Families' and healthcare professionals' perceptions of healthcare services for children and young people with medically unexplained symptoms: a narrative review of the literature

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 in the long term. Due to the potentially complex needs of this group, children and young people with MUS may require timely access to suitable health and social care services to effectively manage symptoms and achieve their academic, social and personal potential. Families and professionals can offer important insights into the availability and appropriateness of current community and specialist health and social care services. This review is the first critical evaluation and synthesis of research that has examined families' and healthcare professionals' (HCP) perceptions of healthcare services for children and young people with MUS. A systematic search of electronic databases and manual searches of key journals and reference lists identified 17 papers from 15 studies for inclusion in the review. The review highlights the paucity of rigorously conducted research on this topic. Studies have been narrowly focused on the views of a homogeneous group of mothers and young people attending single centres. There has been some attempt to examine doctors' views, but the perceptions of children, fathers and health and social care professionals are absent or under‐represented, and multi‐site and longitudinal studies are lacking. Thematic analysis of the results from the included studies suggests that knowledge, communication, health beliefs and healthcare settings are factors that influence families' and HCPs' perceptions of services. Families report dissatisfaction with some HCPs' approach to managing MUS. The findings suggest that children and young people with MUS are at risk of receiving suboptimal care and support because there is insufficient research to inform high‐quality, evidence‐based practice.     

Reporting the whole story: Analysis of the ‘out‐of‐scope’ questions from the James Lind Alliance Teenage and Young Adult Cancer Priority Setting Partnership Survey

ObjectiveWe conducted a UK‐wide survey to identify the top 10 research questions for young people''s cancer. We conducted secondary analysis of questions submitted, which were ‘out‐of‐scope’ of the original survey aim. We sought to disseminate these questions, to inform practice, policy and the development of potential interventions to support young people with cancer.DesignJames Lind Alliance Priority Setting Partnership.ParticipantsYoung people aged 13‐24 with a current/previous cancer diagnosis, their families/friends/partners and professionals who work with this population.MethodsEight hundred and fifty‐five potential research questions were submitted, and 326 were classified as ‘out‐of‐scope’. These questions, along with 49 ‘free‐text’ comments, were analysed using thematic analysis.ResultsThe 375 out‐of‐scope questions and comments were submitted by: 68 young people, 81 family members/partners/friends and 42 professionals. Ten overarching themes were identified: diagnostic experience; communication; coordination of care; information needs and lack of information; service provision; long‐term effects and aftercare support; family support; financial impact; end‐of life care; and research methods and current research.ConclusionsThe need to tailor services, information and communication is a striking thread evidenced across the ‘out‐of‐scope’ questions. Gaps in information highlight implications for practice in revisiting information needs throughout the cancer trajectory. We must advocate for specialist care for young people and promote the research priorities and these findings to funding bodies, charities, young people and health and social care policymakers, in order to generate an evidence base to inform effective interventions across the cancer trajectory and improve outcomes.Patient/public contributionsPatients and carers were equal stakeholders throughout.     

Teachers' perspectives of supporting pupils with long‐term health conditions in mainstream schools: a narrative review of the literature

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 interventions that aim to improve teachers' knowledge of long‐term conditions, and teachers' confidence in supporting children and young people. A narrative literature review was conducted using a systematic search of computerised databases and manual searches of key journals and reference lists to retrieve studies published between 2003 and 2013. Studies were critically appraised and key themes across studies identified. In total, 61 papers from 58 studies were included in the review. The findings suggest that teachers receive little formal training relevant to long‐term condition management and are fearful of the risks involved in teaching children and young people with long‐term conditions. Communication between families, school and health and social care services appears to be poor. Educational programmes developed in conjunction with and/or delivered by healthcare professionals seem to have the potential to increase teachers' knowledge and confidence. This review suggests that healthcare professionals have an important role to play in supporting teachers in identifying and meeting the needs of pupils with long‐term conditions. It is vital that pupils with long‐term conditions receive appropriate care and support in schools to ensure their safety and help them to integrate with their peers and achieve their academic potential. Limitations in the current evidence are highlighted and implications for future research are identified.     

