The complexity of food for people with multiple long-term health conditions

ABSTRACT INTRODUCTION The prevalence of long-term health conditions (LTCs) continues to increase and it is normal for people to have several. Lifestyle is a core feature of the self-management support given to people with LTCs, yet it seems to fail to meet their needs. From a larger study exploring the experiences of this group, this paper reports on the role of food and mealtimes, and the effect of the nutritional advice on the lives of people with several LTCs. METHODS The experiences of 16 people with several advanced LTCs were explored using multiple qualitative case studies. Over an 18-month period, contact with participants included monthly conversations, two longer, semi-structured interviews and one interview with their primary care clinicians. The data were analysed inductively using thematic analysis. RESULTS There was profound social, psychological and cultural significance of food to the participants. These aspects of food were then described using the Whare Tapa Wha model of health. The approach to food and nutrition participants experienced in health care was closely associated with conventional weight management. They found this advice largely irrelevant and therefore ineffective. DISCUSSION The pressure people with several LTCs experience during clinical encounters has perverse effects on wellbeing and reinforces an overall sense of failure. This research challenges the assumption that all people have the will, agency and income to follow the advice they receive about nutrition and exercise. Considering people’s needs using the Whare Tapa Wha model of health offers clinicians a framework to re-conceptualise the core features of self-management support and provide realistic, compassionate care that will optimise the quality of life for people with multiple LTCs.

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Using the patient activation measure to examine the self-management support needs of a population of UK workers with long-term health conditions

Chronic Illness ◽

10.1177/17423953211043492 ◽

2021 ◽

pp. 174239532110434

Author(s):

Sally Hemming ◽

Fehmidah Munir

Keyword(s):

Mental Health ◽

Patient Activation ◽

Health Conditions ◽

Self Management ◽

Support Needs ◽

Management Support ◽

Long Term Conditions ◽

Mental Health Conditions ◽

Patient Activation Measure

Objectives To examine differences in patient activation and self-management support needs in a population of UK workers with long-term health conditions. Methods Demographic, health and activation information were taken from the data of participants with long-term conditions, collected via an online cross-sectional survey of workers. The 13-item British patient activation measure measured workers knowledge, skills and confidence towards self-managing. Results Three hundred and seven workers with mental health, musculoskeletal and other conditions completed the patient activation measure. Mental health conditions were most prevalent (36.8%). Workers were higher activated, however workers with mental health conditions were significantly less activated ( p = 0.006). Differences in activation by condition severity and age were revealed. Discussion This study provides insight to the activation of UK workers with long-term conditions. Whilst workers with mental health conditions need more training and education to self-manage, workers are variably activated indicating broader support needs. There is a gap for workplace self-management support. The patient activation measure is used in healthcare to improve people’s self-management and should be considered to be included in the workplace, and could form part of interventions to support workers self-management. More rigorous studies, including the patient activation measure, are needed to identify the best approaches to identifying workers self-management support needs.

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Participants’ experiences of and perceived value regarding different support types for long-term condition self-management programmes

Chronic Illness ◽

10.1177/1742395319869437 ◽

2019 ◽

pp. 174239531986943 ◽

Cited By ~ 2

Author(s):

Stephen Hughes ◽

Sophie Lewis ◽

Karen Willis ◽

Anne Rogers ◽

Sally Wyke ◽

...

