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.

Influences on indoor environmental trigger remediation uptake for children and young people with asthma: A scoping review.

INTRODUCTION: Children and young people (CYP) with asthma can benefit from reduced exposure to indoor environmental allergens and triggers but may not consistently have avoidance strategies implemented. To inform future interventions to increase trigger and allergen avoidance and enhance asthma control, a greater understanding of the influences on avoidance behaviours is necessary. METHODS: A systematic scoping review was selected to summarize evidence on what influences family uptake of indoor environmental asthma trigger avoidance strategies for CYP with asthma and identify research gaps. Primary studies of any design, including CYP (≤18 years) with asthma, and/or parent-carers, available in English and conducted since 1993, were eligible. Searches included nine databases, hand-searching reference lists and citation searching. FINDINGS: Thirty-three articles were included and are summarized narratively due to heterogeneity. Influences appear complex and multifactorial and include barriers to strategy uptake, health beliefs and personal motivation. Research specifically related to family understanding of allergic sensitisation status and exposure risks, and how these may inform avoidance implementation is required. Patient and public involvement (PPI) was not reported in included articles, although two studies used participatory methods. CONCLUSION: There is limited research on family asthma trigger management, particularly what influences current management behaviours. Variation in families' ability to identify important triggers, understand exposure risk and consistently reduce exposures warrants further exploratory research to explain how families reach avoidance decisions, and what future interventions should aim to address. Further PPI-informed research to address such gaps, could enable theory-based, person-centred interventions to improve the uptake of asthma trigger remediation. PATIENT OR PUBLIC CONTRIBUTION: An asthma-specific PPI group contributed to the decision-making for the funding for the wider project this review sits within. The findings of this scoping review have informed the subsequent phases of the project, and this was discussed with PPI groups (both adult and CYP groups) when proposing the next phases of the project.

Fatalism, faith and fear: A case study of self-care practice among adults with Type 2 diabetes in urban Malaysia.

AIMS AND OBJECTIVES: To explore self-care and self-care support in patients with Type 2 diabetes in urban Malaysia. BACKGROUND: The prevalence of Type 2 diabetes in Malaysia and associated long-term and life-changing complications is increasing. With effective self-care and self-care support, severe complications of the condition can be avoided or reduced. Prior to this study, no evidence existed about Malaysian patients' management of the condition or support for self-care from the healthcare system. DESIGN: A single embedded qualitative case study. METHODS: Semistructured interviews with 18 patients with Type 2 diabetes aged 28-69 years, healthcare professionals (n = 19), observations (n = 13) of clinic appointments from two urban settings in Malaysia and a documentary analysis. Recordings were transcribed verbatim, field notes were made during observations and the data analysed and synthesised within and across case using Framework analysis. FINDINGS: Three main themes explained self-care and self-care support in Malaysia: fatalism, faith and fear. Patients were fatalistic about developing diabetes-they perceived it as inevitable because it is so common in Malaysia. However, faith in God, coupled with fear of the consequences of diabetes, motivated them to engage in self-care practices. The fear was largely induced by diabetes healthcare professionals working in overcrowded clinics, and stretched thinly across the service, who used a direct and uncompromising approach to instil the importance of self-care to avoid severe long-term complications. CONCLUSION: This study provided important insight on how people in Malaysia developed diabetes, their responses to the disease and the approach of healthcare professionals in supporting them to engage with self-care. RELEVANCE TO CLINICAL PRACTICE: Any future development of self-care programmes in Malaysia needs to recognise the factors that motivate patients to self-care and include components that build self-efficacy.

An exploration of how young people and parents use online support in the context of living with cystic fibrosis.

BACKGROUND: There is increasing recognition of the Internet's potential role in providing information and support for people living with long-term conditions. However, how young people and parents use online forms of self-care support in the context of living with childhood chronic illness has been under-researched. OBJECTIVE: To explore how online peer support is used by young people and parents to support self-care in relation to cystic fibrosis (CF). SETTING AND PARTICIPANTS: Online forum for young people and parents based on a CF charity website. A total of 279 individuals participated in the forum during the study. DESIGN: An online ethnographical approach, involving observing, downloading and analysing discussion group postings. All postings made over a random 4-month period were included (151 discussion threads). RESULTS: The online setting enabled a physically disconnected group to connect and create a safe space to collectively share experiences and receive support to manage and live with cystic fibrosis. Participants exchanged experientially derived advice and views on how to manage treatments, emotions, relationships, identity and support from services. While parents sought information and support on managing specific therapies/services and ways of maintaining their child's health, the information and support young people desired appeared to be more directed at how to 'fit' CF into their everyday lives. DISCUSSION AND CONCLUSIONS: Online support groups appear to supplement professional support in relation to self-management. They enable young people and parents to share experiences, feelings and strategies for living with long-term conditions with peers and develop the expertise to empower them in interactions with health-care professionals.

