Children's behavioural and emotional reactions towards living with congenital heart disease in Saudi Arabia: A grounded theory study.

BACKGROUND: A high incidence of children with congenital heart disease (CHD) was found in Saudi Arabia (SA). International literature reports that children with CHD exhibit behavioural and emotional issues due to experiencing hospitalisation and clinical treatments combined with a dearth of qualitative understanding of the experiences of younger children with CHD. Therefore, the aim was to explore the behaviour and emotions of 4-10-year-olds with CHD in SA through children's accounts of their own experiences and parental proxy reports of children's behaviour and emotions. METHODS: Charmaz's constructivist grounded theory (GT) approach was used. Twenty single semi-structured interviews of 10 child/parent dyads were undertaken at a hospital clinic in SA. Children's interviews were combined with an arts-based approach using drawings, pictures and faces of emotions (emojis). Constant comparison analysis was undertaken. Consolidated Criteria for Reporting Qualitative Research guidelines was followed in reporting this study. FINDINGS: A substantive GT: children's behavioural and emotional reactions towards stressors related to living with CHD was developed and provides new insights into children's and parents' perceptions of the children's behavioural and emotional reactions to living with CHD in SA. The theory proposes that children's reactions to living with CHD relate to medical treatment stressors, sociocultural stressors and physical change stressors. Several further factors influenced children's responses to these stressors. CONCLUSION: Children and parents in SA contributed to a new understanding of the relationship between CHD and children's behavioural and emotional reactions. In addition, findings support the need for early assessment of behaviour and emotions among children with CHD and the application of preventative and supportive measures for the children and their families in SA. PATIENT OR PUBLIC CONTRIBUTION: Before the research commenced, the developmental appropriateness of the proposed arts-based data collection tools was tested with three healthy children aged 6-9 years old; the tools were then revised accordingly before the interviews were undertaken.

Building Family Interventions for Scalability and Impact.

Family nursing researchers are charged with addressing the conceptual and methodological underpinnings of family research when developing family-focused interventions. Step-by-step guidance is needed that integrates current science of intervention development with family science and helps researchers progress from foundational work to experimental work with policy integration. The purpose of this manuscript is to provide pragmatic, evidence-based guidance for advancing family intervention research from foundational work through efficacy testing. Guidance regarding the development of family interventions is presented using the first three of Sidani's five-stage method: (a) foundational work to understand the problem targeted for change; (b) intervention development and assessment of acceptability and feasibility; and (c) efficacy testing. Each stage of family intervention development is described in terms of process, design considerations, and policy and practice implications. Examples are included to emphasize the family lens. This manuscript provides guidance to family scientists for intervention development and implementation to advance family nursing science and inform policy.

Supporting the parent-to-child transfer of self-management responsibility for chronic kidney disease: A qualitative study.

INTRODUCTION: As children with long-term conditions (LTCs) mature, they are usually expected to assume responsibility from their parents for self-management of their condition. Little is known about what supports families with this handover of responsibility, including the role of healthcare professionals (HCPs). This study aimed to explore what supports young people with chronic kidney disease (CKD) to assume self-management responsibility and parents to relinquish control. METHODS: A qualitative study, using a grounded theory approach was conducted. Individual and dyadic interviews and focus groups were carried out with 16 young people aged 13-17 years old with CKD, 13 parents, and 20 HCPs. Participants were recruited from two UK children's renal units. FINDINGS: Building and maintaining trust, fostering positivity, learning from mistakes, forming partnerships and individualized support, facilitated the transfer of self-management responsibility. However, HCPs' focus on developing partnerships with young people meant some parents felt excluded, highlighting uncertainty around whether support should be child- or family-centred. Although tailored support was identified as critical, aspects of local service provision appeared to impact on HCPs' capacity to implement individualized approaches. CONCLUSION: This study has identified what supports the handover of responsibility, and, importantly, HCPs' current, and potential role in helping young people to assume responsibility for managing their LTC. Further research is needed to explore how HCPs' involvement balances child- and family-centred care, and how HCPs can adopt personalized, strengths-based approaches to help ensure the support that families receive is tailored to their individual needs. PATIENT OR PUBLIC CONTRIBUTION: Patient and public involvement was integrated throughout the study, with young adults with CKD and parents who had a child with CKD actively involved in the study's design and delivery.

