Burnout, psychiatric morbidity, and work-related sources of stress in paediatric oncology staff: a review of the literature.

OBJECTIVE: A growing body of research suggests that staff working in adult oncology services are at risk of burnout and psychiatric morbidity, but whether or not these findings can be generalised to staff working in paediatric oncology is questionable. This paper reports the findings of a comprehensive review of the literature on burnout, psychiatric morbidity, and sources of work-related stress in paediatric oncology staff. METHODS: Electronic searches of MEDLINE and PSYCHINFO. This was followed by a screening process, during which papers where checked against inclusion and exclusion criteria, and the quality of study reporting was assessed. Information about the study design and methods was then extracted from each paper so that the methodological quality could be critiqued. RESULTS: Ten studies meeting the review inclusion criteria were identified. No studies were identified which compared paediatric and adult oncology staff. Research on paediatric oncology staff has failed to use the well-established standardised measures of burnout and psychiatric morbidity employed in studies of adult oncology staff. There is some qualitative evidence to suggest paediatric oncology nurses experience a unique, additional set of stressors not encountered by colleagues in adult oncology services. CONCLUSION: The evidence on stress and burnout in paediatric oncology staff is extremely limited. In order to devise appropriate and effective interventions to support staff, we need to have a much better understanding of the level of burnout and psychiatric morbidity experienced by all members of the paediatric oncology multi-disciplinary team, as well as the factors that contribute to these experiences.

Young males' experiences of sperm banking following a cancer diagnosis - a qualitative study.

Existing research into sperm banking by young males following a cancer diagnosis is predominantly quantitative; little is known about personal experiences, psychosocial and attitudinal barriers to it amongst patients and/or professionals, or the later impact of potential or actual subfertility when banking has or has not taken place. This qualitative study used single in-depth interviews with 16 males aged 13 to 20 at diagnosis (16 to 30 years at interview) to report retrospectively on their experiences, concerns and satisfactions. There was support for sperm banking, including among those who declined to bank or failed to do so successfully. Many reported that, when successful, it eased any later fertility-related concerns by offering a possible alternative route to biological fatherhood. There was satisfaction with levels of understanding, recall and decision making, though lack of clarity about consent conditions. Sperm bank professionals were less likely than oncology staff to achieve good rapport. Improvements to consent arrangements, facilities, written information and sharing of results were suggested. Small numbers from minority ethnic or disabled communities meant that any uniqueness in their experiences could not be identified. While some improvements to the process of sperm banking and follow-up can be acted upon with minimal implications, others may be more complex.

Exploring health-related experiences of children and young people with congenital heart disease.

OBJECTIVE: To determine the health-related experiences of children with congenital heart disease. DESIGN: Qualitative, semi-structured interviews. PARTICIPANTS: A purposive sample (N = 35) of children and young people, aged between 8 and 19 years, with a variety of congenital heart conditions recruited from one treatment care centre in the north of England. RESULTS: The main themes identified included: physical limitations of their condition; restrictions; attitudes of others; choices about information; coping with life and privacy. CONCLUSIONS: This study suggests that while many of this sample of children said that they coped well with their condition some children did experience significant impact on their quality of life in several domains. Children and young people identified a need for improved strategies to help them communicate about their condition with peers, schoolteachers and health-care professionals to allow a better understanding of what they are able to achieve.

A simple screening method for determining knowledge of the appropriate levels of activity and risk behaviour in young people with congenital cardiac conditions.

OBJECTIVE: To assess a novel method for assessing risk and providing advice about activity to children and young people with congenital cardiac disease and their parents. DESIGN AND SETTING: Questionnaire survey in outpatient clinics at a tertiary centre dealing with congenital cardiac disease, and 6 peripheral clinics. INTERVENTIONS: Children or their parents completed a brief questionnaire. If this indicated a desire for help, or a serious mismatch between advised and real level of activity, they were telephoned by a physiotherapist. MAIN MEASURES OF OUTCOME: Knowledge about appropriate levels of activity, and identification of the number exercising at an unsafe level, the number seeking help, and the type of help required. RESULTS: 253/258 (98.0%) questionnaires were returned, with 119/253 (47.0%) showing incorrect responses in their belief about their advised level of exercise; 17/253 (6.7%) had potentially dangerous overestimation of exercise. Asked if they wanted advice 93/253 (36.8%) said "yes", 43/253 (17.0%) "maybe", and 117/253 (46.2%) "no". Of those contacted by phone to give advice, 72.7% (56/77) required a single contact and 14.3% (11/77) required an intervention that required more intensive contact lasting from 2 up to 12 weeks. Of the cohort, 3.9% (3/77) were taking part in activities that put them at significant risk. CONCLUSIONS: There is a significant lack of knowledge about appropriate levels of activity, and a desire for further advice, in children and young people with congenital cardiac disease. A few children may be at very significant risk. These needs can be identified, and clinical risk reduced, using a brief self-completed questionnaire combined with telephone follow-up from a suitably knowledgeable physiotherapist.

