Peer-based Social Support for Young-People with Juvenile Arthritis: Views of Young People, Parents/Carers and Healthcare Professionals within the UK

Purpose: A deeper understanding was sought of what peer-based social support means to young people with juvenile arthritis within the UK and ways in which it could be best provided. Design and Methods: A secondary analysis of underused, descriptively rich data relating to peer-based support contributed by young people with juvenile arthritis, their parents/carers and healthcare professionals from a qualitative study (seeking their views on a potential self-management mobile-app) was carried out using methods suggested by Interpretive Phenomenological Analysis. Results: Peer-based support can provide a new kind of ‘normality’ for young people with juvenile arthritis, including greater understanding, relief, reassurance, shared learning and increased self-efficacy. However, the risk of stigma through this shared identity suggests a need to offer various forms of access including using new electronic media. Conclusion and Implications: The evidence suggests that although desired, the potential social cost of identifying with peers living with juvenile arthritis is influenced by the way such support is provided, which in turn impacts on how readily it will be accessed. This suggests the need to provide various means of accessing peer-based contact, including electronic media, to ensure that young people with juvenile arthritis benefit. Therefore, when promoting and supporting peer-based social support, as far as possible, professionals need to individualise ways in which such support can be accessed because there is no ‘one size fits all’ approach

Emerging communities of child-healthcare practice in the management of long-term conditions such as chronic kidney disease: Qualitative study of parents' accounts

Background: Parents of children and young people with long-term conditions who need to deliver clinical care to their child at home with remote support from hospital-based professionals, often search the internet for care-giving information. However, there is little evidence that the information available online was developed and evaluated with parents or that it acknowledges the communities of practice that exist as parents and healthcare professionals share responsibility for condition management. Methods. The data reported here are part of a wider study that developed and tested a condition-specific, online parent information and support application with children and young people with chronic-kidney disease, parents and professionals. Semi-structured interviews were conducted with 19 fathers and 24 mothers who had recently tested the novel application. Data were analysed using Framework Analysis and the Communities of Practice concept. Results: Evolving communities of child-healthcare practice were identified comprising three components and several sub components: (1) Experiencing (parents making sense of clinical tasks) through Normalising care, Normalising illness, Acceptance & action, Gaining strength from the affected child and Building relationships to formalise a routine; (2) Doing (Parents executing tasks according to their individual skills) illustrated by Developing coping strategies, Importance of parents' efficacy of care and Fear of the child's health failing; and (3) Belonging/Becoming (Parents defining task and group members' worth and creating a personal identity within the community) consisting of Information sharing, Negotiation with health professionals and Achieving expertise in care. Parents also recalled factors affecting the development of their respective communities of healthcare practice; these included Service transition, Poor parent social life, Psycho-social affects, Family chronic illness, Difficulty in learning new procedures, Shielding and avoidance, and Language and cultural barriers. Health care professionals will benefit from using the communities of child-healthcare practice model when they support parents of children with chronic kidney disease. Conclusions: Understanding some of the factors that may influence the development of communities of child-healthcare practice will help professionals to tailor information and support for parents learning to manage their child's healthcare. Our results are potentially transferrable to professionals managing the care of children and young people with other long-term conditions. © 2014 Carolan et al.; licensee BioMed Central Ltd

Multidisciplinary teams, and parents, negotiating common ground in shared-care of children with long-term conditions: A mixed methods study

