Rethinking how we understand individual healthcare needs for people living with long‐term conditions: a qualitative study

It has been suggested that we need to ‘Think Differently’ about how we organise care for people with long‐term conditions. Current approaches prioritise reducing population disease burden, meaning health need is defined predominantly in terms of disease status, or even risk of disease. However, the result is care which overburdens some individuals. The World Health Organisation has described the need to view health as a ‘resource for living’ and not an end in itself. This study considers whether this view of health offers an alternative view of healthcare need in people living with long‐term conditions. We know that chronic disease can be disruptive for some people; but not all. Our research question asked: Why do people experience long‐term conditions differently, and what are the implications for understanding healthcare need? Our phenomenographic study involved qualitative interviews with 24 people living with at least one of the three conditions (diabetes, depression and chronic pain) and explored resources for and demands on daily living. Interviews all took place during 2012 and 2013. A narrative form analysis identified three patterns of illness experience (Gliding Swan, Stormy Seas and Stuck Adrift). Narrative content analysis revealed four factors explaining the variation: personalising care, existence of meaningful anchors, partnership and excess demands. We thus propose three new categories of healthcare need described by a consideration of health as a resource for living: Resilient, Vulnerable and Disconnected. We discuss how the emerging findings may offer scope to develop new needs assessment and patient‐reported outcome measure tools. And so, offer a different way of thinking about the organisation for care for people with long‐term conditions.     

Linking people with long‐term health conditions to healthy community activities: development of Patient‐Led Assessment for Network Support (PLANS)

Objective

To combine insights from service users with long‐term conditions (LTCs) to assist the development of a community referral intervention designed to promote engagement and improve access to health‐relevant resources.

Background

Social deprivation and reduced access to resources have been causally linked with social isolation and the ability to manage LTCs. Participation in meaningful activity has been associated with positive health benefits, and strategies to promote access to community activities have shown some potential to improve outcomes for people with LTCs. This suggests the need to develop an engagement and referral intervention in partnership with service users and community groups as part of mainstream self‐care support.

Method

A series of focus groups and interviews with members of community groups in Greater Manchester designed as an iterative and collaborative approach to elicit the role of personal and community networks that support long‐term condition management (LTCM) to develop a community referral tool.

Results

Participants reported a broad range of resources relevant to LTCM that often went beyond the usual concerns associated with self‐care. This helped to inform a tool (PLANS) to tailor access to types of community‐based resources which can support LTCM.

Conclusions

Understanding the everyday challenges of living with a LTC highlighted the importance of connecting and engaging with localized support for people. In response to this, we developed an intervention (PLANS) which tailors access to local resources based on personal preferences, needs and acceptability to encourage service users to engage with sustainable health choices.     

Care planning for long‐term conditions – a concept mapping

Objective

This article focuses on approaches within clinical practice that seek to actively involve patients with long‐term conditions (LTCs) and how professionals may understand and implement them. Personalized care planning is one such approach, but its current lack of conceptual clarity might have impeded its widespread implementation to date. A variety of overlapping concepts coexist in the literature, which have the potential to impair both clinical and research agendas. The aim of this article is therefore to explore the meaning of the concept of care planning in relation to other overlapping concepts and how this translates into clinical practice implementation.

Methods

Searches were conducted in the Cochrane database for systematic reviews, CINHAL and MEDLINE. A staged approach to conducting the concept mapping was undertaken, by (i) an examination of the literature on care planning in LTCs; (ii) identification of related terms; (iii) locating reviews of those terms. Retrieved articles were subjected to a content analysis, which formed the basis of our concept maps. (iv) We then appraised these against knowledge and experience of the implementation of care planning in clinical practice.

Results and Conclusions

Thirteen articles were retrieved, in which the core importance of patient‐centredness, shared decision making and self‐management was highlighted. Literature searches on these terms retrieved a further 24 articles. Our concept mapping exercise shows that whilst there are common themes across the concepts, the differences between them reflect the context and intended outcomes within clinical practice. We argue that this clarification exercise will allow for further development of both research and clinical implementation agendas.     

Empowering people to help speak up about safety in primary care: Using codesign to involve patients and professionals in developing new interventions for patients with multimorbidity

Background

Multimorbidity, defined as the presence of two or more long‐term conditions, is increasingly common in primary care, and patients with multimorbidity may face particular barriers to quality of care and increased safety risks due to the complexity of managing multiple conditions. Consistent with calls to directly involve service users in improving care, we aimed to use design materials to codesign new interventions to improve safety in primary care.

Design

We drew on two established methods—accelerated experience‐based codesign and the future workshop approach. We synthesized design materials based on research into the patient experience of safety and multimorbidity in primary care to enable both patients, service users and carers, and primary health‐care professionals to propose interventions to improve care.

