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Introduction
Skills and Expertise
Publications
Publications (87)
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 responsibili...
Research exploring illness experiences of young people with sickle cell disease (SCD) has, to date, ignored fatigue, despite the distinctive anemic nature of SCD. To examine adolescents with SCD fatigue experiences, we conducted narrative and picture-elicitation interviews with 24 adolescents in Ghana. A grounded theory, “body as a machine,” was co...
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 ter...
Aims
Developing self-management skills is part of growing up for many young people with long-term conditions (LTCs) such as chronic kidney disease (CKD). However, young people can find it challenging to become independent at managing their LTC and there is limited evidence for how health-care professionals (HCPs) can support this process. This stud...
Background
The responsibility for managing a long-term condition such as chronic kidney disease (CKD) typically transfers from parents to their child during adolescence. However, due to difficulties with self-managing their condition, some young people with CKD can experience poor health outcomes. Little is known about how health-care professionals...
In the last three decades, there has been a growing interest in listening to children’s voices in child health research. Ensuring an appropriate level of dialogical engagement with children calls for participatory methods. Auto-driven photo-elicitation interviews (PEIs) are a powerful approach to obtain rich data from children. This article discuss...
Purpose:
This mixed-methods systematic review synthesized findings from studies published between January 1, 2006 and July 31, 2018 on the social inclusion experiences of children with and without disabilities, as viewed from their own perspective, with a focus on how typically developing peers promote social inclusion.
Method:
Forty-five studie...
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. Thoug...
Asset-Based Community Development (ABCD) is seen as a way of tackling the social determinants of health and reducing health inequalities. However, a better understanding of the mechanisms through which ABCD operates, and the environmental and relational conditions within which it is likely to be most effective, could increase its effectiveness at i...
Background
Childhood long‐term conditions are usually diagnosed in infancy or early childhood. Little is known about the particular experiences and needs of young people who receive a chronic illness diagnosis during adolescence or late childhood. This paper will examine this experience in relation to Multiple Sclerosis (MS) which is increasingly b...
The aim of this article is to critically appraise and synthesize research that examines the impact chronic non-specific cough has on children and their families and to highlight gaps within the research. Chronic non-specific cough refers to a persistent cough without a specific diagnosis. While studies have begun to examine the impact on children a...
Asset-Based Community Development (ABCD) appears to be a promising way to supporting people with long-term health problems but there is currently a lack of evidence to support this approach. Taking a realist approach, a review and concept-mapping exercise of ABCD approaches to improve health were conducted with a view to providing a better understa...
Background:
Sickle Cell Disease is the commonest monogenic haemoglobinopathy worldwide. Living with a long-term condition such as sickle cell disease during adolescence constitutes a significant challenge for the key stakeholders due to the combined effects of chronic illness and adolescent development. For adolescents with sickle cell disease to...
Proceedings of SRR
The Society of Research in Rehabilitation (SRR) is the major multidisciplinary rehabilitation research society
in the UK (www.srr.org.uk). Its aim is to advance education and research into all aspects of rehabilitation
medicine and to disseminate the useful results of such research for the public benefit. The SRR runs
two confer...
This article examines the evidence about ‘what works’ in supporting self-care in relation to children or young people with physical and mental health conditions. It is based on two systematic reviews and on research evaluating different self-care support programmes that have been developed in the UK. The authors identify four components for an effe...
Objective
To identify the barriers and facilitators to goal-setting during rehabilitation for stroke and other acquired brain injuries.
Data sources
AMED, Proquest, CINAHL and MEDLINE.
Review methods
Two reviewers independently screened, extracted data and assessed study quality using the Mixed Methods Appraisal Tool and undertook thematic conten...
Background:
There is growing recognition that multiple sclerosis is a possible, albeit uncommon, diagnosis in childhood. However, very little is known about the experiences of families living with childhood multiple sclerosis and this is the first study to explore this in depth.
Objective:
Our objective was to explore the experiences of parents...
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 un...
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. Findings Interaction enablers and interaction barriers were identified in the data. Practit...