Keyword(s):

Lived Experience ◽

Professional Training ◽

Self Management ◽

Chronic Obstructive ◽

Management Support ◽

Structured Interviews ◽

Obstructive Pulmonary Disease ◽

Term Condition ◽

Group Programme

Objectives Health professional-led group programmes are a common form of long-term condition self-management support. Much research has focused on clinical outcomes of group participation, yet there is limited research on how group participants perceive and experience the support they receive. We aim to identify the different types of support that participants receive from both facilitators and other participants, and how they value this support. Methods Semi-structured interviews were conducted with 20 participants taking part in a self-management group programme for a long-term condition (obesity, type 2 diabetes or chronic obstructive pulmonary disease). Data pertaining to support types were deductively identified through a social support framework prior to interpretive thematic analysis. Results Participants identified information and emotional support from both facilitators and other participants as complementary yet distinct. Facilitators’ support came from professional training and other participants’ support reflected the contextual, lived experience. Professional interactions were prioritised, constraining opportunities for participant–participant support to be received and exchanged. Discussion We identified a key gap in how self-management support is enacted in groups. Engaging participants to share experiential knowledge will make group support more relevant and mutually beneficial to participants living with a long-term condition.

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Employer perspectives concerning the self-management support needs of workers with long-term health conditions

International Journal of Workplace Health Management ◽

10.1108/ijwhm-02-2021-0030 ◽

2021 ◽

Vol ahead-of-print (ahead-of-print) ◽

Author(s):

Sally Hemming ◽

Hilary McDermott ◽

Fehmidah Munir ◽

Kim Burton

Keyword(s):

Health Conditions ◽

Work Outcomes ◽

Self Management ◽

Work Demands ◽

Management Support ◽

Long Term Conditions ◽

Content Type ◽

Workplace Support ◽

Line Manager

PurposeLong-term health conditions are a significant occupational and global burden and can undermine people's ability to work. Workplace support for self-management of long-term conditions has the potential to minimise adverse work effects, by enhancing health and work outcomes. No data exist about employers' views concerning supporting workers with long-term conditions to self-manage.Design/methodology/approachThe exploration of employers' views involved recruiting 15 participants with responsibilities for workplace health, well-being and safety responsibilities, who participated in a semi-structured interview about self-management and support. Data were analysed using a qualitative six-stage thematic analysis technique.FindingsSelf-management support is not purposely provided to workers with long-term conditions. Support in any form rests on workers disclosing a condition and on their relationship with their line-manager. While employers have considerable control over people's ability to self-manage, they consider that workers are responsible for self-management at work. Stigma, work demands and line-manager behaviours are potential obstacles to workers' self-management and support.Practical implicationsWorkplace discussions about self-managing long-term conditions at work should be encouraged and opened up, to improve health and work outcomes and aligned with return-to-work and rehabilitation approaches. A wider biopsychosocial culture could help ensure workplaces are regarded as settings in which long-term conditions can be self-managed.Originality/valueThis study highlights that employer self-management support is not provided to workers with long-term conditions in a purposeful way. Workplace support depends on an employer knowing what needs to be supported which, in turn, depends on aspects of disclosure, stigma, work demands and line management.

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Experiences of self-management support in patients with diabetes and multimorbidity: a qualitative study in Norwegian general practice

Primary Health Care Research & Development ◽

10.1017/s1463423620000432 ◽

2020 ◽

Vol 21 ◽

Author(s):

Monica Sørensen ◽

Karen Synne Groven ◽

Bjørn Gjelsvik ◽

Kari Almendingen ◽

Lisa Garnweidner-Holme

Keyword(s):

Diabetes Mellitus ◽

General Practice ◽

Well Being ◽

Self Management ◽

Management Support ◽

Structured Interviews ◽

Long Term Conditions ◽

Patients With Diabetes ◽

Emotional Aspects

Abstract Aim: The purpose of this study was to explore how patients with diabetes and multimorbidity experience self-management support by general practitioners (GPs), nurses and medical secretaries in Norwegian general practice. Background: Self-management support is recognised as an important strategy to improve the autonomy and well-being of patients with long-term conditions. Collaborating healthcare professionals (cHCPs), such as nurses and medical secretaries, may have an important role in the provision of self-management support. No previous study has explored how patients with diabetes and multimorbidity experience self-management support provided by cHCPs in general practice in Norway. Methods: Semi-structured interviews with 11 patients with type 1 diabetes mellitus (T1DM) or type 2 diabetes mellitus (T2DM) with one or more additional long-term condition were performed during February–May 2017. Findings: Patients experienced cHCPs as particularly attentive towards the psychological and emotional aspects of living with diabetes. Compared to GPs, whose appointments were experienced as stressful, patients found cHCPs more approachable and more likely to address patients’ questions and worries. In this sense, cHCPs complemented GP-led diabetes care. However, neither cHCPs nor GPs were perceived to involve patients’ in clinical decisions or goal setting during consultations.

