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

Abstract 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.


| INTRODUCTION
Many long-term conditions (LTCs) in children, such as eczema, asthma, diabetes and epilepsy, require a high level of self-management by parents/carers and older children. Fluctuations in disease severity mean often complex treatment regimens must be adjusted daily, without reference to health-care professionals (HCPs). [1][2][3][4] It is therefore unsurprising that non-adherence is the most common reason for treatment failure in the paediatric population. 5 Written action plans (WAPs) have been advocated to guide parent/ carer (hereafter referred to as "carers") decision-making and support selfmanagement. They are especially promoted in school settings to improve the safety of children at risk of emergencies, such as a seizure or hypoglycaemia. 4,6,7 WAPs exist in many formats but essentially refer to a set of written instructions, which are individualized to the patient and state how to recognize and respond to changes. 8 They are usually agreed between the carer and the HCP, and held by the carer. The strongest evidence base supporting the use of WAPs is in asthma. 9,10 However, we have a limited understanding of how WAPs "work" and what aspects of their use are important for successful implementation. Despite their apparent effectiveness in asthma and recommendation in guidelines, WAPs remain under-used by carers and under-promoted by HCPs. [11][12][13][14] To guide the development and implementation of WAPs in other childhood LTCs, we sought to review and synthesize existing qualitative evidence about the design and use of WAPs in this population, seeking to answer the following questions: 1. What is their value and utility for various stakeholders including children, carers, HCPs and school staff?

2.
What aspects of WAPs constitute their "active ingredients"?

What facilitates and hinders their implementation?
4. What role could they play in the management of diseases other than asthma?

| METHODS
The study protocol was registered with PROSPERO (CRD42015023818) and we have observed the ENTREQ guidelines 15 on reporting the synthesis of qualitative research. There were three key stages: systematic search; critical appraisal and synthesis informed by normalisation process theory (NPT). 16

| Systematic search
We aimed to identify published qualitative papers with a focus on the views and opinions of any stakeholder on WAPs in the management of childhood LTCs. MeSH headings as well as text words were used in searches which, in summary, combined the following concepts: "children" AND "long-term conditions" (including specific diagnoses such as diabetes) AND "written action plans" OR "self-management" AND "qualitative research." We searched five databases (Medline, EMBASE, CiNAHL, PsycInfo, Web of science) from inception to May 2015. Google and Google Scholar were also searched more informally. We examined reference lists of all potentially relevant papers and contacted the corresponding authors of all included papers for suggestions of any further relevant publications.
Two reviewers screened all abstracts (AW and MR/AM) and read the selected full text papers (AW and MR). To be included, studies had to be qualitative in data generation, analysis and reporting; and have a focus on individualized action plans in children aged 0-12 years (although studies in school settings where no specific age or school year range was stated were included). Discrepancies were resolved through discussion and reasons for exclusion were documented. emerging themes. In keeping with our thematic approach, we adopted a realist stance, that is that our findings should represent an external reality that would inform future intervention development in this field.

| Literature search and quality appraisal
After removal of duplicate publications, we screened 3473 abstracts and read the full text of 53 papers (see Figure 1). We contacted the authors of four studies comprising children and adults, [20][21][22][23] where the data were not clearly attributable to children, but none replied so these papers were excluded. Nine papers 24-32 met our inclusion criteria (see Table 2): four papers were judged to be key, 24

| Characteristics of included papers
The characteristics of the nine included studies are summarized in  25,29 two studies HCPs, 28,30 and two studies mixed stakeholder groups of homeless parents and shelter staff 26 and parents, school nurses, school personnel and clinic health professionals. 27 Six studies were conducted in the USA, including all of the studies in school settings/incorporating the views of school nurses. There was one study each from Australia, France and Singapore.

| Study themes
We identified five themes that cut across the NPT categories: fear and confidence; legitimization and authority to act; valuing and using WAPs; being on the same page-the need for a "liveable" document; and format and content. Table 3 summaries the contribution of each study to these themes, but not the richness of data per theme. 33 Unless otherwise stated, all quotes refer to stakeholders talking about children with asthma.