Experiences of transition from children's to adult's healthcare services for young people with a neurodevelopmental condition

Previous research has highlighted a lack of continuity of care when young people with a neurodevelopmental condition make the transition from children's to adult specialist healthcare services. A lack of planning, consistency, and availability of adult services has been found to lead to; increased anxiety, poor health outcomes, reduced support and some young people not receiving healthcare. The majority of transition research has focused on what health professionals consider important in the transition process, rather than focusing on the experiences of the young people and those closest to them. Our objective was to gather evidence from young people (and their families) who had experienced transition from children's to adult specialist healthcare services through semi-structured interviews. Volunteers were recruited from two London boroughs. All young people were aged between 18 and 25 years with a neurodevelopmental condition (Attention Deficit Hyperactivity Disorder, Autism Spectrum Disorder and/or an Intellectual Disability). Overall, we interviewed six young people with support from a family member. Five further family members were interviewed on behalf of the young person. In total, ten semi-structured interviews were transcribed verbatim and analysed using Interpretative Phenomenological Analysis. Four themes emerged from the analysis: (a) Parents as advocates, (b) Availability of adult's specialist health and social care services, (c) Lack of information sharing and (d) Transition as a binary, abrupt change. Our findings suggest the transition experience could be improved by changing service specifications to incorporate assessment and handover across the age range of 16–20 years. Additionally, statutory services should understand and provide the coordination role now offered by parents in transition. We suggest future research could evaluate the feasibility of a patient-owned online information sharing tool with information about relevant services for young people and their families.     

Building a Successful Care Path in Residential Care: Findings from Qualitative Research with Young People and Professionals in Italy

Qualitative methods (i.e. semi-structured interviews) were used in this micro-research to explore the different ways in which young people and social and residential workers perceive the outcomes of the residential care experience. By comparing the participants’ points of view, it was possible to investigate different ways of thinking about residential care plans and evaluating outcomes. Seven residential care paths were considered via a total of 21 interviews with young people formerly in residential care (n = 7), residential workers (n = 7) and social workers (n = 7). The analysis focused on the young people's life path and on the understanding of their family relationships. The results highlight the social workers’ difficulty in sharing a care plan with residential workers and with the respective families, and underline the importance of thinking about ways of cooperating between different services and families: a methodology focusing on participation of families and children leads to an increased likelihood of successful intervention.     

Transitions in the lives of young people with complex healthcare needs

Background 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. Methods Twenty‐eight young people aged between 8 and 19 years old were recruited via Community Children's Nursing Teams. Data were collected by in‐depth qualitative interviews and analysed using Grounded Theory principles and procedures. Results Young people with complex healthcare needs experience multiple and often concurrent transitions in their lives. As well as moving from childhood to adulthood, they experience different organizational and illness transitions. This paper focuses on their experiences of moving from children to adult services and moving from parental care to self‐care. Moving to adult services was characterized as a time of uncertainty because of lack of information and involvement in transition planning. Concerns were expressed about the continuity of support packages into adult services and whether specialist expertise would be available. Young people in adult services described how they had needed to adjust to a different culture and way of working and the loss of relationships with familiar, trusted professionals. In addition to becoming socially independent, young people were in the process of acquiring control over their healthcare and support needs. The acquisition of responsibility for managing therapies and devices was described as an evolving, individually negotiated process. However, responsibility for decision‐making and liasing with services could be acquired suddenly on transfer to adult services and not as part of an integrated self‐care transition process. Conclusions Transition is often too focused on service transition and transfer rather than conceptualizing it holistically as part of the process of moving to adulthood and independence. Young people with complex healthcare needs may have support needs that are unfamiliar for adult services at present. Multi‐agency personalized planning that involves parents and young people is essential to ensure continuity of support and integration with other life transitions.     

Young adults' (16-25 years) suggestions for providing developmentally appropriate diabetes services: a qualitative study

Managing the multiple demands of a chronic condition whilst negotiating the developmental tasks of adolescence and young adulthood is a process that is neither well described nor understood, particularly in relation to providing developmentally appropriate health care for young people. The importance of this issue is starting to be reflected within the literature, and although research into models of service delivery is emerging, a lack of user involvement in service development is apparent. This qualitative, user involvement study aimed to describe and understand the considered opinions of 19 young adults with diabetes who were receiving secondary care services about the provision of diabetes services for young people. The findings, gathered using semistructured interview and focus group methods, have potentially wide-reaching implications across primary and secondary health care, and across agencies providing services to children and young people, in terms of facilitating a person's transition through adolescence and into young adult life. Participants suggested key issues to address when developing services for young people, including staff consistency, civility, clinic structures which help a person navigate the health care system, provision of age-specific information, and support in relation to a range of health, emotional, social and developmental needs. Health care professionals can help young people to meet the expectations upon them as autonomous service users by modelling appropriate relationships, helping them to acquire skills and knowledge, and overcome barriers to them becoming active participants in their health care and achieving social participation in a fuller sense. It is somewhat arbitrary to delineate between adolescence and young adulthood in terms of age alone, but in this paper, 'adolescence' refers to the period between 11 and 15 years of age, and 'young adulthood' between 16 and 25 years of age. The phrase 'young people' will also be used to refer to people between 11 and 25 years.     