Background: Limited negotiation around care decisions is believed to undermine collaborative working between parents of children with long-term conditions and professionals, but there is little evidence of how they actually negotiate their respective roles. Using chronic kidney disease as an exemplar this paper reports on a multi-method study of social interaction between multidisciplinary teams and parents as they shared clinical care. Methods. Phases 1 and 2: a telephone survey mapping multidisciplinary teams' parent-educative activities, and qualitative interviews with 112 professionals (Clinical-psychologists, Dietitians, Doctors, Nurses, Play-specialists, Pharmacists, Therapists and Social-workers) exploring their accounts of parent-teaching in the 12 British children's kidney units. Phase 3: six ethnographic case studies in two units involving observations of professional/parent interactions during shared-care, and individual interviews. We used an analytical framework based on concepts drawn from Communities of Practice and Activity Theory. Results: Professionals spoke of the challenge of explaining to each other how they are aware of parents' understanding of clinical knowledge, and described three patterns of parent-educative activity that were common across MDTs: Engaging parents in shared practice; Knowledge exchange and role negotiation, and Promoting common ground. Over time, professionals had developed a shared repertoire of tools to support their negotiations with parents that helped them accomplish common ground during the practice of shared-care. We observed mutual engagement between professionals and parents where a common understanding of the joint enterprise of clinical caring was negotiated. Conclusions: For professionals, making implicit knowledge explicit is important as it can provide them with a language through which to articulate more clearly to each other what is the basis of their intuition-based hunches about parents' support needs, and may help them to negotiate with parents and accelerate parents' learning about shared caring. Our methodology and results are potentially transferrable to shared management of other conditions. © 2013 Swallow et al.; licensee BioMed Central Ltd

A peer-driven community-based doctoral supervisory model: Development from an evaluation of an ethics workshop for health care professionals undertaking research with children

Background: Differing doctoral supervision models currently exist. Three key conceptual supervisory models relevant to doctoral students from within the healthcare professions were identified from a literature review: the 'functional pre-modern' model, the 'team' model and the 'community group' model. However, whilst these models exist, for the most part, supervision remains embedded within home academic institutions. Method and material: (1) An extensive review of the literature was undertaken, drawing on: Australian Education Index, British Education Index, the British Humanities Index, the British Nursing Index, EBSCOHOST EJS and Google™ Scholar; (2) an outcome-oriented evaluation of a workshop delivered to seven current or prospective doctoral candidates from within the health care professions and researching with children and/or young people, concerning the conduct of ethical research was undertaken Results: Five key categories related to 'best things about the day' were identified from a four-item, anonymous questionnaire appraising the day. These concerned: round table discussions, plenary seminars, workshop organisation, value of experiential learning and future workshop opportunities. From these themes an 'innovative' peer-driven, community based model of doctoral supervision was developed that is extrinsic to and complements the supervision provided in students' home academic institutions. Conclusions: The innovative supervisory model developed through an outcome-oriented evaluation of a workshop for doctoral candidates has particular relevance for doctoral students who are healthcare professionals generally and nurses in particular, especially those studying in highly specialised areas where there may be a dearth of subject specific supervisors

Pan-Britain, mixed-methods study of multidisciplinary teams teaching parents to manage children's long-term kidney conditions at home: Study protocol

Background Care of children and young people (children) with long-term kidney conditions is usually managed by multidisciplinary teams. Published guidance recommends that whenever possible children with long-term conditions remain at home, meaning parents may be responsible for performing the majority of clinical care-giving. Multidisciplinary team members, therefore, spend considerable time promoting parents' learning about care-delivery and monitoring care-giving. However, this parent-educative aspect of clinicians' role is rarely articulated in the literature so little evidence exists to inform professionals' parent-teaching interventions. Methods This ongoing study addresses this issue using a combination of quantitative and qualitative methods involving the twelve children's kidney units in England, Scotland and Wales. Phase I involves a survey of multidisciplinary team members' parent-teaching interventions using: i) A telephone-administered questionnaire to determine: the numbers of professionals from different disciplines in each team, the information/skills individual professionals relay to parents and the teaching strategies/interventions they use. Data will be managed using SPSS to produce descriptive statistics ii) Digitally-recorded, qualitative group or individual interviews with multidisciplinary team members to explore their accounts of the parent-teaching component of their role. Interviews will be transcribed anonymously and analysed using Framework Technique. Sampling criteria will be derived from analysis to identify one/two unit(s) for subsequent in-depth study Phase II involves six prospective, ethnographic case-studies of professional-parent interactions during parent-teaching encounters. Parents of six children with a long-term kidney condition will be purposively sampled according to their child's age, diagnosis, ethnicity and the clinical care-giving required; snowball sampling will identify the professionals involved in each case-study. Participants will provide signed consent; data gathering will involve a combination of: minimally-obtrusive observations in the clinical setting and families' homes; de-briefing interviews with participants to obtain views on selected interactions; focussed 'verbatim' field-notes, and case-note reviews. Data gathering will focus on communication between parents and professionals as parents learn care-giving skills and knowledge. Interviews will be digitally recorded and transcribed anonymously. Discussion This study involves an iterative-inductive approach and will provide a unique, detailed insight into the social context in which professionals teach and parents learn; it will inform professionals' parent-educative roles, educational curricula, and health care polic