Nurses' attitudes towards family importance in nursing care across Europe.

AIMS AND OBJECTIVE: To explore differences in nurses' attitudes regarding the importance of family in nursing care and factors associated with nurses' attitudes across 11 European countries. BACKGROUND: Family involvement in healthcare has received attention in many European healthcare systems. Nurses have a unique opportunity to promote family involvement in healthcare; however, their attitudes and beliefs may facilitate or impede this practice. DESIGN: A cross-sectional survey across European countries. METHOD: A broad convenience sample of 8112 nurses across 11 European countries was recruited from October 2017 to December 2019. Data were collected using the Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA) questionnaire. We used the STROBE checklist to report the results. RESULTS: There were significant differences in nurses' attitudes about families' importance in nursing care across Europe. Country was the factor with the strongest association with the total scores of the FINC-NA. Older age, higher level of education, increased years since graduation, having a strategy for the care of families in the workplace, and having experience of illness within one's own family were associated with a higher total FINC-NA score. Being male and working in a hospital or other clinical settings were associated with a lower total FINC-NA score. CONCLUSION: Nurses' attitudes regarding the importance of family in nursing care vary across 11 European countries. This study highlights multiple factors associated with nurses' attitudes. Further research is necessary to gain a deeper understanding of the reasons for nurses' different attitudes and to develop a strong theoretical framework across Europe to support family involvement in patient care. The inclusion of family healthcare programs in the baccalaureate curriculum may improve nurses' attitudes. RELEVANCE FOR CLINICAL PRACTICE: In clinical practice, the focus should be on identifying influencing factors on nurses' attitudes to enhance families' importance in nursing care across Europe.

A Pragmatic Guide to Qualitative Analysis for Pediatric Researchers.

OBJECTIVE: To describe four approaches to qualitative analysis in order to provide a pragmatic, application-oriented guide to their use in research focused on children and their families. METHODS: Four commonly used approaches to qualitative analysis-framework analysis, rapid qualitative analysis, content analysis, and reflexive thematic analysis-are described and compared, including their analytic strategies, tips for use, terminology, and application to a hypothetical example. RESULTS: A pragmatic guide to each method is provided as well as examples of how each analytic approach could be utilized to analyze the same dataset. CONCLUSIONS: A variety of approaches to qualitative analysis are available to both novice and experienced qualitative researchers. The approach selected from the options presented in this article will depend on numerous factors, such as the clinical problem being explored, research context, aims, objectives, research questions, and resources available such as time and funds, and the qualitative expertise of the team.

Shifting responsibilities: A qualitative study of how young people assume responsibility from their parents for self-management of their chronic kidney disease.

INTRODUCTION: The responsibility for managing a long-term condition (LTC) such as chronic kidney disease (CKD) typically transfers from parent to child, as children become older. However, children can find it challenging to become independent at managing their LTC, and evidence for how healthcare professionals (HCPs) support transfer of responsibility is limited. This study aimed to explore how young people with CKD assume responsibility for managing their condition and the HCP's role during this process. METHODS: Sampling, qualitative data collection and analysis were guided by a constructivist grounded theory approach. Individual and dyadic interviews, and focus groups, were conducted with 16 young people aged 13-17 years with CKD, 13 parents and 20 HCPs. FINDINGS: A grounded theory, shifting responsibilities, was developed that provides new insights into how young people's, parents' and HCPs' constructions of the transfer of responsibility differed. These diverse constructions contributed to multiple uncertainties around the role of HCPs, when the process started and was completed and whether the endpoint of the process was young people's self-management or young person-parent shared management. CONCLUSION: Families would benefit from HCP support over a longer timeframe that integrates assuming self-management responsibility with gaining independence in other areas of their lives and focuses on young people 'doing' self-management. PATIENT OR PUBLIC CONTRIBUTION: Patient and public involvement was integrated throughout the study, with young adults with CKD and parents who had a child with CKD actively involved in the study's design and delivery.

