'Swimming against the tide'--the influence of fertility matters on the transition to adulthood or survivorship following adolescent cancer.

Psychosocial research into cancer-related fertility has concentrated on fertility preservation or adult survivors' concerns. This study reports on its hitherto unreported impact over the time from diagnosis to survivorship. Thirty-eight men and women aged<30, diagnosed as teens, were recruited to an exploratory qualitative study. Analysis used the constant comparison method, considered conceptually within a lifespan approach. Four key experiences of managing fertility matters influenced, or were influenced by, the aftermath of cancer treatment: (1) prioritising 'normality' and marginalising fertility; (2) fertility concerns compromising 'normality'; (3) ongoing impairments/health concerns mediating fertility matters; (4) fertility concerns dominating the cancer legacy. Professional and social networks provided few opportunities to ask questions, receive information, process feelings or develop handling strategies. Beliefs about the extent of fertility damage did not necessarily relate to information received. For some, fertility matters affected identity, well-being and life planning as well as reproductive function. This was not restricted to particular ages, life stages, gender or time since treatment ended and was heightened by associated stigma and silence. Opportunities for dialogue should be offered regularly across health and social work disciplines given fertility's psychological and social as well as medical significance.

Male and female experiences of having fertility matters raised alongside a cancer diagnosis during the teenage and young adult years.

Discussion and management of potential reproductive health sequelae of adolescent cancer are essential and challenging components of care for the multidisciplinary team. Despite this, research has been limited to specific experiences (e.g. sperm banking) or fertility-related concerns of adult survivors. This grounded theory study of 38 male and female survivors of adolescent cancer aged 16-30 years drew on in-depth single interviews to map the range of experiences of being advised that treatment might affect fertility. Strong support for being told at around diagnosis was found regardless of gender, age, incapacity or availability of fertility preservation services. Age and life stage appeared less significant for impact than the perceived level of threat to personal and social well-being. Women were more likely to achieve lower levels of comprehension about the physiological impact, to report later distress from lack of fertility preservation services and to revisit more frequently those decisions made by the few offered fertility preservation. Men found decision making about sperm banking straightforward on the whole and reported satisfaction with having the choice regardless of outcome. Findings suggest that young people can cope with this information alongside diagnosis especially when professional and parental support is proportionate to the particular impact on them.

Access to and use of NHS Patient Advice and Liaison Service (PALS): the views of children, young people, parents and PALS staff.

BACKGROUND: The English National Health Service Patient Advice and Liaison Service (PALS) was set up to provide patients and their relatives with a way of obtaining information or expressing concerns about their health care. This study examined children's, young people's and parents' access to and use of PALS, and how this could be improved. METHODS: Qualitative and quantitative methods were used to obtain the views of children, young people, parents and PALS staff, on the inclusiveness of the service. These methods included discussion groups and interviews with 30 young people and 16 parents; a postal survey of PALS users, to which 171 (21%) parents responded; and telephone interviews with 14 PALS staff. The data were analysed using qualitative and quantitative methods, and the views of participants on key topics were examined. RESULTS: Children and young people were found to be low users of PALS, but thought that the service was potentially useful. They and parents and PALS staff all highlighted ways in which access to and use of the service could be improved. Participants' views on the following topics are reported: awareness of PALS existence and role; access to and use of PALS; effectiveness of and satisfaction with PALS; and training of staff. CONCLUSIONS: and recommendations Patient Advice and Liaison Service has not been designed and developed in ways that are fully inclusive of children, young people and parents. Based on their views and experiences, and the suggestions of PALS staff, the authors recommend that access to and use of the service could be improved, increasing awareness of PALS, facilitating access to and use of the service, providing training for PALS staff on dealing with young people and their issues, and developing links between PALS and other organizations that deal with young people and parents.

The costs of key worker support for disabled children and their families.

BACKGROUND: Key workers provide a single point of contact for disabled children and their families, supporting them and facilitating access to other services. Key worker services appear to generate good outcomes for families and provision is encouraged through central government policy. Recent increases in key worker provision have been accompanied by a proliferation of delivery models yet there is very little information on their costs. METHODS: Within a study identifying which service characteristics generate good outcomes for families, unit costs for seven key worker services were estimated. Informed by economic theory, the estimates drew on data from managers, finance departments and other publicly available sources. Data on the frequency and duration of contact with key workers were obtained from families and combined with the service-specific unit costs to arrive at the contact cost per family. The variations in the costs of supporting families were explored. RESULTS: On average, key worker contact with disabled children and their families cost pound 151 over a 3-month period. Contact costs were found to vary with the level of the child's disability and the number of role aspects that key workers performed. This latter variable was associated with improved outcomes. CONCLUSION: The low response rate to the questionnaire and absence of data on the costs of other elements of the families' support packages may limit generalization from this study. Even so, such findings can help inform managers and planners about allocation of their scarce resources. Good-quality services appear to cost more but the relationship between cost, quality and outcomes is not a simple one.