| Fear and confidence
WAPs can help alleviate parental worry and boost their confidence in looking after their children. Parents across the studies described how having a WAP gave them reassurance and confidence as managers of their child's illness: 24

| Authority and legitimacy
Confidence to act was closely linked to feelings of responsibility and authority. WAPs may give people the authority to act and to share information about the child. This theme was particularly prominent amongst the studies conducted in school settings, 25,27,29 possibly because of the responsibility that schools have for their students. Teachers liked that a WAP identified students with asthma and gave credibility to a student's symptoms. The power of WAPs to give credibility to a child's symptoms was also a view expressed by parents who feared "that teachers did not always "believe" their child was having a problem and just wanted out of class" (p. 888). 27 Some parents wanted to formalize the school's authority and responsibility, which indicates that they believed that

| Valuing and using WAPs
Studies identified several reasons that determined the value and use of the WAP to parents: clarity of instructions or fit to the parents' experience; 32 parental familiarity with their child's illness; 24,26 and perceptions of child's self-reliance. 27 Tan et al 32  In contrast, some parents expressed confidence in managing their child's condition. As parents' familiarity with their child's asthma increased, they no longer felt they needed a WAP. 24 Caregivers who possessed written instructions but no longer used them felt that the WAP was not relevant because "they knew what to do," had "familiarity with the plan," or because of "knowing their child" (p. 144). 24 None of the studies representing the views of school staff showed that school nurses and teachers would also become familiar to the extent that they no longer required or wanted WAPs for their students.
Physicians did not always see the additional usefulness of a WAP to information leaflets and so had failed to complete one in the first place. When asked whether they would use an eczema WAP, paediatric dermatologists indicated that they relied on standard patient infor- A concern shared by school and shelter staff was that parents might not pass a copy of a WAP onto them, 26,27 and "chasing" a WAP can take considerable effort and time: Every year you know you will have to call over and over to get the asthma action plan in and all the paperwork filled out.
(School nurse, p. 887) 27 Egginton et al, 27 who looked at WAP use in school settings, but included the wider context of parents and HCPs, found that all stakeholders favoured the WAP being passed directly from clinic to school.
School nurses in one US study 27 said they sometimes become more familiar with a child's asthma than the child's parents or physician and often identify when the WAP no longer matches the child's requirements.

Can the AAP be a liveable document? Where it's kind of
give and take and we can say "this isn't working," or "something has got to change." (School nurse, p 888) 27

| Form and content
Five studies 27-30 specifically reported on the desired format and content of WAPs. Two studies on eczema focused on the opinions of paediatricians on form and content. 28,30

| Format
Carers, school staff and HCPs appreciated the "traffic light code" A WAP on a single page, 30 with the potential to be easily displayed on a fridge, 31 were also seen as desirable characteristics.

| Language
Participants said that the language used in WAPs needed to be simple, specific and easily understood by lay people, 27,30  One study highlighted the importance of the WAP to be languageconcordant, that is written in a language the user understands and speaks. A language-concordant WAP can then serve as a tool to reduce communication barriers. 31 The first asthma plan was given in English.

| Pictures
Photographs or drawings are seen as a universal way of communicating. 31 Especially in eczema, they are appreciated for helping to explain levels of severity. 30 "a couple of illustrations of mild vs severe would be helpful", "need some pictures", and "document could use some visuals to break up the text" (Paediatricians and paediatric dermatologists asked to comment on a sample eczema WAP, p.31) 30

| Content
Desired content in a WAP included: usual medication, rescue medication, triggers and allergens, allowed exercises, how to treat exacerbations, when to call for help and a section to give written consent to school staff. 27,29 Specialists had a tendency to criticise the content of a WAP if it was different to their usual practice. 30 One study of an eczema action plan described that the content and format depended on whether the physicians thought the purpose of a WAP to convey information or to aid communication. focused exclusively on school nurses, one on caregivers with limited English, and one on homeless children. Given the lack of more general research in this field, this emphasis on minority groups is surprising.