Key worker services for disabled children: the views of staff.

Provision of 'key workers' for disabled children and their families, working across health, education, and social services, has been recommended in the Children's National Service Framework. This study investigated the views of staff of key worker services concerning the organisation and management of the services. Interviews were carried out with key workers (N=50), managers (N=7) and members of multi-agency steering groups (N=32) from seven key worker services in England and Wales. A response rate of 62% was obtained. Major themes emerging from the interviews were identified, a coding framework was agreed upon, and data were coded using the qualitative data analysis programme Max QDA. Results showed that although the basic aims of the services were the same, they varied widely in the key workers' understanding of their role, the amount of training and support available to key workers, management and multi-agency involvement. These factors were important in staff's views of the services and inform recommendations for models of service.

The development of a new measure of quality of life for children with congenital cardiac disease.

The purpose of the study was to develop a questionnaire measuring health-related R1 quality of life for children and adolescents with congenital heart disease, the ConQol, that would have both clinical and research applications. We describe here the process of construction of a questionnaire, the piloting and the development of a weighted scoring system, and data on the psychometric performance of the measure in a sample of 640 children and young people recruited via 6 regional centres for paediatric cardiology from across the United Kingdom. The ConQol has two versions, one designed for children aged from 8 to 11 years, and the other for young people aged from 12 to 16 years. Initial findings suggest that it is a valid and reliable instrument, is acceptable to respondents, and is simple to administer in both a research and clinical context.

Care and support needs of children and young people with cancer and their parents.

The importance of psychosocial support services for children with cancer and their families is recognised but evaluation of such services is less well developed with little information available about different patterns of provision. This paper provides an overview of psychosocial support children and their families in the UK receive during and after treatment. It reports the results of a postal survey of 303 families, within which parents and children identified their satisfaction with support services and also areas of unmet need. Satisfaction was identified in a range of areas, including medical information and support from nurses and social workers. However, areas of unmet need were also highlighted, especially age appropriate facilities, emotional support and information in different formats. Although British government policy currently seeks to develop standards and guidelines of care throughout the National Health Service, this paper demonstrates that there is still a need to develop psychosocial support services and work towards recently established guidelines in order to ensure that families receive flexible but equitable packages of care and support, wherever treatment is received.

Families' experiences of caring for technology-dependent children: a temporal perspective.

In the present study, families' experiences of caring for a technology-dependent child were examined from a temporal perspective. This involved exploring the multiple 'technological', 'social' and 'natural' rhythms and routines around which the families' lives were variously structured. A purposive sample of 36 families with technology-dependent children who used one or more medical devices on a daily basis was recruited. Devices included feeding pumps, suction machines, dialysis machines and ventilators. Using mainly qualitative methods, children, parents and siblings were interviewed to establish what the care routines involved and how these impacted on family members. The authors found that the rhythms and routines of care varied across the sample, depending on the type and number of devices used, the individual child's needs, and who provided technical care during the day and/or at night at home and in other settings. While the children's health and quality of life benefited from the technology, the time demands of the care routines and lack of compatibility with other social and institutional timeframes had some negative implications for the children and their families, limiting their participation in school, employment and social life in general. The need to use and oversee the use of some medical technologies at night also meant that many parents suffered regular disruption to their sleep. In conclusion, the authors argue that the care of technology-dependent children at home places considerable time demands on families. Families have little or no access to suitably trained carers who can provide technical care required in the home or away from the home to give parents and the whole family a break from caring where required. More trained carers and short-term care provision, better coordination of services and improvements in the design of devices would all help to reduce the negative effects of the care routines on families.

Desired outcomes for children and young people with complex health care needs, and children who do not use speech for communication.