Introduction:
Traumatic brain injury (TBI) is the leading cause of death and acquired disability in childhood. Research has demonstrated that TBI can lead to long-term physical, cognitive, emotional and behavioural difficulties for children and parental stress. Less is known about how parents experience a childhood brain injury and their informati...
to identify and critically review the research literature that has examined fathers׳ involvement during labour and birth and their influence on decision making.
the review follows the approach of a narrative review. Systematic searches of electronic databases Social Services Abstract, Sociological Abstracts, ASSIA, CINAHL Medline, Cochrane library,...
Aims Increasing numbers of children and young people are being diagnosed with multiple sclerosis (MS). However, there is a lack of research about young peoples’ and parents’ experiences of living with MS and it is unknown how appropriate current support is for families. This presentation will report the findings from the first UK study that has exp...
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 t...
Children and young people frequently report physical complaints that have no observable physical pathology known as medically unexplained symptoms (MUS). Research suggests that MUS are associated with substantial physical and psychological impairments and may have a negative impact on children's and young people's functional status and well-being i...
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 pe...
To examine children's and parents' experiences of obtaining a diagnosis of paediatric multiple sclerosis (MS) and identify potential facilitators and barriers to early diagnosis.
Qualitative, semi-structured interviews conducted face-to-face in home settings with 31 parents and 21 children and adolescents (8-17 years old) with a clinical diagnosis...
Background:
Transition to adult services and adulthood is now a prospect for young people with life-limiting conditions requiring palliative care. Little is known about their transition experiences or how children's hospices can support a young adult population during/following transition.
Aims:
(1) To examine how young people with life-limiting...
Teachers are supporting an increasing number of pupils with long-term health conditions in mainstream schools. The aim of this literature review was to critically appraise and synthesise research that has examined teachers' perceptions of the key barriers and facilitators to supporting pupils with long-term conditions, teachers' training needs and...
Purpose:
The study aimed to explore the lived experiences of children and young people who use an Electric Powered Indoor/Outdoor wheelchair (EPIOC).
Method:
To allow for the individual lived experiences of the children to be explored, an exploratory study was designed using Interpretative Phenomenological Analysis (IPA). Nine children aged 7-16...
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...
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 regardin...
Types of chronic illness work and questions used in the study.
(DOCX)
Network generating diagram.
(DOCX)
Abstract The study aimed to explore in depth the perspectives of parents about their child's cleft services. Purposive and theoretical sampling produced a diverse sample of mothers and fathers with children aged 20 weeks to 21 years. Parents were recruited from a specialist cleft center in the U.K. Qualitative, in-depth, face-to-face interviews wer...
Background Children's health policy has highlighted the need to develop self-care programmes. However, there is a lack of evidence on which to base the development of such programmes. This paper reviews the published research on the effectiveness of self-care support interventions for children and young people with asthma, cystic fibrosis and diab...
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 ex...
The aim of this study is to explore children's, young people's and parents' pre-operative experiences of continent stoma formation.
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 re...
Little is known about the experiences of parents caring for a child through long-term treatment for cleft lip and/or cleft palate. We conducted in-depth interviews with 35 parents with children between the ages of 20 weeks and 21 years to explore experiences across the treatment program. We analyzed the data using a constructivist grounded theory a...
This review brings together for the first time the existing quantitative and qualitative research evidence about the experiences of parents caring for a child with a cleft. It summarizes salient themes on the emotional, social and service-related experiences of parents and critiques the literature to date, comparing it with wider, selected literatu...
Increasing the effective targeting and promotion of self-care support for long-term conditions requires more of a focus on patient contexts and networks. The aim of this paper is to describe how within a programme of research and implementation, social networks are viewed as being centrally involved in the mobilisation and deployment of resources i...
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.
Large scale comparati...
Aims To exploreservices used by acutely ill children prior to their use of a Children's Community Nursing Team (CCNT); the costs of CCNT and other services used during the CCNT episode of care; the costs of National Health Service (NHS) services to support caring for these children at home; and the actual and potential costs to families of providin...