Key worker services for disabled children: what characteristics of services lead to better outcomes for children and families?

BACKGROUND: Research has shown that families of disabled children who have a key worker benefit from this service and recent policy initiatives emphasize the importance of such services. However, research is lacking on which characteristics of key worker schemes for disabled children are related to better outcomes for families. METHODS: A postal questionnaire was completed by 189 parents with disabled children who were receiving a service in seven key worker schemes in England and Wales. Path analysis was used to investigate associations between characteristics of the services and outcomes for families (satisfaction with the service, impact of key worker on quality of life, parent unmet need, child unmet need). RESULTS: The four path models showed that key workers carrying out more aspects of the key worker role, appropriate amounts of contact with key workers, regular training, supervision and peer support for key workers, and having a dedicated service manager and a clear job description for key workers were associated with better outcomes for families. Characteristics of services had only a small impact on child unmet need, suggesting that other aspects of services were affecting child unmet need. CONCLUSIONS: Implications for policy and practice are discussed, including the need for regular training, supervision and peer support for key workers and negotiated time and resources for them to carry out the role. These influence the extent to which key workers carry out all aspects of the key worker's role and their amount of contact with families, which in turn impact on outcomes.

Survey of psychosocial support provided by UK paediatric oncology centres.

AIM: To obtain a comprehensive overview of current patterns of psychosocial support provided by National Health Service (NHS) paediatric oncology treatment centres across the UK. METHODS: A postal questionnaire was sent to co-ordinators in the UK Children's Cancer Study Group (a professional body that is responsible for the organisation of treatment and management of childhood cancer in the UK) in 21 treatment centres and three separate Teenage Cancer Trus units. A range of psychosocial topics were explored, including ratio of staff providing support to patients; facilities provided for children and families; psychosocial support services such as support groups; information provision; and transition support. RESULTS: There were many good areas of support provided by centres, but there was also a lack of standard practices and procedures. All centres employed social workers, play specialists, and paediatric oncology outreach nurses, but patient to staff ratios varied across centres. The poorest staff provision was among psychologists, where patient to staff ratios ranged from 132:1 to 1100:1. Written information was standard practice, while provision of other types of information (audiovisual, online) varied; none of the centres provided audio information specifically for children/young people. CONCLUSION: This variability in practices among centres frequently occurred, as centres rarely had procedures formally agreed or recorded in writing. British government policy currently seeks to develop standards and guidelines of care throughout the National Health Service. This study further demonstrates the importance of standards and the need to agree guidelines for the provision of psychosocial support for children/young people and their families throughout the course of the illness.

Facilitators and barriers for co-ordinated multi-agency services.

BACKGROUND: Greater collaboration between agencies and the need to improve interagency working is a key policy priority. The lack of co-ordinated multi-agency working in children's services has been highlighted in many research studies. Evidence on the facilitators of and barriers to such working and the outcomes for children and families of co-ordinated services is important to inform local developments. METHODS: Literature on multi-agency working was reviewed as part of the evidence gathering to inform the Children's National Service Framework. Searches were mainly concentrated on existing reviews, plus recent studies which included children's services and were not covered by the reviews obtained. RESULTS: There is little evidence on the effectiveness of multi-agency working itself or of different models of such working in producing improved outcomes for children and families. However, reviews of evidence on multi-agency working provide consistent findings on facilitators and barriers, including: clear aims, roles and responsibilities and timetables that are agreed between partners; a multi-agency steering group, commitment at all levels of the organizations involved and good systems of communication and information sharing, including IT systems, are central; support and training for staff in new ways of working is needed. There is some evidence that interprofessional programmes of continuing education can help to remove barriers to joint working. CONCLUSIONS: Existing research provides useful information for organizations developing multi-agency services. However, there is a need for methodologically sound research which investigates the outcomes of different models of multi-agency working in services for children, includes assessment of cost effectiveness, and explores the ways in which the factors identified as facilitating multi-agency working relate to outcomes.