Results

Both patients and professionals prioritized polypharmacy as a threat to safety. Their recommendations for supportive interventions were consistent with Burden of Treatment theory, emphasizing the limited capacity of patients with multimorbidity and the need for services to proactively offer support to reduce the burden of managing complex treatment regimes.

Discussion & Conclusions

The process was feasible and acceptable to participants, who valued the opportunity to jointly propose new interventions. The iterative workshop approach enabled the research team to better explore and refine the suggestions of attendees. Final recommendations included the need for accessible reminders to support medication adherence and medication reviews for particularly vulnerable patients conducted with pharmacists within GP practices.     

Supporting patients with long‐term conditions in the community: Evaluation of the Greater Manchester Community Pharmacy Care Plan Service

The Greater Manchester Community Pharmacy Care Plan (GMCPCP) service provided tailored care plans to help adults with one or more qualifying long‐term condition (hypertension, asthma, diabetes and COPD) to achieve health goals and better self‐management of their long‐term conditions. The service ran between February and December 2017. The aim of this study was to investigate the impact of the service on patient activation, as measured by the PAM measure (primary outcome). Secondary outcomes included quality of life (EQ‐5D‐5L, EQ‐VAS), medication adherence (MARS‐5), NHS resource use and costs, systolic and diastolic blood pressure, HDL cholesterol ratio levels and body mass index (BMI). A before and after design was used, with follow‐up at 6‐months. A questionnaire was distributed at follow‐up and telephone interviews with willing participants were used to investigate patient satisfaction with the service. The study was approved by the University of Manchester Research Ethics Committee. Quantitative data were analysed in SPSS v22 (IBM). A total of 382 patients were recruited to the service; 280 (73%) remained at follow‐up. Ten patients were interviewed and 43 completed the questionnaire. A total of 613 goals were set; mean of 1.7 goals per patient. Fifty percent of goals were met at follow‐up. There were significant improvements in PAM, EQ‐5D‐5L and EQ‐VAS scores and significant reductions in systolic blood pressure, BMI and HDL cholesterol ratio at follow‐up. Mean NHS service use costs were significantly lower at follow‐up; with a mean decrease per patient of £236.43 (±SD £968.47). The mean cost per patient for providing the service was £203.10, resulting in potential cost‐savings of £33.33 per patient (SD ± 874.65). Questionnaire respondents reported high levels of satisfaction with the service. This study suggests that the service is acceptable to patients and may lead to improvements in health outcomes and allows for modest cost savings. Limitations of the study included the low response rate to the patient questionnaire.     

Financing elderly people's long‐term care needs: Evidence from China

Confronted by accelerated population aging, China is establishing a long‐term care (LTC) system. This study discusses challenges and recommendations for financing China's LTC system. On the basis of the data on elderly people's self‐care ability from the Chinese Longitudinal Healthy Longevity Survey, we calculate the size of the elderly population that need LTC for the period from 2015 to 2030 and analyse the increasing tendency of LTC expenses by considering the impact of price increase. We also analyse the local governments' financial capacity for LTC support by comparing the expense level to the fiscal revenue. The study found that aging will double the LTC expenses by 2030. Therefore, this study suggests the establishment of an LTC insurance system that allocates LTC expenses, which are currently borne by individuals and families, more fairly among the government, individuals, and families. Moreover, with the current LTC reforms, implemented primarily by local governments in China, we believe that the central government should bear some of the fiscal responsibility by conducting fiscal transfers to partially support undeveloped regions that are establishing an LTC system.     

Written action plans for children with long‐term conditions: A systematic review and synthesis of qualitative data

Background

Long‐term conditions (LTCs) in children require a high level of self‐management. Written action plans (WAPs) have been advocated to guide decision‐making and support self‐management but there is uncertainty about how WAPs “work” and what aspects are important for successful implementation.

Objective

To review and synthesize existing qualitative evidence about the design and use of WAPs across childhood LTCs.

Method

We undertook a systematic search of the literature (Medline, EMBASE, CiNAHL, PsycInfo, Web of science) from inception to May 2015; critically appraised included studies; and synthesized the findings, drawing on normalisation process theory.

Results

3473 titles were screened and 53 papers read in full. Nine studies (four key, two minor and three of poor quality) contributed to our analysis, predominantly work on asthma from the USA and in specialist settings. WAPs may help to alleviate user worry and boost confidence. Confidence to act was closely linked to feelings of responsibility and authority. The value and use of WAPs are determined by multiple factors, and varies between different user groups. Logistical challenges include sharing a WAP between different stakeholders and keeping it up to date. Colour coding and pictures may enhance the appeal and usability of WAPS.

Conclusion

WAPs are complex interventions but our understanding of their use and value in children with LTCs is limited. WAPs need to meet the needs of users who have different requirements/levels of understanding and confidence according to their different roles. Future research into WAPs needs to be both disease and context‐specific.     