Parent and adolescent communication with healthcare professionals about Type 1 diabetes management at adolescents’ outpatient clinic appointments

Aim: This study aimed to identify the ways in which adolescents living with Type 1 diabetes and their parents communicate about Type 1 diabetes management with healthcare professionals in a clinical setting. Methods: Twenty‐nine adolescents (aged 11–17 years) and their parents were purposively recruited from two outpatient clinics for non‐participant observations. Outpatient clinic appointments, which consisted of multiple consultations with healthcare professionals, were observed and audio‐recorded. Outpatient clinic appointments were categorized based on the nature and extent of communication by the adolescent and their parent(s) in relation to Type 1 diabetes management activities. Results: Data from 29 outpatient clinic appointments, consisting of a total of 68 observed consultations, were analysed and a continuum consisting of three patterns of communication was identified (parent‐led, collaborative and adolescent‐led). Healthcare professionals should attend to the nature and extent of communication by adolescents and their parents in relation to Type 1 diabetes management activities because parent and adolescent engagement in communication during clinic appointments may also reflect their degree of involvement in daily Type 1 diabetes management. Conclusions: This continuum provides a framework for healthcare professionals to use to identify communication patterns in consultations which in turn may allow healthcare professionals to encourage more effective communication about Type 1 diabetes management from adolescents and their parents in clinic consultations. This may have a positive impact on the sharing of Type 1 diabetes management responsibilities and adolescents’ developing self‐management skills as roles change during this developmental period

Using focused ethnography in paediatric settings to explore professionals' and parents' attitudes towards expertise in managing chronic kidney disease stage 3-5

© 2014 Nightingale et al.; licensee BioMed Central Ltd. Background: Interactions between parents and healthcare professionals are essential when parents of children with chronic conditions are learning to share expertise about clinical care, but limited evidence exists on how they actually interact. This paper discusses the use of focused ethnography in paediatric settings as an effective means of exploring attitudes towards expertise. Methods: The paper draws on repeated observations, interviews and field-notes involving the parents of six children with chronic kidney disease, and 28 healthcare professionals at two, tertiary, children's hospital-based units. Data were analysed using the Framework approach and the concepts of expertise and self-management. Results: Our study highlighted rewards and challenges associated with focused ethnography in this context. Rewards included the ability to gain a richer understanding of the complex phenomena of mutual acknowledgement of expertise that occurs during parent/ healthcare professional interactions. Challenges related to gaining informed consent and ensuring potential participants had an adequate understanding of the purpose of the study. Two dimensions of parental expertise around their child (personal and clinical) were evident in our data. Parents' and professionals' expertise about the child and their condition was acknowledged and exchanged as parents learnt to share clinical-care with the multi-disciplinary team. Healthcare professionals acknowledged parents' need to understand aspects of each of the eight disciplinary knowledge bases relating to their child' s management and recognised parents' expert knowledge of their child, found ways to mobilise this knowledge, and wove parents' expertise into the management plan. Parents spoke of the degree to which their own expert knowledge of their child complemented healthcare professionals' clinical knowledge. However, ambivalence around expertise was evident as both parents and healthcare professionals questioned what the expertise was, and who the expert was. Our discussion focuses on the ways healthcare professionals and parents share expertise around the child's condition as parents take on responsibility for home-based clinical care. Conclusions: Our findings point to focused ethnography being an effective way of capturing new insights into parent and professional interactions in a paediatric setting and mutual acknowledgement of expertise; these insights may help redress the reported limitations of previous, retrospective studies

Desirable Components for a Customized, Home-Based, Digital Care-Management App for Children and Young People With Long-Term, Chronic Conditions: A Qualitative Exploration