The participation of children and young people in decisions about UK service development.

BACKGROUND: The involvement of children and young people in decisions regarding service development is well supported in government policy and underpinned by the UN Convention on the Rights of the Child. Information on the extent, nature and outcomes of children and young people's participation can inform further development in this area. METHODS: Systematic literature searches, plus contact with professional networks, were used to gather and review evidence on children and young people's participation. RESULTS: There is a rapidly developing body of information describing and analysing innovative practices in this field. However, there is also a smaller, but substantial, amount of evidence demonstrating the limited extent of current involvement. A good deal of guidance is now available about how to promote the involvement of children and young people. However, the basis of this advice is not always clear, and more evidence about children's views and their experience of participation in public decision-making is required. Issues identified as barriers to change included adult attitudes and intransigence, lack of training for key adults, lack of clarity leading to tokenism, the nature of organizations (i.e. their formality, complexity, bureaucracy and internal politics) and the short-term nature of much funding. The evidence suggests that good practice includes a listening culture among staff, clarity, flexibility, adequate resources, skills development and training for staff and participating children and young people, inclusion of marginalized groups, feedback and evaluation. There is only limited evidence that children and young people's involvement in public decision-making leads to more appropriate services, although there is evidence that participating children and young people benefit in terms of personal development and that staff and organizations learn more about their views. CONCLUSIONS: The value of the participation of children and young people in public decision-making is now well accepted, and is recognized in the standards set in the Children's National Service Framework. However, there is an urgent need for internal and external evaluations of children's involvement.

National survey of Patient Advice and Liaison Services (PALS) in England: children, young people and parents' access to and use of PALS.

BACKGROUND: Patient Advice and Liaison Services (PALS) have been set up in the National Health Service (NHS) in England to enable patients and the public to access information and raise issues they are concerned about their health care. The aim of this study was to examine to what extent, and how, PALS have promoted children's, young people's and parents' access to and use of the service. METHODS: A postal questionnaire was sent to PALS in 553 NHS Trusts and Primary Care Trusts (PCTs). PALS in Ambulance Trusts, and Specialist Trusts that were known not to provide services for children and young people, were excluded. RESULTS: Questionnaires were returned by 320 respondents representing 369 trusts - a response rate of 67%. Seventy-seven responses were not valid, giving a final sample of 243 PALS. This included 122 PALS serving PCTs, 101 serving NHS Trusts, 15 serving a mix of both PCTs and NHS Trusts, and five serving children's hospitals. The responses suggest that, to date, most PALS have been developed as a generic service, with some making special efforts to target specific groups of patients and sections of the public. However, where such efforts have been made, they have tended to focus most of all on older people and least of all on children. CONCLUSIONS: PALS are intended to serve all sections of the community and accordingly need to be developed in ways that ensure the service is accessible to hard-to-reach groups such as children and young people. The remainder of the research will examine children, young people and parents' perspectives on how PALS can involve them, and will provide associated guidelines for trusts.

Care co-ordination and key worker schemes for disabled children: results of a UK-wide survey.

AIM: To investigate the prevalence and nature of care co-ordination and key worker services for disabled children and their families. METHODS: Postal survey of 225 Children with Disabilities Teams across the UK. RESULTS: Out of 159 questionnaires returned (70%), 35 (22%) reported having a care co-ordination scheme, with 30 (19%) of these providing key workers for families. The majority had multiagency and parent involvement in setting up and overseeing the schemes. However, multiagency funding was less common and funding for many schemes was short term. Different models of key working were apparent. Five schemes employed full-time key workers. In 21 schemes, professionals key worked with a few families as part of a larger case load, and in three schemes, both types of key workers were employed. Most schemes provided initial or ongoing training for key workers, but a few provided neither of these. DISCUSSION: The proportion of areas having care co-ordination or key worker services is consistent with findings on research with parents of disabled children, which reports that less than one-third of families have a key worker. The extent of multiagency involvement in planning and overseeing the operation of the service was positive but joint funding was more problematic. There was considerable variation in service models and as yet, little is known about whether or how such variations relate to outcomes for children and families. Further research will investigate these issues.

Intra-operative tibial plateau fracture during unicompartmental knee replacement: a case report.