Developing an intervention to promote young people's participation in asthma review consultations with practice nurses.

AIM: The article is a report of a study to develop an evidence-based pre-consultation guide for young people to use prior to an asthma review with a practice nurse. BACKGROUND: The participation of young people aged 13-19 in consultations with health professionals can be limited by the lack of opportunity to learn the appropriate skills in triadic consultations. Evidence-based interventions to promote participation of adults in consultations have been developed but young people's needs have not been specifically addressed. DESIGN: Multiple methods design informed by guidelines for the development of complex interventions. METHODS: A pre-consultation guide for young people was developed in 2007 by application of a model of health behaviour change, development of criteria by an expert panel and in consultation with young people using a nominal group technique. RESULTS: The concepts of the Health Action Process Approach model were applied to the development of criteria underpinning the pre-consultation guide. In the nominal groups young people agreed that they had different needs to other children and adults. The consensus was that the preconsultation guide should include disease-specific information, realistic photographs rather than Clip Art, consistent styles of fonts, bullet points and colours, short words and mature language. Statements and example questions written by young people were included in the evidence-based guide. CONCLUSION: Young people's views can contribute to the development of interventions designed to promote communication in consultations with nurses. There is potential for this approach to be used to develop interventions in primary and secondary care of a range of long-term conditions.

Communication between nurses, children and their parents in asthma review consultations.

AIM AND OBJECTIVE: To examine communication between nurses, children and parents in asthma review consultations. BACKGROUND: Communication is an essential component of asthma care, but there has been little examination of nurses' consultations with children and parents. DESIGN: Observation of communication in consultations examined in the context of the perspectives of parents and nurses. METHOD: Qualitative analysis of audio recordings of nine consultations with nurses by children aged 7-12 years and their parents; and interviews with 18 parents and six nurses. RESULTS: The triadic relationship between child-nurse-parent was constructed from dyads of nurse-parent, nurse-child and parent-child. Both cooperation and conflict were identified in the analysis of interaction in dyads although direct confrontations were minimised or avoided. Conflicts arose from differing beliefs about asthma and its treatment and from different perspectives on the impact of asthma and the goals of treatments, and about the roles of children, parents and practitioners. There was uncertainty about the appropriate role of children in their asthma management. CONCLUSIONS: The dyads of nurse-parent, nurse-child and parent-child each make distinct and important contributions to triadic communication. Personal and task elements of therapeutic alliance are important elements in communication between nurses, children and their parents in asthma review consultations. RELEVANCE TO CLINICAL PRACTICE: Communication is an essential component of children's asthma care. Guidance encourages practitioners to use review consultations to help children and parents to identify areas where they want treatment to have effect and to negotiate personalised action plans with practitioners. There is potential for conflict as well as cooperation. There is a need for more research into nurses' communication with children and parents to provide an evidence base for practice, education and training.

Perceptions of effective self-care support for children and young people with long-term conditions.

AIMS AND OBJECTIVES: To: (1) Examine children's/young people's, parents' and professionals'/workers' perceptions of the effectiveness of different models of self-care support, (2) identify factors that support and inhibit self-care and (3) explore how different models integrate with self-care support provided by other organisations. BACKGROUND: Childhood long-term illness has been largely overlooked in government policy and self-care support under-researched when compared with adults. There is a lack of evidence on which are the most appropriate models and methods to engage young people and their parents in self-care. DESIGN: Case study. METHODS: Case studies of six different models of self-care support were conducted using multiple methods of data collection in 2009. Semi-structured interviews were conducted with 26 young people, 31 parents and 36 self-care support providers. A sample of self-care support activities was observed and relevant documents reviewed. Data were analysed using the Framework approach. RESULTS: The effectiveness of self-care support projects was defined in relation to four dimensions - providing a sense of community, promoting independence and confidence, developing knowledge and skills and engaging children/young people. Self-care support provided by schools appeared to be variable with some participants experiencing barriers to self-management and inclusion. Participants self-referred themselves to self-care support projects, and there was a lack of integration between some projects and other forms self-care support. CONCLUSION: This study adds to knowledge by identifying four dimensions that are perceived to be central to effective self-care support and the contextual factors that appear to influence access and experiences of self-care support. RELEVANCE TO CLINICAL PRACTICE: Study findings can inform the development of self-care support programmes to meet the needs of individuals, families and communities. In addition, the findings suggest that healthcare professionals need to support schools if young people with long-term conditions are to have the same educational and social opportunities as their peers.