Umbrella review of family-focused care interventions supporting families where a family member has a long-term condition.

AIM: The aim of this study was to summarize reviews of family-focused care interventions that support families with a family member with a long-term condition across the life course. DESIGN: Umbrella review. DATA SOURCES: Medline (1946-2019), Cochrane Database of Systematic Reviews (2019), Database of Abstracts of Reviews of Effect and EMBASE (1947-2019), CINAHL (1981-2019), Health Technology Assessment Database (2019) and PsycInfo (1806-2019). REVIEW METHODS: All authors independently undertook title/abstract screening, data extraction and quality appraisal on a cluster of papers, working in groups of two or three to reach a consensus. The AMSTAR tool was used to appraise the quality of the studies and descriptive syntheses were undertaken. RESULTS: Fifteen reviews met the selection criteria. Overall family-focussed care and associated terms were poorly defined. Typically interventions were educational or psychological therapy/counselling with the goal of empowering individuals to manage their condition. There is some evidence that family-focused care interventions can improve clinical/biological health measures and self-care outcomes such as treatment adherence. Multicomponent psychosocial interventions that include cognitive-behavioural therapy, skills training, education and support and are focused on wider family members appear to improve family relationships and martial functioning. CONCLUSION: Long-term conditions have an impact on individual and family health and well-being, yet the impact of family-focused care interventions on family outcomes was overall inconclusive. A better understanding of how family-focused care interventions improve the health and well-being of individuals and their families is needed to promote the inclusion of family-focused care into practice. IMPACT: Supporting people with a long-term condition is a key health and social care priority. Family-focused care interventions have potential to improve the health and well-being of individuals and families, but there is a need to evaluate their clinical and cost-effectiveness. The findings from this review could be used by funding bodies when commissioning research for long-term conditions.

Supporting children and young people to assume responsibility from their parents for the self-management of their long-term condition: An integrative review.

BACKGROUND: Children and young people with long-term conditions (LTCs) are usually dependent on, or share management with, their families and are expected to develop self-management skills as they mature. However, during adolescence, young people can find it challenging to follow prescribed treatment regimens resulting in poor clinical outcomes. Though reviews have looked at children's and parents' experiences of self-management, none have explicitly examined the parent-to-child transfer of self-management responsibility. METHODS: An integrative review was conducted with the aim of exploring the parent-to-child transfer of LTC self-management responsibility, through addressing two questions: (a) How do children assume responsibility from their parents for self-management of their LTC? (b) What influences the parent-to-child transfer of this responsibility? Eight databases were searched for papers published from 1995 to 2017. Methodological quality was assessed; included papers were synthesized to identify themes. RESULTS: Twenty-nine papers were identified. Most papers used qualitative designs and focused on children with diabetes. Participants were predominantly children and/or parents; only two studies included health professionals. Assuming self-management responsibility was viewed as part of normal development but was rarely explored within the context of the child gaining independence in other areas of their life. Children and parents adopted strategies to help the transfer, but there was limited evidence around health professionals' roles and ambivalence around what was helpful. There was a lack of clarity over whether children and parents were aiming for shared management, or self-management, and whether this was a realistic or desired goal for families. Multiple factors such as the child, family, social networks, health professional, and LTC influenced how a child assumed responsibility. CONCLUSIONS: Evidence suggests that the parent-to-child transfer of self-management responsibility is a complex, individualized process. Further research across childhood LTCs is needed to explore children's, parents', and professionals' views on this process and what support families require as responsibilities change.

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.

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.

Collaborating With Parents of Children With Chronic Conditions and Professionals to Design, Develop and Pre-pilot PLAnT (the Parent Learning Needs and Preferences Assessment Tool).