Periprosthetic fracture is a recognised complication of joint replacement. Intra-operative fractures of the tibia during total knee replacement have been reported and classified, but there have been no reports in patients undergoing unicompartmental knee replacement. We report a case of intra-operative fracture of the medial tibial plateau during impaction of the tibial component of an Oxford unicompartmental knee replacement. This occurred following a small breach in the posterior tibial cortex during preparation of the tibial plateau for the implant. We therefore advise caution during this stage of the procedure, especially in patients who may already be at risk of intra-operative fracture.

Involving disabled and chronically ill children and young people in health service development.

AIM: To investigate the extent and nature of involvement of physically disabled or chronically ill children and young people in local health service development. METHODS: A postal survey of all health authorities (n = 99) and NHS Trusts (n = 410) in England. RESULTS: Seventy-six per cent of health authorities and 59% of Trusts responded. Twenty-seven initiatives involving chronically ill or disabled children and young people in consultation regarding service development were identified. Over half of these were carried out in partnership between health services and other agencies, usually local authorities and/or voluntary organizations. A variety of methods was used for consultation, including child-friendly methods such as drawing, drama and making a video. Seventeen initiatives reported that children's involvement had resulted in service changes, but only 11 went beyond consultation to involve children and young people in decision making about service development. Only a third of the organizations had someone with designated responsibility for children's involvement. DISCUSSION: The involvement of this group of children and young people in service development in the NHS is at an early stage. The failure of policy documents on user involvement to identify children and young people as a group for whom methods of consultation need to be developed, and the lack of people with designated responsibility for developing children's involvement may be a reason for slow progress in this area. The initiatives identified show that such involvement is possible and can have a positive impact on services.

Financial effects for families after the death of a disabled or chronically ill child: a neglected dimension of bereavement.

AIM: To investigate the financial circumstances of families whose child had died after a long-term illness and the factors contributing to financial difficulties. RESEARCH METHODS: Qualitative exploration involved semi-structured interviews with a purposive sample of 16 families whose child had died in the last 2 years and who were in touch with a children's hospice. RESULTS: All parents were affected by loss of or reduction in social security benefits. This could result in an immediate drop in income of as much as 72%. Paying for funerals and headstones could be hard. Financial problems after the child's death often had origins in the period of care, when parents had reduced incomes but faced extra costs of care. Some families had got into debt. Re-engaging with employment could be a slow process, and it was not clear where professional responsibility lay in providing financial advice and support. Insensitive treatment by administrative agencies increased problems for parents. DISCUSSION: Findings provide further evidence of the financial impact for families of caring for severely disabled children. This study shows how this impact can extend far into the period after death. Findings indicate the need for financial advice and support to families both during the period of care and after bereavement.

Communicating about pupils in mainstream school with special health needs: the NHS perspective.

AIM: To add to previous research carried out with young people, parents and teachers, by investigating health staff's perspectives on the difficulties, and possibilities for, achieving good communication with school staff with regard to children in mainstream school with a chronic illness or physical disability. RESEARCH DESIGN AND METHODS: A qualitative research study was carried out in one NHS Trust. Twenty semi-structured interviews were carried out with a purposive sample of health staff to cover the spectrum of professionals who have responsibility for meeting the needs of children with a chronic illness or physical disability in mainstream schools (paediatricians, school doctors, school nurses, specialist nurses, health visitors, GPs, speech and language therapists, paediatric occupational therapists, paediatric physiotherapists, clinical psychologists and psychiatrists). RESULTS: The extent to which health professionals communicated with school staff, and the way in which they went about it, varied widely. Communication was facilitated by joint meetings, shared documentation, and local policy development. Sources of difficulty in communication between health and education staff were: the parent as a conduit of information; the practical difficulties of arranging meetings; and lack of knowledge about other professionals' roles. The ethos of the school with regard to health matters, and the flow of information within health services, also had an impact on the communication process. Participants' recommendations focused on two key issues: clarification of the roles of health and education staff with regard to this group of pupils; and how information should flow from health to school staff. DISCUSSION: Many of the findings parallel the previous research with teachers, indicating agreement between professionals from different agencies about aspects of the communication process which are problematic and require attention. The findings suggest that improving communication requires both joint work between health and education staff, and improvements to practice within each agency.

Predictors of distress in parents of children with cancer: a prospective study.

