽

Qualitative Study ◽

Self Management ◽

Management Support

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Self-management of patients with advanced cancer: A systematic review of experiences and attitudes

Palliative Medicine ◽

10.1177/0269216319883976 ◽

2020 ◽

Vol 34 (2) ◽

pp. 160-178 ◽

Cited By ~ 2

Author(s):

Sophie I van Dongen ◽

Kim de Nooijer ◽

Jane M Cramm ◽

Anneke L Francke ◽

Wendy H Oldenmenger ◽

...

Keyword(s):

Systematic Review ◽

Advanced Cancer ◽

Healthcare Professionals ◽

Management Strategies ◽

Personal Characteristics ◽

Qualitative Studies ◽

Medical Decision ◽

Self Management ◽

Management Support ◽

Quality Of Reporting

Background: Patients with advanced cancer are increasingly expected to self-manage. Thus far, this topic has received little systematic attention. Aim: To summarise studies describing self-management strategies of patients with advanced cancer and associated experiences and personal characteristics. Also, to summarise attitudes of relatives and healthcare professionals towards patient self-management. Design: A systematic review including non-experimental quantitative and qualitative studies. Data were analysed using critical interpretive synthesis. Included studies were appraised on methodological quality and quality of reporting. Data sources: MEDLINE, Embase, Cochrane Central, PsycINFO, CINAHL, Web of Science and Google Scholar (until 11 June 2019). Results: Of 1742 identified articles, 31 moderate-quality articles describing 8 quantitative and 23 qualitative studies were included. Patients with advanced cancer used self-management strategies in seven domains: medicine and pharmacology, lifestyle, mental health, social support, knowledge and information, navigation and coordination and medical decision-making (29 articles). Strategies were highly individual, sometimes ambivalent and dependent on social interactions. Older patients and patients with more depressive symptoms and lower levels of physical functioning, education and self-efficacy might have more difficulties with certain self-management strategies (six articles). Healthcare professionals perceived self-management as desirable and achievable if based on sufficient skills and knowledge and solid patient–professional partnerships (three articles). Conclusion: Self-management of patients with advanced cancer is highly personal and multifaceted. Strategies may be substitutional, additional or even conflicting compared to care provided by healthcare professionals. Self-management support can benefit from an individualised approach embedded in solid partnerships with relatives and healthcare professionals.

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