Challenges and recommendations for advancing respite care for families of children and youth with special health care needs: A qualitative exploration.

Introduction: Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems.

Respite care: qualitative arts-based findings on the perspectives and experiences of families of children and youth with special healthcare needs residing in Manitoba, Canada.

Objectives: Respite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of families' respite experiences who reside in Canada. We sought to understand experiences of the use of respite services by families with CYSHCN with the aim to help improve respite services.

Self-management interventions for children and young people with sickle cell disease: A systematic review.

Background: Increasing numbers of interventions are being developed to support self-management for children and young people (CYP) with sickle cell disease (SCD), but no systematic review has systematically synthesized this evidence regarding their characteristics, effectiveness, acceptability and feasibility for all published intervention types.

Methods: The Joanna Briggs Institute guidelines for mixed-method reviews were followed. A systematic search of eight databases and key journals was conducted from their inception to November 2021.

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.

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.

Qualitative Observational Research in the Intensive Care Setting: A Personal Reflection on Navigating Ethical and Methodological Issues.

The aim of this theoretical paper is to critically reflect on the ethical and methodological issues that arose during a study that observed nurses' care-giving in an intensive care unit setting. The authors critically discuss the methodological and ethical issues as well as the practical realities that were encountered when evaluating a complex intervention using unstructured qualitative observations. We describe the process with negotiating access and entering into the clinical field.

Patient safety in marginalised groups: a narrative scoping review.

Background: Marginalised groups ('populations outside of mainstream society') experience severe health inequities, as well as increased risk of experiencing patient safety incidents. To date however no review exists to identify, map and analyse the literature in this area in order to understand 1) which marginalised groups have been studied in terms of patient safety research, 2) what the particular patient safety issues are for such groups and 3) what contributes to or is associated with these safety issues arising.

Methods: Scoping review.

When technology enters the home - a systematic and integrative review examining the influence of technology on the meaning of home.

Aim: To analyse and synthesise the research that has investigated the experience of home in relation to home mechanical ventilation (HMV).

Method: Systematic integrative review. Four electronic databases (CINAHL, PubMed, Scopus and ISI Web of Knowledge) were searched between January 2010 and April 2017 as well as reference lists of included studies.

How a moderated online discussion forum facilitates support for young people with eating disorders.

Introduction: Young people with eating disorders are at risk of harm to their social, emotional and physical development and life chances. Although they can be reluctant to seek help, they may access social media for information, advice or support. The relationship between social media and youth well-being is an emotive subject, but not clearly understood.

Transferring young people with cystic fibrosis to adult care.

Aim: To explore activities, interactions and behaviours during the first appointment in adult care for young people with cystic fibrosis.

Method: Observational data were collected at 12 first appointments. Framework analysis was applied to written field notes.

Hidden caring, hidden carers? Exploring the experience of carers for people with long-term conditions.

Informal carers make a significant contribution to illness management in communities, but many struggle to access support and remain 'hidden carers'. We aimed to explore how carers of people with common long-term conditions (LTCs, such as coronary heart disease or kidney disease) conceptualised their caring, and whether they struggled to identify themselves with the term 'carer' or access for support. We conducted semi-structured interviews with 19 informal carers of people with LTCs recruited from local support groups.

Developing biographies: the experiences of children, young people and their parents of living with a long-term condition.

This article reports on data from a qualitative interview study that sought to understand the experiences, choices and actions of children and young people undergoing surgery for a long-term condition and that of their parents. Using the concept of biography the article examines how the biographies of children, young people and their parents can be influenced by surgery and the ongoing management of a long-term continence condition. This article challenges previous work that characterises the presence of a condition from birth as a continuous and normal part of the illness experiences of these patients.

Social networks, the 'work' and work force of chronic illness self-management: a survey analysis of personal communities.

Self-management support forms a central aspect of chronic Illness management nationally and globally. Evidence for the success of self-management support has mainly focussed on individually-centred outcomes of behavioural change. While it is recognised that social network members play an important role there is currently a gap in knowledge regarding who provides what type of support and under what circumstances.

Liminality and transfer to adult services: a qualitative investigation involving young people with cystic fibrosis.

Background: Moving to adult care can be challenging for adolescents with a long-term condition; if not managed well it may result in non-adherence, failure to attend appointments and a decline in health post-transfer. Life expectancy for those with cystic fibrosis has improved considerably in recent decades. This patient group was selected as an exemplar for thinking about the movement of care from paediatric to adult services.

A qualitative study of the pre-operative preparation of children, young people and their parents' for planned continence surgery: experiences and expectations.

Aim: The aim of this study is to explore children's, young people's and parents' pre-operative experiences of continent stoma formation.

Background: Current research investigating continent stoma surgery focuses on surgical outcomes including complication rates, adherence to management regimes, self-management practices and levels of continence achieved. Despite reports of pre-operative anxiety in families undergoing continent stoma surgery, there has been a lack of research exploring pre-operative experiences, information needs or decision-making processes in this group.

Integrating telecare for chronic disease management in the community: what needs to be done?

Background: Telecare could greatly facilitate chronic disease management in the community, but despite government promotion and positive demonstrations its implementation has been limited. This study aimed to identify factors inhibiting the implementation and integration of telecare systems for chronic disease management in the community.

Methods: Large scale comparative study employing qualitative data collection techniques: semi-structured interviews with key informants, task-groups, and workshops; framework analysis of qualitative data informed by Normalization Process Theory.

Established users and the making of telecare work in long term condition management: implications for health policy.

Increasingly policy for long term condition management is focussing on new technologies. Telecare is viewed as a means of making services more responsive, equitable, cost and clinically-effective and able to play a central part in mediating between service users, professionals, and service providers. It has also been identified as helping to establish patient self-management for long term conditions.

The role of information in supporting self-care in vascular conditions: a conceptual and empirical review.

Self-care has the potential to make a significant contribution to vascular conditions, but engagement with self-care support has been limited. Lack of relevant information is highlighted by patients and policy-makers as an important barrier to effective self-care, and information provides a potentially efficient platform for changing behaviour. However, work within the social sciences has generally seen information as a necessary but insufficient driver of health behaviours.

Social networks, social capital and chronic illness self-management: a realist review.

Background: Existing literature on the design of interventions and health policy about self-management have tended to focus on individual-centred definitions of self-care and there is growing recognition of the need to extend consideration beyond individual factors, which determine self-care, to examine wider influences such as the health service, the family and the wider social context.

Aims: To explore the theoretical and empirical links between social networks, social capital and the self-care practices associated with chronic illness work and management in the context of people's everyday lives.

Method: A realist review method was used to search and appraise relevant quantitative and qualitative literature.

Primary care groups and trusts: a threat or an opportunity for the development of community-based nursing in England.

Aims Of The Study: To examine the role of Primary Care Groups and Trusts (PCG/T) in relation to nurses working in general practice and community health services.

Background: Over the past two decades there have been rapid changes in the numbers and roles of nurses working in primary care and community based settings. The establishment of Primary Care Groups offers health care professionals, including nurses, the chance to develop local primary care services and to integrate community and primary care nursing.