Within recent policies and initiatives, there is a growing emphasis on outcomes-focused practice and user-defined outcomes to ensure that the children and families most at risk of social exclusion have every opportunity to build successful and independent lives. However, we still know little about what children and young people with disabilities consider constitutes a good quality of life. The present paper reports the findings of a qualitative research project that aimed to identify the desires and aspirations of children and young people with complex health care needs (CHNs), as well as those who do not use speech for communication (NS) and their parents. Fifty families participated in this study; 26 families had a child with CHNs and 24 had a child with NS. Semistructured interviews were carried out with 50 parents, 18 children and 17 other informants (teachers and other non-parent carers who knew the child well). A range of visual or non-verbal techniques were used to facilitate interviews with children. The research found that, while children and their parents aspired to the same sort of outcomes as those of non-disabled children, such as to have friends, interests and future independence, the specific meaning they attached to certain outcomes and the way they prioritised aspirations differed. These findings have implications for the ways in which outcomes are defined and measured, and the role of services in achieving these outcomes.

The Golden Freeway: a preliminary evaluation of a pilot study advancing information technology as a social intervention for boys with Duchenne muscular dystrophy and their families.

Established information technology was used in an attempt to reduce social isolation by providing each family who had a child with Duchenne muscular dystrophy with a personal computer, and e-mail and Internet connectivity. Seventy-four of the 88 families in the north of England (i.e. Cumbria, Durham, Northumberland, Teesside, and Tyne and Wear) with a boy with Duchenne muscular dystrophy who was diagnosed before January 2000 had the equipment installed. Evaluations of equipment usage and parental perceptions of the project were carried out at 3 and 12 months post-installation. Results from quantitative and qualitative interviews with parents indicated that benefits accrued to the families and to the boys themselves: family relationships can be extended, and the boys can acquire a degree of independence which, according to parents' views, can boost self-confidence and self-esteem. As hoped, social isolation was felt to have been reduced, and an occupation, interest and enjoyment provided. The greatest use of the computer was for schoolwork with siblings sharing in this. Cost proved to be a problem for a number of families. For the project team, there were unexpected aspects: creating an e-community was more difficult than anticipated, more training was required and not all families would ever use the equipment to its fullest. However, families did emphasise the value of the project as a way of opening the world for their sons.

Professionals' views on the issues and challenges arising from providing a fertility preservation service through sperm banking to teenage males with cancer.

Interviews were undertaken with 22 health and social work professionals. Their analysis was completed using "selective transcription", noting understanding of process, issues and themes, and building a picture against which to consider the analysis of subsequent interviews with teenagers and parents. Professionals were also asked to identify areas for feedback from these participants. This work was part of a larger study of (i) the perceptions of adolescent males and their parents of fertility preservation services following a cancer diagnosis, and (ii) national postal surveys of common practices, areas of variance and issues experienced by professionals in UK regional paediatric oncology centres and licensed assisted conception centres. A large number of concerns were identified, which reflected professionals' difficulties in building and maintaining a relevant, adequate knowledge and skills base given the limited numbers of teenagers offered this service. The lack of appropriate training about the legal and consent frameworks, and the processes involved was also highlighted across all professional groups as was the confusion around professional and legal responsibilities for follow up. Thus, there was considerable professional uncertainty in a number of aspects of this sensitive area of service provision. Consideration needs to be given to the needs for national guidance, for training, support and updating, for liaison between the different health and social care sectors that may be involved, and for appropriate information systems. These need to be in place for each stage of the process, from diagnosis through to eventual discharge from the health system.

Chronically ill adolescents' experiences of communicating with doctors: a qualitative study.

PURPOSE: To explore the experiences of chronically ill adolescents in communicating with health professionals, including the identification of factors which hinder or facilitate their use of health professionals as an information source. METHODS: 63 adolescents (11-16 years) with a chronic condition (cystic fibrosis, diabetes, epilepsy, juvenile chronic arthritis, or Duchenne muscular dystrophy) were interviewed, and subsequently took part in two group discussion meetings with other adolescents of a similar age with the same condition. Data were analyzed using the framework method involving data reduction, data display, and conclusion-drawing and verification. RESULTS: Factors affecting the openness and effectiveness of communication included: duration and frequency of contact; gender; perceived attitudes towards adolescents; the communication skills of the adolescent and health professional; and the presence of parents and medical students/trainee doctors. The type of information needed also affected whether the adolescents felt able to discuss an issue with a health professional. Adolescents were reluctant to raise personal or sensitive issues or to ask questions that revealed poor adherence. A perceived lack of interest in the wider impacts of having a chronic condition on day-to-day life was also a barrier to adolescents discussing difficulties at school and socio-emotional problems. CONCLUSIONS: Communication and information provision are key roles for health professionals, yet this study highlights a population with potentially high levels of information need who are facing considerable barriers to addressing these needs. Steps taken to improve adolescent-health professional communication need to address a range of practical, attitudinal and behavioral factors.