Ethical challenges of conducting health research in UK school setting.

This paper offers guidance for novice nurse researchers on the ethical and methodological challenges of conducting health research in high school settings. Over the course of two studies in UK high schools with students aged 11-16 years, the authors encountered common ethical and methodological challenges. This article draws on these studies to build a critique of approaches to health research in school settings. Issues of consent and assent, confidentiality and participation can highlight tensions between the expectations of schools and health researchers. In this context, feasible research designs raise complex ethical and methodological questions. Ethical and methodological norms for health research may not be suitable for high school settings. Successful school-based health research designs may need to be flexible and responsive to the social environment of schools.

Self-care support of diet and the gut in the routine care of school-age children with long-term conditions: An integrative review.

There is policy impetus for provision of self-care support (SCS) for children with long-term conditions (LTCs). However, it is not clear what SCS should consist of and how it can be delivered in routine care. This review aimed to synthesise the literature, specifically on SCS of diet and the gut as these components are essential for optimal growth and development and enhanced quality of life. Using an integrative review methodology, studies conducted between January 1990 and July 2020 were systematically identified and methodological quality assessed using the Mixed Methods Appraisal Tool. Twenty-five studies were included. SCS of diet and the gut consisted of support in developing and applying specific knowledge and skills and practical help with incorporating the demands of self-care into everyday life. Key requisites for models of SCS in the context of delivery and uptake in routine care were starting early, keeping it going, being flexible and choosing appropriate outcomes. This review contributes new understanding on the provision of SCS of diet and the gut for school-age children with LTCs, including identification of gaps in the literature and further research needs.

Thinking 'taller': sharing responsibility in the everyday lives of children with asthma.

AIMS: To explore negotiation of responsibilities for asthma self-care between a group of preadolescent children aged 7-12 and their parents/carers and to explore the meaning of responsibility to these children and their adult carers. BACKGROUND: Living with asthma requires the distribution of a range of responsibilities between children and their adult carers, highlighting tensions between protection and promotion of autonomy. Previous studies have identified diverse factors associated with transfer of responsibility but a better understanding is required of the meaning of responsibility in children's lives and how parents and children negotiate responsibilities. DESIGN: The design was qualitative. METHODS: Eighteen child participants aged 7-12 years and their parents/carers participated in open-ended, conversational-style interviews. The framework approach was used to analyse the data and interpretation of data drew upon both feminist epistemology and sociological understandings of children, health and the body which relocate subjective experience at the heart of scientific enquiry. RESULTS: Children demonstrated responsibility by avoiding asthma exacerbators and limiting the effect of asthma on themselves and their parents but there were limitations on children's opportunities to exercise some responsibilities. CONCLUSIONS: It is possible to consider responsibility as the exercise of agency by children rather than simply as compliance with adults' instructions and prescriptions. RELEVANCE TO CLINICAL PRACTICE: Some parents would like more assistance from health professionals in managing the process of increasing independent self-care by children. It is important to maintenance of the health of children with long-term conditions that the distribution of responsibilities between adults and children both ensures children's safety and provides appropriate preparation for independence in adult life. Understanding the process by which parents and children negotiate distribution of responsibilities for long-term conditions could provide a basis for development of interventions to respond to parents' requests for more professional support for managing this process.

Behaviour and emotions of children and young people with congenital heart disease: A literature review.

Congenital heart disease (CHD) is one of the common types of birth defects. Children and young people (CYP) with CHD might exhibit behavioural and emotional changes related to undergoing different medical treatments and hospitalization. Therefore, a literature review was conducted from January 2000 to June 2017 that aimed to understand and evaluate current international literature focusing on CYP's behavioural and emotional status as patients with CHD. A comprehensive search of Medline, PsycINFO and CINAHL databases was undertaken. Eight quantitative studies were reviewed following strict eligibility criteria. The Mixed Methods Appraisal Tool (MMAT) was used to assess the quality of the reviewed studies. Parents provided proxy reports on their children's behaviour and emotions in all studies. Half of the reviewed studies presented the self-perceptions of children who were over seven years old. CYP with CHD exhibited internalizing and externalizing behavioural problems, withdrawal, depression, social, and attention problems. CYP with more severe CHD reported greater behavioural and emotional problems than CYP with less severe CHD. Moreover, younger children developed more problems than older children. Future more depth research using qualitative designs is required to explore the personal views of children younger than seven years old on the impact of CHD on their behaviour and emotions.

How 'The Daily Mile™' works in practice: A process evaluation in a UK primary school.