Hospices are an important component of children's palliative care provision and increasing numbers of children/young people with life-limiting conditions mean that the demand placed on them for support is likely to increase. However, there has been a lack of published research examining how families experience the support provided by children's hos...
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 establ...
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. How...
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 a...
The disabled child population now incorporates a group of children and young people with complex healthcare needs, many of whom are supported by medical devices and technologies. Little is known about their experiences and perspectives, particularly in relation to transitions.
Twenty-eight young people aged between 8 and 19 years old were recruited...
A national study was conducted between 1991 and 1994 to explore and describe the changing role of the nurse teacher following the introduction of Project 2000 pre-registration nursing courses. Multiple methods were used to collect data from a wide variety of respondents (nurse teachers, midwife teachers, clinical nurses, health service managers and...
Recent health service policy in the United Kingdom has emphasized the need to involve local people in health service planning. This paper will describe how local communities were involved in the development of Primary Care Resource Centres. These centres are designed to provide a base for the delivery of a range of health, social welfare and inform...
A group of children with complex health care needs have emerged as a result of medical advances and government policies emphasizing the community as the arena for care. Some of these children remain dependent on the medical technology that enabled them to survive and require care of a complex and intensive nature to be carried out by their parents...
To investigate practical and methodological problems in assessing the quality of care of multiple conditions in general practice.
Sixteen general practices from two socioeconomically diverse regions in the UK.
Quality of care was assessed in 100 randomly selected patient records in each practice using an established set of quality indicators coveri...
The bulk of care in the community is carried out by lay carers. Recent policy initiatives to support them in the United Kingdom are outlined. There remains evidence of significant gaps in support from professional health and social-care workers including community nurses. This paper reports three studies of lay carers: those caring for older people...
To examine the role of Primary Care Groups and Trusts (PCG/T) in relation to nurses working in general practice and community health services.
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 pr...
To assess available data on the numbers of technology-dependent children living at home in the UK and estimate the costs of caring for them.
Data were obtained from all known secondary sources, including surveys of children with specific conditions known to specialist paediatric departments and the database of applicants to the Family Fund Trust. T...
Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses)....
A new group of chronically ill children who are dependent on technology for their survival has emerged as a result of medical advances. Many of these children are being cared for at home by their parents. However, in the UK little is known about the prevalence or the experiences of families caring for technology-dependent children or of the profess...
This paper argues that the interfaces between formal and informal care-giving are changing as a result of two current trends; the increased scope of home-based nursing care and the emphasis on participation both within nursing and in the wider health and social care arenas. These various changes are explored in relation to the provision of intensiv...
Recent medical advances have led to the emergence of a group of chronically ill children who are dependent upon technology for their survival. Many of these children are cared for at home by their parents. This paper presents an overview of the literature that has examined the experiences of families caring for a technology-dependent child at home....
This paper reports on part of a national study that was conducted over a 3-year period (1991-1994). The overall aim of the study was to explore the changing role of the nurse teacher. Multiple methods of data collection were used, including a modified Delphi survey, a case study and telephone interviews. The sample included a wide variety of respon...
Recent health service policy in the United Kingdom has emphasized the need to involve local people in health service planning. This paper will describe how local communities were involved in the development of Primary Care Resource Centres. These centres are designed to provide a base for the delivery of a range of health, social welfare and inform...
This paper presents findings from a national study conducted over a 3-year period (1991-94) which examined the changing role of the nurse teacher. The study used multiple methods to collect data from a wide variety of respondents (nurse teachers, midwife teachers, clinical nurses, health service managers and higher education lecturers). This paper...
A national study was conducted in England over a three-year period (1991-1994) to explore the changing role of the nurse teacher. The study used multiple methods of data collection, including a modified Delphi survey and a series of telephone interviews. A wide variety of respondents (nurse teachers, midwife teachers, clinical nurses, health servic...
The research described in this chapter was undertaken in part fulfilment for a Master of Science degree at the University of Manchester and was completely self-funded. I spent six months full-time planning the research, conducting the interviews and analysing the data (and of course another two years writing up the study). My interest in the area a...