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

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.     

The context of coping: a qualitative exploration of underlying inequalities that influence health services support for people living with long‐term conditions

Coping with chronic illness encapsulates both practical and emotional aspects of living life in relation to one's long‐term health condition(s). Dominant health psychology approaches for understanding coping, which underpin a more recent policy discourse on ‘self‐management’, focus sharply on the person affected by illness and potentially mask the influence of overarching social structure. In this paper we draw on qualitative interviews with 48 people living with long‐term conditions (LTCs), in order to highlight the role that structural configurations such as healthcare systems may play in either helping or hindering people's efforts to cope with chronic illness. We argue that coping is a social process in which health and related services, situated within their wider political‐economic contexts, play an active role in shaping people's attempts to live well with LTCs. More specifically, health systems are sites of social and cultural capital exchange that can differentially mobilise coping resources through access, continuity of care, and coordination across services. Whilst it is essential to recognise the personal agency of people living with chronic illness, it is also vital to acknowledge the underlying inequalities that affect the ways in which services can support such resourcefulness.     

Unmet health and rehabilitation needs of people with long‐term neurological conditions in Queensland,Australia

The survival and life expectancy rates of people with traumatic and degenerative neurological conditions are increasing, sometimes up to several decades. Yet compared to the general population, people with a disability continue to experience poorer health and are at greater risk of developing secondary health problems and facing barriers to services they require. These trends have significant implications for provision of health and rehabilitation services. In this study, the adequacy of health and rehabilitation services provided to people with long‐term neurological conditions and their unmet needs were explored from the perspectives of individual users, their nominated family members and key service providers. A qualitative research design with maximum variation sampling was used. Data were collected from semi‐structured interviews with 65 participants comprising 25 long‐term care service users, nominated family members or friends (n = 22) and care service providers (n = 18) in Queensland, Australia. All service users needed assistance with usual daily activities, and 22 were wheelchair dependent. The hours of funded personal care ranged from 2 to 201 hours per week. Data were analysed using framework analysis. Participants generally perceived that specialist medical and hospital services were adequate and satisfactory. They valued supportive health and rehabilitation professionals and receiving client‐centred physical rehabilitation. However, the majority of participants (n = 17) had perceived unmet needs for physical rehabilitation (n = 14), other health or rehabilitation services (n = 10) or counselling (n = 6). Community‐based physical maintenance rehabilitation was often perceived as inadequate, costly or inconveniently located. Participants highlighted the importance of personal and family counselling and information provision at time points such as diagnosis. The findings contribute to the limited international evidence on the gaps in health and rehabilitation services for people with neurological conditions receiving lifetime care services in the community. A continuum of integrated rehabilitation services to minimise avoidable impairments, optimise independence and functioning, and sustain quality of life is warranted.     

A scoping review to understand the effectiveness of linking schemes from healthcare providers to community resources to improve the health and well‐being of people with long‐term conditions

The prevalence of people living with long‐term conditions is increasing, accompanied by an increased expectation that patients will become more involved in self‐management. Long‐term conditions are associated with increased social isolation and poor physical and mental health. But there remains a gap in health provision between providing medical treatment and effectively addressing psychosocial well‐being. One potential way of addressing this gap is by utilising social interventions which link patients from health services to community‐based sources of support. However, the mechanisms involved in the delivery of interventions providing that link and their effectiveness remain unclear. This review adopted the methodological framework for conducting scoping studies, searching for both academic and grey literature on social interventions which link people from healthcare settings to a range of community and voluntary sector organisations. A literature search between May and June 2013, involving five electronic databases, hand searching of two journals and the use of Google search engine, identified seven studies relevant to the review question. In terms of key characteristics and mechanisms of the interventions, mental health conditions and social isolation were the most common reasons for referral to the interventions, and referrals were usually made through general practices. Almost all the interventions were facilitator‐led, whereby the facilitator worked to identify and link participants to appropriate community‐based resources. In regard to health and social outcomes and their cost‐effectiveness, studies reported improvement to participants' psychological and social well‐being as well as their decreased use of health services, although there were limited measures of participants' physical health outcomes. Interventions for linking patients from healthcare setting to community‐based resources target and address psychosocial needs of participants. The review identified involvement of health professionals in aiding the referral of patients to the intervention and the role of the intervention facilitators as key components of the interventions.     