OBJECTIVE: To investigate levels of psychological distress in parents of children with cancer and relationships between distress and measures of illness variables, appraisal, psychosocial resources and coping strategies. METHODS: Questionnaires were completed by 68 mothers and 58 fathers at 6 (Time 1) and 18 (Time 2) months post-diagnosis. RESULTS: High levels of distress for 51% of mothers and around 40% of fathers were apparent at both time points, with little change over time. For mothers, their appraisal of the strain of the illness, and their own ability to deal with it, and family cohesion were predictive of distress, both concurrently and prospectively, and, at Time 1, greater use of self-directed coping strategies was related to higher levels of distress. For fathers, risk factors of employment problems (Time 1) and the number of the child's hospital admissions (Time 2) were significant, along with appraisal and family cohesion. CONCLUSIONS: Continuation of high levels of distress over time points to the importance of identification of those at risk at an early stage and provision of ongoing support. Implications for such support are discussed.

Rehabilitation and total hip replacement: patients' perspectives on provision.

This paper examines the effectiveness of the rehabilitation component of total hip replacement (THR). It focuses on contrasting rehabilitation regimes in two hospitals in the north of England. Using qualitative methods, patients' perceived needs and goals are described, and the responsiveness of the interventions to their requirements is examined. The provision of information, equipment, and therapy was found to be useful in terms of preparing patients for their operation and facilitating their recovery, but less so in terms of helping them cope with any problems experienced after the operation. Drawing on patients' perspectives, a set of guidelines for good practice in rehabilitation for THR is presented.

Supporting pupils in mainstream school with an illness or disability: young people's views.

To date, little research has focused directly on health-related support in school for children with a chronic illness or physical disability, yet these children are known to be at increased risk for psychosocial and academic problems. In addition, few studies have sought the views of pupils directly: those which have report a wide range of problems with school life. The increasing numbers of children surviving and managing their health conditions, together with UK policy for inclusive education, means that a growing proportion of pupils in mainstream schools require understanding of their special health needs and may need service support from education and health professionals. This paper presents findings from semistructured interviews with 33 mainstream secondary school pupils with a variety of illnesses and disabilities on the impact of their health condition on school life. Results show that young people valued school and were actively managing the effects of their condition, but needed support from others. Informal support was most frequently cited, including parents--particularly mothers--teachers and close friends. The main difficulties were implications of school absence, exclusion from school life, teachers' reactions to the illness or disability, and peer relationships. The discussion focuses on ways in which health professionals can play a part in supporting pupils both directly and indirectly, through helping others in school understand the condition and its impact on school life.

Disputed diagnoses: the cases of RSI and childhood cancer.

Recently, greater emphasis has been accorded lay views and involvement in debates on health care provision. At the macro level, policy makers are urged to take heed of the opinions of the general public when formulating new policies for health care or making changes to existing ones. Furthermore, it is suggested that this accommodation should be repeated at the level of the individual, namely in encounters between doctors and patients. However, imbalances in the doctor-patient power relationship, compounded by structural barriers, can create problems which prevent this sort of collaborative interaction from taking place. Against this background, the paper draws on evidence from studies of two quite different conditions, repetitive strain injury (RSI) and childhood cancer, to explore lay perspectives and empowerment in relation to obtaining a diagnosis. The findings of the studies are scrutinised in respect of four related areas of concern: how much lay views count, exercising choice, referral pathways and the withdrawal of trust from medical practitioners. The evidence suggests that a substantial number of patients with RSI and parents of children with cancer felt their experiences and knowledge were disregarded by doctors in the diagnostic process. Denying the validity of an individual's perceptions had implications for obtaining an accurate diagnosis, which could in turn make access to appropriate health care and treatment problematic. Their experiences led some people with RSI to show a general distrust of medicine; this was less the case for parents of children with cancer. A key issue to emerge from the analysis is the need for additional training in two areas of the medical curriculum: communication skills and occupational health problems. The underlying problems of attitudes, especially giving weight to the informed views of lay people, is another matter which needs to be addressed.

Models of service support for parents of disabled children. What do we know? What do we need to know?

Research carried out over a number of years provides a consistent picture of the experiences and needs of parents of disabled children. Recent studies, based on models of stress and coping, have identified factors which relate to high or low levels of parental distress. Whilst this research can provide useful information for service development, there appears to have been little change over the years in parents' reports of unmet need. It is clear that parental need covers a wide range of aspects of family life and holistic models of service support are required. Although evaluation studies which identify models of services that can change this situation are few, there are positive examples of models of support. The paper reviews the findings of such evaluation and identifies a number of important characteristics of effective service models.