PURPOSE: This study aimed to design, develop and pre-pilot an assessment tool (PLAnT) to identify parents' learning needs and preferences when carrying out home-based clinical care for their child with a chronic condition. DESIGN AND METHODS: A mixed methods, two-phased design was used. Phase 1: a total of 10 parents/carers and 13 professionals from six UK's children's kidney units participated in qualitative interviews. Interview data were used to develop the PLAnT. Eight of these participants subsequently took part in an online survey to refine the PLAnT. Phase 2: thirteen parents were paired with one of nine professionals to undertake a pre-pilot evaluation of PLAnT. Data were analyzed using the Framework approach. RESULTS: A key emergent theme identifying parents' learning needs and preferences was identified. The importance of professionals being aware of parents' learning needs and preferences was recognised. Participants discussed how parents' learning needs and preferences should be identified, including: the purpose for doing this, the process for doing this, and what would the outcome be of identifying parents' needs. CONCLUSIONS: The evidence suggests that asking parents directly about their learning needs and preferences may be the most reliable way for professionals to ascertain how to support individual parents' learning when sharing management of their child's chronic condition. PRACTICE IMPLICATIONS: With the increasing emphasis on parent-professional shared management of childhood chronic conditions, professionals can be guided by PLAnT in their assessment of parents' learning needs and preferences, based on identified barriers and facilitators to parental learning.

An Exploration of Comfort and Discomfort Amongst Children and Young People with Intellectual Disabilities Who Depend on Postural Management Equipment.

BACKGROUND: The natural response to the intrusive bodily sensation is positional change. This study explored how children and young people (CYP) with intellectual disabilities had their comfort needs met when using adaptive positioning equipment. METHODS: Thirteen qualitative case studies were undertaken. A parent, a teacher/key worker and a therapist for each CYP were interviewed, and daily routines were observed, with selective video recording. Single case and cross case analyses were undertaken. RESULTS: Attentive caregivers read the behavioural expressions of the CYP and responded reassuringly, safeguarding them from discomforting experiences. Threats to comfort include the restrictive nature of some equipment accessories, positioning errors and procedural stretching. CONCLUSIONS: The same item of equipment can be both comfortable and uncomfortable. Given the social and interactional world in which the CYP live and learn, it is others who must accept responsibility for ensuring their optimal level of comfort.

Apps and Adolescents: A Systematic Review of Adolescents' Use of Mobile Phone and Tablet Apps That Support Personal Management of Their Chronic or Long-Term Physical Conditions.

BACKGROUND: The prevalence of physical chronic or long-term conditions in adolescents aged 10-24 years is rising. Mobile phone and tablet mobile technologies featuring software program apps are widely used by these adolescents and their healthy peers for social networking or gaming. Apps are also used in health care to support personal condition management and they have considerable potential in this context. There is a growing body of literature on app use in health contexts, thereby making a systematic review of their effectiveness very timely. OBJECTIVE: To systematically review the literature on the effectiveness of mobile apps designed to support adolescents' management of their physical chronic or long-term conditions. METHODS: We conducted a review of the English-language literature published since 2003 in five relevant bibliographical databases using key search terms. Two independent reviewers screened titles and abstracts using data extraction and quality assessment tools. RESULTS: The search returned 1120 hits. Of the 19 eligible full-text papers, four met our review criteria, reporting one pilot randomized controlled trial and three pretest/post-test studies. Samples ranged from 4 to 18 participants, with a combined sample of 46 participants. The apps reported were targeted at type 1 diabetes, asthma, and cancer. Two papers provided data for calculating effect size. Heterogeneity in terms of study design, reported outcomes, follow-up times, participants' ages, and health conditions prevented meta-analyses. There was variation in whether adolescents received guidance in using the app or were solely responsible for navigating the app. Three studies reported some level of patient involvement in app design, development, and/or evaluation. Health professional involvement in the modelling stages of apps was reported in all studies, although it was not always clear whether specific clinical (as opposed to academic) expertise in working with adolescents was represented. The dearth of studies and the small overall sample size emphasizes the need for future studies of the development, evaluation, use, and effectiveness of mobile apps to support adolescents' personal management of their conditions. CONCLUSIONS: A key finding of the review is the paucity of evidence-based apps that exist, in contrast to the thousands of apps available on the app market that are not evidence-based or user or professional informed. Although we aimed to assess the effectiveness of apps, the dearth of studies meeting our criteria meant that we were unable to be conclusive in this regard. Based on the available evidence, apps may be considered feasible health interventions, but more studies involving larger sample sizes, and with patient and health professional input at all stages, are needed to determine apps' acceptability and effectiveness. This review provides valuable findings and paves the way for future rigorous development and evaluation of health apps for adolescents with chronic or long-term conditions.

