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.     

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.     

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.     

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.     

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.     

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.     

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.     

Participation in voluntary and community organisations in the United Kingdom and the influences on the self‐management of long‐term conditions

Voluntary and community organisations (VCOs) have health benefits for those who attend and are viewed as having the potential to support long‐term condition management. However, existing community‐level understandings of participation do not explain the involvement with VCOs at an individual level, or the nature of support, which may elicit health benefits. Framing active participation as ‘doing and experiencing’, the aim of this qualitative study was to explore why people with long‐term vascular conditions join VCOs, maintain their membership and what prevents participation. Twenty participants, self‐diagnosed as having diabetes, chronic heart disease or chronic kidney disease, were purposefully sampled and recruited from a range of VCOs in the North West of England identified from a mapping of local organisations. In semi‐structured interviews, we explored the nature of their participation. Analysis was thematic and iterative involving a continual reflection on the data. People gave various reasons for joining groups. These included health and well‐being, the need for social contact and pursuing a particular hobby. Barriers to participation included temporal and spatial barriers and those associated with group dynamics. Members maintained their membership on the basis of an identity and sense of belonging to the group, developing close relationships within it and the availability of support and trust. Participants joined community groups often in response to a health‐related event. Our findings demonstrate the ways in which the social contact associated with continued participation in VCOs is seen as helping with long‐term condition management. Interventions designed at improving chronic illness management might usefully consider the role of VCOs.     

Can videoconferencing affect older people's engagement and perception of their social support in long‐term conditions management: a social network analysis from the Telehealth Literacy Project

Social support is a key component in managing long‐term conditions. As people age in their homes, there is a greater risk of social isolation, which can be ameliorated by informal support networks. This study examined the relationship between changes in social support networks for older people living in a regional area following weekly videoconference groups delivered to the home. Between February and June 2014, we delivered 44 weekly group meetings via videoconference to participants in a regional town in Australia. The meetings provided participants with education and an opportunity to discuss health issues and connect with others in similar circumstances. An uncontrolled, pre‐post‐test methodology was employed. A social network tool was completed by 45 (87%) participants either pre‐ or post‐intervention, of which 24 (46%) participants completed the tool pre‐ and post‐intervention. In addition, 14 semi‐structured interviews and 4 focus groups were conducted. Following the intervention, participants identified increased membership of their social networks, although they did not identify individuals from the weekly videoconference groups. The most important social support networks remained the same pre‐ and post‐intervention namely, health professionals, close family and partners. However, post‐intervention participants identified friends and wider family as more important to managing their chronic condition compared to pre‐intervention. Participants derived social support, in particular, companionship, emotional and informational support as well as feeling more engaged with life, from the weekly videoconference meetings. Videoconference education groups delivered into the home can provide social support and enhance self‐management for older people with chronic conditions. They provide the opportunity to develop a virtual social support network containing new and diverse social connections.     

Fathers’ contributions to the management of their child’s long‐term medical condition: a narrative review of the literature

Context Fathers’ contributions to the management of long‐term childhood medical conditions are under‐represented in the literature; therefore, the full extent of their involvement is poorly understood by practitioners and researchers, so strategies for promoting their involvement have not yet been fully considered. Objective To review studies of fathers’ actual contributions in a wide range of conditions, the potential to optimize their contribution through additional interventions by health professionals and a direction for future research. Design Narrative review of the literature. Methods CINAHL, Medline, PsychInfo and ERIC databases were searched electronically between the years 1995–2008. The terms adherence, adjustment, child, chronic, compliance, concordance, condition, coping, disease, father, illness, information, long‐term, management/intervention, mother, role, self‐care and treatment were searched for separately and in combination. English language papers reporting primary research were selected and supplemented by hand‐searching reference lists. Thirty‐five papers (arising from 29 studies) met criteria and were selected for narrative review. Results Five themes were identified: (i) the impact of long‐term conditions on fathers’ ability to promote their child’s well‐being, (ii) factors influencing fathers’ involvement in health care, (iii) personal growth/beneficial effects for fathers, (iv) the impact of father’s involvement on family functioning and (v) strategies that increase fathers’ participation in their child’s health care and in research investigating fathers’ participation. Conclusions The review suggests that fathers’ involvement in children’s health care can positively impact on fathers’, mothers’ and children’s well‐being and family functioning. A range of strategies are identified to inform the promotion of fathers’ contributions and future research investigating their input.     