Teachers' perspectives of supporting pupils with long‐term health conditions in mainstream schools: a narrative review of the literature

Teachers are supporting an increasing number of pupils with long‐term health conditions in mainstream schools. The aim of this literature review was to critically appraise and synthesise research that has examined teachers' perceptions of the key barriers and facilitators to supporting pupils with long‐term conditions, teachers' training needs and interventions that aim to improve teachers' knowledge of long‐term conditions, and teachers' confidence in supporting children and young people. A narrative literature review was conducted using a systematic search of computerised databases and manual searches of key journals and reference lists to retrieve studies published between 2003 and 2013. Studies were critically appraised and key themes across studies identified. In total, 61 papers from 58 studies were included in the review. The findings suggest that teachers receive little formal training relevant to long‐term condition management and are fearful of the risks involved in teaching children and young people with long‐term conditions. Communication between families, school and health and social care services appears to be poor. Educational programmes developed in conjunction with and/or delivered by healthcare professionals seem to have the potential to increase teachers' knowledge and confidence. This review suggests that healthcare professionals have an important role to play in supporting teachers in identifying and meeting the needs of pupils with long‐term conditions. It is vital that pupils with long‐term conditions receive appropriate care and support in schools to ensure their safety and help them to integrate with their peers and achieve their academic potential. Limitations in the current evidence are highlighted and implications for future research are identified.     

Labor supply effects of long‐term care reform in Germany

Many informal caregivers are of working age, facing the double burden of providing care and working. Negative labor supply effects can severely reduce the comparative cost advantage of informal over formal care arrangements. When designing long‐term care (LTC) policies, it is crucial to understand the effects not only on health outcomes but also on labor supply behavior of informal caregivers. We evaluate labor supply reactions to the introduction of the German long‐term care insurance in 1995 using a difference‐in‐differences approach. The long‐term care insurance changes the caregivers' trade‐off between labor supply and care provision. The aim of the reform was to strengthen informal care arrangements. We find a strong negative labor supply effect for men but not for women. We argue that the LTC benefits increased incentives for older men to leave the labor market. The results reveal a trade‐off for policy makers that is important for future reforms—in particular for countries that mainly base their LTC system on informal care.     

The role of collective efficacy in long‐term condition management: A metasynthesis

Social networks have been found to have a valuable role in supporting the management of long‐term conditions. However, the focus on the quality and how well self‐management interventions work focus on individualised behavioural outcomes such as self‐efficacy and there is a need for understanding that focuses on the role of wider collective processes in self‐management support. Collective efficacy presents a potentially useful candidate concept in the development and understanding of self‐management support interventions. To date it has mainly been utilised in the context of organisations and neighbourhoods related to social phenomena such as community cohesion. Drawing on Bandura's original theorisation this meta‐synthesis explores how studies of collective efficacy might illuminate collective elements operating within the personal communities of people with long‐term conditions. A qualitative meta‐synthesis was undertaken. Studies published between 1998 and 2018 that examined collective efficacy in relation to health and well‐being using qualitative and mixed methods was eligible for inclusion. Timing of engagement with others, building trust in the group, and legitimising ongoing engagement with the group arised as central elements of collective efficacy. The two themes forming third order constructs were related to the presence of continuous interaction and ongoing relational work between members of the group. Collective efficacy can develop and be sustained over time in a range of situations where individuals may not have intense relationships with one another and have limited commitment and contact with one another. Extending this to the personal communities of people with long‐term conditions it may be the case that collective efficacy enables a number of engagement opportunities which can be oriented towards assisting with support from networks over a sustained length of time. This may include negotiating acceptable connections to resources and activities which in turn may help change existing practice in ways that improve long‐term condition management.     

Developing biographies: the experiences of children,young people and their parents of living with a long‐term condition

This article reports on data from a qualitative interview study that sought to understand the experiences, choices and actions of children and young people undergoing surgery for a long‐term condition and that of their parents. Using the concept of biography the article examines how the biographies of children, young people and their parents can be influenced by surgery and the ongoing management of a long‐term continence condition. This article challenges previous work that characterises the presence of a condition from birth as a continuous and normal part of the illness experiences of these patients. Although this may be the case in some instances, children, young people and their parents can experience diverse and changing experiences associated with ongoing condition management as well as surgery. Biographical continuity, enrichment and disruption are all relevant concepts for such patients living with a long‐term continence condition. These can be influenced by their previous experiences of their condition, their expectations, and dynamics with parents, including changes associated with development and the increasing independence of young people.     

Dignity and the capabilities approach in long‐term care for older people

The ageing populations of the Western world present a wide range of economic, social, and cultural implications, and given the challenges posed by deteriorating maintenance ratios, the scenario is somewhat worrying. In this paper, I investigate whether Martha C. Nussbaum's capabilities approach could secure dignity for older people in long‐term care, despite the per capita decreases in resources. My key research question asks, ‘What implications does Nussbaum's list of central human capabilities have for practical social care?’ My methodology combines Nussbaum's list with ethnographic data gathered from a Finnish sheltered home for older people. On the basis of this study, it seems that the capabilities approach is a plausible framework for the ethics of care because it highlights differences in the ability to function and thus differences in opportunities to pursue a good life. The ideas presented in this article could assist social policy planners and executives in creating policies and practices that help old people to maintain their dignity until the end of their days.