Involving parents in managing their child's long-term condition-a concept synthesis of family-centered care and partnership-in-care.

UNLABELLED: BACKGROUNG: Fostering effective engagement, collaboration and empowerment are central to supporting parents caring for children with long-term conditions. METHODS: A concept synthesis was undertaken to identify the shared antecedents and attributes underpinning models of family-centered care and partnership-in-care. RESULTS: Thirty studies were reviewed; antecedents of models related to unclear roles, entrenched professional practices, and lack of guidelines supporting their implementation; with central attributes being building trust, listening to parent concerns and valuing parents' knowledge of their child. CONCLUSION: The key attributes are outlined in a practical framework of involvement which may promote parent-professional collaboration for families of children with long-term conditions.

Designing a web-application to support home-based care of childhood CKD stages 3-5: qualitative study of family and professional preferences.

BACKGROUND: There is a lack of online, evidence-based information and resources to support home-based care of childhood CKD stages 3-5. METHODS: Qualitative interviews were undertaken with parents, patients and professionals to explore their views on content of the proposed online parent information and support (OPIS) web-application. Data were analysed using Framework Analysis, guided by the concept of Self-efficacy. RESULTS: 32 parents, 26 patients and 12 professionals were interviewed. All groups wanted an application that explains, demonstrates, and enables parental clinical care-giving, with condition-specific, continously available, reliable, accessible material and a closed communication system to enable contact between families living with CKD. Professionals advocated a regularly updated application to empower parents to make informed health-care decisions. To address these requirements, key web-application components were defined as: (i) Clinical care-giving support (information on treatment regimens, video-learning tools, condition-specific cartoons/puzzles, and a question and answer area) and (ii) Psychosocial support for care-giving (social-networking, case studies, managing stress, and enhancing families' health-care experiences). CONCLUSIONS: Developing a web-application that meets parents' information and support needs will maximise its utility, thereby augmenting parents' self-efficacy for CKD caregiving, and optimising outcomes. Self-efficacy theory provides a schema for how parents' self-efficacy beliefs about management of their child's CKD could potentially be promoted by OPIS.

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

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.

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.

Children and young people's preferences and needs when using health technology to self-manage a long-term condition: a scoping review.

BACKGROUND: The use of patient-facing health technologies to manage long-term conditions (LTCs) is increasing; however, children and young people (CYP) may have preferences about health technologies which they interact or engage with, that influence their decision to use these technologies. AIMS: To identify CYP's reported preferences about health technologies to self-manage LTCs. METHODS: We undertook a scoping review, searching MEDLINE, PsycINFO and CINAHL in July 2021. Searches were limited to papers published between January 2015 and July 2021. We included any health technologies used to manage physical and mental LTCs. Qualitative content analysis of study data was undertaken to categorise data into themes and quantitative data were described and visually represented. We engaged CYP with LTCs to support the review design, interpretation of findings and development of recommendations. RESULTS: 161 journal articles were included, describing preferences of CYP. Most included studies were undertaken in high-income countries. CYP's main preferences and needs were: design and functionality; privacy and sharing; customisation and personalisation of the technology; and interaction options within the technology. CONCLUSIONS: This review highlights important preferences and needs that CYP may have before using technologies to self-manage their LTC. These should be considered when developing technology for this population. Future research should involve CYP throughout the development of the technologies, from identifying their unmet needs through to final design, development, evaluation and implementation of the intervention.

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.