Parents' experiences of living with a child with a long‐term condition: a rapid structured review of the literature

Background

Living with a child with a long‐term condition can result in challenges above usual parenting because of illness‐specific demands. A critical evaluation of research exploring parents'' experiences of living with a child with a long‐term condition is timely because international health policy advocates that patients with long‐term conditions become active collaborators in care decisions.

Methods

A rapid structured review was undertaken (January 1999–December 2009) in accordance with the United Kingdom Centre for Reviews and Dissemination guidance. Three data bases (MEDLINE, CINAHL, PSYCINFO) were searched and also hand searching of the Journal of Advanced Nursing and Child: Care, Health and Development. Primary research studies written in English language describing parents'' experiences of living with a child with a long‐term condition were included. Thematic analysis underpinned data synthesis. Quality appraisal involved assessing each study against predetermined criteria.

Results

Thirty‐four studies met the inclusion criteria. The impact of living with a child with a long‐term condition related to dealing with immediate concerns following the child''s diagnosis and responding to the challenges of integrating the child''s needs into family life. Parents'' perceived they are not always supported in their quest for information and forming effective relationships with health‐care professionals can be stressful. Although having ultimate responsibility for their child''s health can be overwhelming, parents developed considerable expertise in managing their child''s condition.

Conclusion

Parents'' accounts suggest they not always supported in their role as manager for their child''s long‐term condition and their expertise, and contribution to care is not always valued.     

Child health and the possibilities for childcare in a context of poverty and food insecurity: The narratives of parents attending a self‐managed foodbank in Spain

Food insecurity would influence children’s health and development through its effects on nutrition and household stress in the context of broader poverty‐related problems. This study contributes to research regarding the characterisation of food‐insecure households with children under the age of 18. In particular, it highlights the social and institutional aspects which influence and interact with parents’ attempts to protect their children from hunger and destitution. In this study, we document some aspects of the harsh realities faced by mothers and fathers with children under the age of 18 living in poverty who attended a self‐organised foodbank in the city of Madrid in 2015. We used a qualitative methodology consisting of 7 months of participant observation and the conduction of 15 in‐depth interviews. This study shows how the possibilities for the meaningful protection of children in food‐insecure households can be influenced by parental coping strategies, community resources and availability and accessibility to public help. Foodbanks can help reduce both household hunger (although not meeting all nutritional requirements) and parental psychosocial distress, which might support parents to better protect their children. In particular, self‐managed foodbanks appear to help parents cope with emotional distress by reducing feelings of powerlessness and self‐blame through their active involvement, and thanks to the collective caring that occurs between members. Public services are of special relevance, since their absence or an active institutional discrimination has been shown to further damage impoverished households with children. We suggest that public policies in Spain are revised and reinforced to enable a more genuine protection of children and their families living under severe deprivation, and to prevent life‐long damage. Public institutions could assume that people attending a foodbank are living in severe poverty and need access to adequate and supportive public resources to address it.     

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.     

Learning from people with long‐term conditions: new insights for governance in primary healthcare

The introduction of top‐down centrally driven solutions to governance of healthcare, at the same time as increasing policy emphasis on greater ‘bottom up’ patient and public involvement in all aspects of healthcare, has set up complex tensions for policy implementation and healthcare practice. This paper explores the interplay of these agendas in the context of changes in primary healthcare services provided by the National Health Service in England. Specifically, it looks at service user involvement in a qualitative study of the professional response to changes in the governance and incentives in the care of people with long‐term conditions. Service users influenced and guided the study at local and national levels. Vignettes of patient stories developed by service users informed in‐depth interviews with 56 health and social care professionals engaged in the development of local policies and services for people with complex long‐term illness, and themes generated by cross case analysis were validated through service users. The findings presented here focus on four themes about risk and comparison of professionals' and service users' perspectives of the issues: managing risks/consistent support, the risks of letting go/feeling in control, professional identity/helping people to help themselves, and managing expectations/professionals losing out. In this study, service user involvement added value by validating understandings of governance, framing debates to focus on what matters at the point of care and enabling perspective sharing and interaction. We suggest that more collaborative forms of governance in healthcare that take account of service user perspectives and enable interaction with professional groups could help validate processes of quality assurance and provide motivation for continuous quality improvement. We offer a model for ‘opening up’ collaborative projects to evaluation and critical reflection of the interrelationships between the context, methods and outcomes of service user involvement.     

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.