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How do facilitators of group programmes for long-term conditions conceptualise self-management support?

Chronic Illness ◽

10.1177/1742395318792068 ◽

2018 ◽

Vol 16 (2) ◽

pp. 104-118

Author(s):

Stephen Hughes ◽

Sophie Lewis ◽

Karen Willis ◽

Anne Rogers ◽

Sally Wyke ◽

...

Keyword(s):

Health Professional ◽

Goal Setting ◽

Behaviour Change ◽

Self Management ◽

Chronic Obstructive ◽

Management Support ◽

Structured Interviews ◽

Lifestyle Behaviour ◽

Long Term Conditions

Objectives Increasing self-management skills in people with long-term conditions is widely advocated in policies and guidelines. Group programmes are a common format; yet, how self-management support objectives are enacted in their delivery is poorly understood. Our aim is to explore the perspectives of group programme facilitators. Methods We undertook thematic analysis of transcribed data from in-depth semi-structured interviews with health professional facilitators (n = 13) from six diverse self-management support group programmes (of obesity, diabetes and chronic obstructive pulmonary disease). Results Facilitators viewed group programmes as responses to health system pressures, e.g. high patient demand. They focussed on providing in-depth education and instruction on physical health, risks and lifestyle behaviour change and emphasised self-responsibility for behaviour change whilst minimising goal setting and support amongst group participants. There were tensions between facilitators’ professional identity and group leader role. Discussion Group self-management support programmes may not be realising the broader aspirations advocated in long-term condition policy to support medical, emotional and social aspects of long-term conditions by minimising shared learning, problem solving, building of self-efficacy and goal setting. This suggests a disconnect at implementation. Increasing understandings of theoretical and practical self-management support in group programmes across both implementation and health professional (HCP) training will further the professional skills in this format.

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“I’m still me – I’m still here!” Understanding the person’s sense of self in the provision of self-management support for people with progressive neurological long-term conditions

Disability and Rehabilitation ◽

10.1080/09638288.2018.1424953 ◽

2018 ◽

Vol 41 (11) ◽

pp. 1296-1306 ◽

Cited By ~ 5

Author(s):

Stefan Tino Kulnik ◽

Lucinda Hollinshead ◽

Fiona Jones

Keyword(s):

Sense Of Self ◽

Self Management ◽

Management Support ◽

Long Term Conditions

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Systemic Models of Self-Management

Promoting Self-Management of Chronic Health Conditions ◽

10.1093/med-psych/9780190606145.003.0022 ◽

2017 ◽

pp. 499-520

Keyword(s):

Chronic Care Model ◽

Chronic Health Condition ◽

Health Condition ◽

Self Management ◽

Management Support ◽

Integrated Healthcare ◽

Chronic Health ◽

Policy Analysts ◽

Definition Of

Researchers and healthcare policy analysts have called for systemic change in healthcare systems, because those systems typically do not incorporate long-term planning of chronic health condition care. There is an international movement to create comprehensive, integrated healthcare models that can better assist individuals who have chronic health conditions. This chapter includes a discussion of the definition of self-management support (SMS) and how it is different from self-management, a description of the typical components of SMS interventions, how SMS is different than disease management programs, and some examples of SMS programs. This chapter also covers several systemic models of self-management, including the Chronic Care Model and the Innovative Care for the Chronic Conditions Framework. It ends with brief sections on the economic reasons to promote SMS and integrated healthcare and on the future of self-management.

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