Over 75% children in the United Kingdom fail to achieve recommended levels of physical activity. Successful implementation of 'The Daily Mile™', a school-based physical activity intervention, could promote activity. We examined factors instrumental to replication and/or wider implementation of 'The Daily Mile' through application of a two phase multi-method process evaluation. Phase one: 75 children (mean age seven years eight months) from one East Midland primary academy trialled the intervention. Data collected were self-report logs, perceived exertion scores and structured observation. Phase two: a sub-sample of 18 stakeholders participated in focus groups which were analysed using framework method. Teachers delivered 'The Daily Mile' on 93.6% of school days. An average of 95.2% of students participated, 94.2% completed recommended 15 minutes, 94.3% to a moderate-to-vigorous level. Three themes emerged in focus groups; embedding 'The Daily Mile' into practice, creating the right physical environment and building relationships/promoting a supportive climate. With systematic organisation and planning, 'The Daily Mile' could emerge as an integrated means of increasing physical activity. A supportive climate and factors that promote resilience are key facilitators. Further research is needed to establish outcomes and cost-effectiveness.

A Feasibility Study Of Administering The Electronic Research And Development Culture Index To The Multidisciplinary Workforce In A UK Teaching Hospital.

PURPOSE: The study aims were: (i) to convert the Research and Development Culture Index (a validated rating instrument for assessing the strength of organizational Research and Development culture) into electronic format (eR&DCI), and (ii) to test the format and assess the feasibility of administering it to the multidisciplinary (allied health professionals, doctors and nurses) workforce in a National Health Service Hospital (NHS) in the United Kingdom (UK) by trialing it with the workforce of the tertiary Children's Hospital within the organization. POPULATION AND METHODS: The eR&DCI was emailed to all professional staff (n=907) in the Children's Hospital. Data were analyzed using IBM SPSS Statistics 22. RESULTS: The eR&DCI was completed by 155 respondents (doctors n=38 (24.52%), nurses n=79 (50.96%) and allied health professionals (AHPs) n=38 (24.52%)). The response rate varied by professional group: responses were received from 79 out of 700 nurses (11%); 38 out of 132 doctors (29%) and 38 out of 76 AHPs (50%). Index scores demonstrated a positive research culture within the multidisciplinary workforce. Survey responses demonstrated differences between the professions related to research training and engagement in formal research activities. CONCLUSION: This is the first study to assess the feasibility of assessing the strength of an organization's multidisciplinary workforce research and development (R&D) culture by surveying that workforce using the eR&DCI. We converted the index to "Online Surveys" and successfully administered it to the entire multidisciplinary workforce in the Children's Hospital. We met our criteria for feasibility: ability to administer the survey and a response rate comparable with similar studies. Uptake could have been increased by also offering the option of the paper-based index for self-administration. Results of the survey are informing delivery of the research strategy in the Children's Hospital. This methodology has potential application in other healthcare contexts.

Ensuring app safety.

Healthcare apps provide health information or can be used to collect data and to support diagnoses and treatments.

Involving young people with mental health problems in improving healthcare.

Latif et al's (2017) paper is a valuable addition to knowledge in this field. It highlights the need to improve the education of registered children's nurses in the care of children and young people (CYP) with physical health problems related to self-harm.

Research essentials.

CONDUCTING RESEARCH to a high standard requires funding and grant applications to funding bodies need a detailed breakdown of justified costs to show value for money. All expenditure must be accounted for, even down to the cost of tea and coffee.

Your path to research.

Undertaking robust research and basing practice on the best available evidence is everyone's responsibility. But career pathways that combine research, clinical practice and teaching are limited, and nurses often have to choose between working primarily in a clinical or an academic setting.

Responding to, and learning from, peer review feedback.

What is peer review in research? Peer review is the process of assessing the scientific quality of a research proposal, research report and/or paper by an independent expert, usually an academic or clinical expert.

Be my guest! Challenges and practical solutions of undertaking interviews with children in the home setting.

This article aims to share critical debate on undertaking interviews with children in the home setting and draws on the authors' extensive research fieldwork. The article focuses on three key processes: planning entry to the child's home, conducting the interviews and exiting the field. In planning entry, we include children's engagement and issues of researcher gender. In conducting the interviews, we consider issues such as the balance of power, the importance of building a rapport, the voluntary nature of consent and the need for a flexible interview structure. Finally, we address exiting from the child's home with sensitivity at the end of the interview and/or research study. Undertaking research in the child's home provides a known and familiar territory for the child, but it means that the researcher faces a number of challenges that require solutions whilst they are a guest in a child's home.