The views of young people with congenital cardiac disease on designing the services for their treatment.

BACKGROUND AND PURPOSE: There is little documented evidence of young people with congenital cardiac disease being consulted as to what help, if any, they really need in relation to their condition. Most research concentrates on the medical aspects of the condition. There are studies of psychological and social functioning, but few have directly sought the opinions of the young people. More recent research has indicated a need for health professionals to develop services to meet both psychosocial and physical needs of young people with congenital cardiac disease. The findings of the recent Kennedy Report support this need. The purpose of this study was to explore the views of young people with a range of congenital cardiac conditions, on what would help them better deal with their condition, and when and how help might be provided. METHODS: This was a qualitative study using semi-structured interviews. We interviewed 16 young people in their own home. Interviews were tape-recorded and transcribed. Analysis was conducted using the "Framework" method. RESULTS: Whilst most of the young people interviewed actively manage their condition, they think more support from others would be beneficial. Issues of activity and communication were cited most often as areas requiring more understanding from people they interact with, for example teachers and peers. The discussion focuses on how health professionals might change or develop their practice to help young people better cope with their condition. CONCLUSIONS: Most of the young people interviewed in this study had developed their own strategies for coping with their condition. Although this is a small study, the young people provided important suggestions as to how health professionals could better develop current services.

The views of parents concerning the planning of services for rehabilitation of families of children with congenital cardiac disease.

BACKGROUND AND PURPOSE: Although much previous research has focused on the medical aspects of congenital cardiac disease, there is a growing body of research which suggests that families may need help and support with the wider issues associated with the medical condition. We have previously ascertained from young people with congenital cardiac disease their views on this subject. The purpose of this study was to obtain the views of their parents about the need for, and shape of, services for rehabilitation. METHODS: This was a qualitative study using semi-structured interviews. We interviewed 17 parents in their own home. Interviews were tape-recorded and transcribed. RESULTS: Parents would welcome more help and support from health professionals to enable them to manage more effectively the condition with their children. Particular areas of concern relate to the information they receive about the condition; communication between themselves and health professionals; establishing safe levels of activity; and managing the condition at school. CONCLUSIONS: This is a small study of the experiences and views of parents, which provides some important information on ways in which health professionals could address the current lack of services for rehabilitation.

Provision of services for rehabilitation of children and adolescents with congenital cardiac disease: a survey of centres for paediatric cardiology in the United Kingdom.

A postal questionnaire survey of the 17 centres for paediatric cardiology in the UK investigated the attitudes of staff towards rehabilitation and the current level of provision. The majority of respondents (82%) believed they should provide rehabilitation for their patients, but only one centre had a programme for rehabilitation. Few respondents (18%) believed they were meeting the needs of their patients' for rehabilitation. Major barriers to providing rehabilitation were funding and the wide geographical catchment areas.

Information that informs rather than alienates families with disabled children: developing a model of good practice.

The importance to families with disabled children of relevant and accessible information about services has been illustrated in numerous studies and was re-emphasised by the Department of Health's 'quality protects' initiative. Indeed, the provision of information and the importance of keeping families informed is frequently viewed as a significant factor within both the concept of empowerment and the facilitation of enabling and participatory processes for service users and their families. However, although there has been considerable research highlighting parents' information needs, there has been significantly less exploration of how parents would actually like to receive this information. This paper seeks to bridge this knowledge gap and also discusses the empowering potential of user-friendly information. Drawing upon data collected from focus group discussions with parents caring for children with a range of disabilities or chronic illnesses, this paper explores how the families of service users would like to receive information. In particular, it examines the criteria by which parents judge the quality of information and their ideas as to what constitutes good practice, especially in terms of how information is presented, its content and the way it is delivered. Using these ideas and criteria, the paper begins to develop a model of good information practice that is both three-dimensional and personally interactive. Indeed, parents' desire for a combination of personal guidance and good-quality information, whether in the form of in-depth booklets or shorter directories, is viewed as being of paramount importance and, furthermore, as having an important empowering potential.

An insight into the experiences of parents with inflammatory bowel disease.