Background: Mobile apps for mobile phones and tablet devices are widely used by children and young people aged 0-18 years with long-term health conditions, such as chronic kidney disease (CKD), and their healthy peers for social networking or gaming. They are also poised to become a major source of health guidance. However, app development processes that are coproduced, rigorously developed, and evaluated to provide tailored, condition-specific, practical advice on day-to-day care management are seldom systematic or sufficiently described to enable replication. Furthermore, attempts to extrapolate to the real world are hampered by a poor understanding of the effects of key elements of app components. Therefore, effective and cost-effective novel, digital apps that will effectively and safely support care management are critical and timely. To inform development of such an app for children with CKD, a user requirements-gathering exercise was first needed. Objective: To explore the views of children with CKD, their parents, and health care professionals to inform future development of a child-focused, care-management app. Methods: Using age- and developmentally appropriate methods, we interviewed 36 participants: 5-10-year-olds (n=6), 11-14-year-olds (n=6), 15-18-year-olds (n=5), mothers (n=10), fathers (n=2), and health care professionals (n=7). Data were analyzed using Framework Analysis and behavior change theories. Results: Of the 27 interviews, 19 (70%) interviews were individual and 8 (30%) were joint—5 out of 8 (63%) joint interviews were with a child or young person and their parent, 1 out of 8 (13%) were with a child and both parents, and 2 out of 8 (25%) were with 2 professionals. Three key themes emerged to inform development of a software requirement specification for a future home-based, digital care-management app intervention: (1) Gaps in current online information and support, (2) Difficulties experienced by children with a long-term condition, and (3) Suggestions for a digital care-management app. Reported gaps included the fact that current online information is not usually appropriate for children as it is “dry” and “boring,” could be “scary,” and was either hard to understand or not relevant to individuals’ circumstances. For children, searching online was much less accessible than using a professional-endorsed mobile app. Children also reported difficulty explaining their condition to others, maintaining treatment adherence, coping with feeling isolated, and with trying to live a “normal” life. There was recognition that a developmentally appropriate, CKD-specific app could support the process of explaining the condition to healthy peers, reducing isolation, adhering to care-management plans, and living a “normal” life. Participants recommended a range of media and content to include in a tailored, interactive, age- and developmentally appropriate app. For example, the user would be able to enter their age and diagnosis so that only age-appropriate and condition-specific content is displayed. Conclusions: Future development of a digital app that meets the identified information and support needs and preferences of children with CKD will maximize its utility, thereby augmenting CKD caregiving and optimizing outcomes

Young People’s, Parents’, and Professionals’ Views on Required Components of Mobile Apps to Support Self-Management of Juvenile Arthritis: Qualitative Study

Background: There is growing evidence that supporting self-management of Juvenile Arthritis can benefit both patients and professionals. Young people with Juvenile Arthritis and their healthy peers increasingly use mobile technologies to access information and support in day-to-day life. Therefore, a user-led, rigorously developed and evaluated mobile app could be valuable for facilitating young people’s self-management of Juvenile Arthritis. Objective: The objective of this study was to seek the views of young people with Juvenile Arthritis, their parents or carers, and health care professionals (HCPs) as to what should be included in a mobile app to facilitate young people’s self-management of chronic Juvenile Arthritis. Methods: A qualitative approach was adopted with a purposeful sample of 9 young people aged 10-18 years with Juvenile Arthritis, 8 parents or carers, and 8 HCPs involved in their care. Data were gathered through semi-structured focus group and individual interviews with young people and their parents or carers and HCPs. Interview discussion was facilitated through demonstration of four existing health apps to explore participants’ views on strengths and limitations of these, barriers and facilitators to mobile app use, preferred designs, functionality, levels of interaction, and data sharing arrangements. Data were analyzed using the framework approach. Results: Analysis revealed three interlinked, overarching themes: (1) purpose, (2) components and content, and (3) social support. Despite some differences in emphasis on essential content, general agreement was found between young people with Juvenile Arthritis their parents or carers, and professionals that a mobile app to aid self-management would be useful. Underpinning the themes was a prerequisite that young people are enabled to feel a sense of ownership and control of the app, and that it be an interactive, engaging resource that offers developmentally appropriate information and reminders, as well as enabling them to monitor their symptoms and access social support. Conclusions: Findings justify and pave the way for a future feasibility study into the production and preliminary testing of such an app. This would consider issues such as compatibility with existing technologies, costs, age, and cross-gender appeal as well as resource implications