Some saw the WAP [for eczema] as an information
Physician's views, especially those of doctors working in primary care, are under-represented. Some papers (eg Jones et al 36 ) focusing on this stakeholder group were excluded because they included adults as well as children.
Lastly, the quality and reporting of methods in the included studies were disappointing: three papers were rated as poor quality; and four papers reported free text responses to self-administered questionnaires. The quality appraisal process we adopted did not lead to papers being excluded but helped to ensure that the PQPs did not contribute disproportionately to the analysis.

| Findings in the context of the literature
In their model of care planning, Burt et al 37 suggest that care plans may represent an extension of the medical record, a guide to action, and/or as a contract between patients, providers and the healthcare system. They go on to describe three dimensions: perspective (whether the patient or professional is the "target" of the care plan); scope (the degree to which the plan is focussed on discrete behaviours or broader goals); and network (whether care plans are focussed on the core professional-patient dyad, or a wider care network, for example a multidisciplinary team and/or social networks.
WAPs for conditions such as asthma are professional-centred/ behaviour-focussed, which may be used by people other than the main carers.
While the offer of a WAP may be perceived by patients as an indicator of good care, possession of a WAP does not equate to use. 22,37 Ring et al, 34 who undertook a synthesis of the qualitative literature regarding WAP use in asthma, discuss the variable support for and use of action plans, which resonates with our own findings of variation in WAP usefulness, familiarity and reliance. 38 In further work, 39 Ring et al 39

| CONCLUSIONS
WAPs are complex interventions that require context-specific development, implementation and evaluation. Their role in helping carers self-manage children with LTCs remains an incompletely explored concept. WAPs have different value to the numerous stakeholders at different times. They may have a role to play in reconciling differences between clinicians and carers in their view of LTCs as intermittent or ongoing diseases, as these views may influence carer use of treatments and when they seek HCP review.
Rather than being viewed as a way of substituting for interaction with health-care providers, WAPs are one component of several elements that can be brought together as a means of supporting patient self-management. While individually tailored to a child, the wider process of implementing WAPs needs to be tailored to the context in which they will be used.

| Practice and research implications
Here we relate our findings back to the four initial research questions and identify areas in need of further research (Table 3).
What is the value and utility of WAPs for various stakeholders?
Parents appear to attach greatest value to a WAP at the beginning of their child's "disease journey." Later, when parents have internalized the knowledge, WAPs may become superfluous for their own needs but remain useful when the child is in the care of others less familiar with the child and their illness. By contrast, the value of WAPs to HCPs is poorly understood and the views of older children not considered at all.
What aspects of WAPs constitute their "active ingredient"? To our surprise, this issue was not addressed in any of the included studies and research to delineate the different work involved, including influence of the patient-clinician relationship on its effectiveness, is needed. This should include how the process of completing a WAP with a HCP might influence health-related behaviour and/or their future use of a WAP; and exploring how the use of a WAP might influence not only the HCPs' own confidence in looking after children with a LTC but also their confidence in the ability of carers to look after the children concerned.
What facilitates and hinders their implementation? At a practical level, sharing of a WAP and the work involved in keeping it up to date was identified as one key challenge, especially when it needs to be shared with multiple parties. Otherwise, data on this issue were thin/ absent, partly reflecting the absence of the HCP "voice." And what role could they play in the management of diseases other than asthma? We were surprised that WAPs do not appear to be studied in any other LTCs of childhood condition other than eczema. More work may be needed to identify issues specific to different conditions, but possibly there is enough common ground for WAPs for other diseases to be developed based on the findings of this and other reviews.
In practice, patients will probably agree with much of what we present in this paper, but clinicians are likely to be frustrated that their viewpoint is under-represented and that there is still much uncertainty in this area. Future research needs to build on this existing, if limited, knowledge and explore the views and opinions of all potential stakeholders, within the broader arena in which self-management is advocated and delivered.