AIMS AND OBJECTIVES: To identify parents' views, both positive and negative on: how inflammatory bowel disease (IBD) affects people in their parenting role; effects parents with IBD have noticed in their children; ways of dealing with any difficulties in parenting; and support needed by parents with IBD. DESIGN: This was a small-scale exploratory study, adopting a qualitative research design. A purposive sample of 19 mothers and five fathers with IBD was recruited through two hospitals and a voluntary group in the north of England. RESEARCH METHODS: Data were collected through a combination of focus groups and interviews, and analysed using the 'framework approach'. FINDINGS: The main positive effect for parents was developing a closer relationship with their children. When parents were experiencing symptoms there were difficulties in caring for young children; problems taking children to and from school, and attending school events; restrictions in social life; irritability and reduced tolerance of children. When in hospital, it was sometimes difficult to arrange for care of young children. These difficulties caused worry and guilt for parents, and a few spoke of periods of depression. Parents noticed that their children seemed caring and understanding of illness, but were also anxious when the parent was ill or in hospital, and reacted with anger or frustration to restrictions in social activities. Strategies commonly used to deal with difficulties were turning to family for support and trying to control symptoms. Support from health professionals was variable. Parents wanted more practical assistance, information for families on the effects of IBD, and support in coping with the condition. Awareness-raising about IBD was considered important within health, social services, education and housing departments. CONCLUSIONS: As a group in regular contact with parents with IBD, health professionals have an important role to play in providing support. Staff should be particularly vigilant towards parents with severe symptoms, mothers of younger children, and those receiving limited help from their families.

The meaning of parental illness to children: the case of inflammatory bowel disease.

BACKGROUND: Research on the impact of parental illness on children is sparse, and it remains unclear what kind of support, if any, families would value. This paper presents findings from the first investigation to explore the experiences of young people who have a parent with inflammatory bowel disease (IBD). DESIGN AND METHODS: This qualitative study involved interviews with 23 young people, aged between six and 20 years, who have a parent with IBD. A range of non-verbal techniques was used to facilitate interviews with young children. Data were analysed using the framework approach. RESULTS: Participants varied in their understanding and perception of their parent's condition and the extent to which they discussed it with family and friends. Some reported being unaffected by their parent's illness. The main negative effects on everyday life were restrictions on social activities, parents being unable to do housework, children having to be well-behaved and parents becoming withdrawn or irritable. Experiences could lead to feelings of sadness, worry, anger and guilt. The few who reported positive effects described spending time with the parent while ill, being allowed to be more independent and being close as a family. Relatives, friends, neighbours, service providers and young people all played a role in helping to manage the situation, and most participants felt that their family did not need additional support. However, some young people would value advice and information regarding the condition and opportunities to meet others in a similar situation. CONCLUSION: IBD is a highly variable condition, with substantial differences in the extent to which it impinges on the lives of family members. In addition to supporting patients, health professionals have an important role to play in offering advice and information to others affected by the illness, including children.

Experiences and support needs of siblings of children with cancer.

The diagnosis and treatment of childhood cancer places considerable demands on family life. Siblings have been shown to be at risk for development of emotional and behavioural problems. However, most studies have relied on parents' reports, and less is known about siblings' own views of their experiences. This paper presents findings from interviews with 94 siblings of children with cancer, at 6 and 18 months after diagnosis of the illness. Results show that, six months after diagnosis, siblings reported a number of problems: loss of attention and status; loss of their own and their families' usual activities and routines; loss of certainty and security; and loss of companionship of the ill child. For many, problems had resolved 18 months after diagnosis, but problems remained or had arisen for some. These were not confined to those whose brothers or sisters had relapsed or continued to have treatment. Supportive relationships were reported to be important resources, providing an opportunity for siblings to express their own feelings and needs, and information about the illness and treatment helped them to understand why family life was disrupted. Positive effects were also apparent: gains in maturity, understanding and compassion, and closer family relationships. The findings point to the need for support for siblings to provide information to help them make sense of the situation; opportunities to express their own feelings and reassurance to avoid fear and guilt; attention to feel valued and maintain self-esteem; and help to keep up their own interests and activities. Attention of parents and professionals in contact with the families was generally paid to the ill child. There is a need for health professionals, particularly those in the family's home community, to take a holistic approach to family support, to ensure that information and support is available to siblings.

Carers' experiences of hospital discharge and continuing care in the community.

This paper presents the findings of a study of carers' perspectives on discharge procedures and continuing care arrangements for adults aged 18-65 with physical and complex disabilities. Interviews were conducted with carers of people discharged from younger disabled units (YDUs) and hospital settings. The emphasis carers place on the need to be informed and involved in the discharge planning process is described, and the adequacy of continuing care arrangements from carers' perspectives is examined. The findings of the study raise issues for policy and practice about carers' needs, vis-à-vis patients, to be included as active participants in the discharge planning process.