''Follow the Fish'': involving young people in primary care in Midlothian

OBJECTIVES: The project aims were to enable young people to contribute their views about health services, to encourage professionals and policy makers to listen to the young people and to stimulate action to address the issues raised. DESIGN: Peer interviews were undertaken by a team of five young people to identify the experience and views of young people of various ages about health services. Drama workshop sessions were conducted with 10-15 young people, encompassing initial issue-identifying activities and group discussion about their own experience of, and views about health services, followed by role-play and improvisation to construct drama scenarios about the issues gathered from the interviews and discussions. SETTING AND PARTICIPANTS: Twenty young people aged 12-16 years from the Mayfield and Gorebridge areas of Midlothian were recruited from Newbattle Community High school. The project was conducted as a voluntary after-school activity for 12 weeks. RESULTS: A drama was constructed from research conducted by young people into the experiences and views of their peer group about health services. A cast of young people performed the drama to an invited audience of 30 health and education professionals and held a post-performance question and answer session with the audience to explore the issues raised. The drama engendered a number of practical outcomes related to improving the usage and experience of health services of young people. CONCLUSIONS: Drama can offer a means to encourage participation, facilitate participants' self-expression and explore health/health service themes and issues. In conjunction with conventional techniques such as interviews and group discussions, a drama project can also be used to communicate the experience, views and needs of the wider client group to service providers and planners. Such initiatives can generate outcomes to improve service users' experience of health services.     

Health and social care costs for young adults with epilepsy in the UK

Maintaining contact with services will help improve clinical and social outcomes as children with epilepsy move into their adult lives. This study has collated evidence on the extent to which young adults with epilepsy are supported by health and social care services posttransition, and the costs of such support. UK prevalence and service use data were taken from policy and research literature, as well as national data sets and reports. Costs were attached to these data to arrive at agency and overall total costs. There are approximately 42 000 young adults (18–25 years) with epilepsy costing the UK health and social care budgets £715.3 million per annum, on average £17 000 per young adult with epilepsy. A further £61 million falls to the social security budget. Most young adults with epilepsy will rarely use these services, but those with additional health needs have high and often long‐term support needs, including supported accommodation and personal care. Current resources used by these young adults are summarised but deficits in service availability can mean long waiting times and sub‐optimal treatment. Young adults also want more support to help them take advantage of education and employment opportunities and more information about managing the impacts of epilepsy on their lives. Improving services will cost money, but has the potential to lead to better outcomes for young adults.     

Collaborative working in health and social care: Lessons learned from post-hoc preliminary findings of a young families’ pregnancy to age 2 project in South Wales,United Kingdom

Children of young and socially disadvantaged parents are more likely to experience adverse outcomes. In response to this, a unique young families’ project in Swansea, UK, was created, which drew together a team of multi-agency professionals, to support people aged 16–24 from 17 weeks of pregnancy throughout 1,001 days of the child's life. The aim of the JIGSO (the Welsh word for Jigsaw) project is for young people to reach their potential as parents and to break the cycle of health and social inequality. This evaluation analysed routinely collected data held by the project from January 2017 to December 2018 exploring health and social outcomes, including smoking and alcohol use in pregnancy, breastfeeding, maternal diet and social services outcomes. Outcomes were compared to local and national averages, where available. Data relating to parenting knowledge and skills were available via records of 10-point Likert scales, one collected at the start of the JIGSO involvement and one around 4–6 months later. Findings showed higher than average levels of breastfeeding initiation and lower smoking and alcohol use in pregnancy. Parents also reported enhanced knowledge and confidence in their child care skills, as well as improved family relationships. Parents with high levels of engagement with JIGSO also appeared to have positive outcomes with Social Services (their child's name was removed from child protection register or their case was closed to social services). This was a post-hoc evaluation, not an intervention study or trial, and thus findings must be interpreted with caution. Despite this, the findings are promising and more prospective research exploring similar services is required.     

Development of System Performance Indicators for Adolescent and Young Adult Cancer Care and Control in Canada

ObjectivesTo develop an expert-group, consensus-based list of system performance indicators to be used for monitoring, evaluating, and benchmarking progress for cancer care and control in adolescents and young adults (AYAs) in Canada.MethodsA national multidisciplinary panel of AYA oncology experts was convened; they prepared a literature review and undertook a brainstorming exercise to create a comprehensive list of indicators based on a previously defined framework for AYA cancer care and control in Canada. A modified Delphi process was then undertaken to cull the list based on 3 quick screen criteria. Three rounds of ranking were required. The fourth stage employed a face-to-face meeting, and the final stage utilized a survey to rank the indicators on the basis of importance and feasibility.ResultsNineteen participants contributed to the 5-stage process. From an initial list of 114 indicators, 14 were ultimately endorsed, representing 5 themes: active care, survivorship, psychosocial issues, palliative care, and research. The 5 highest ranked indicators were assessed as very to moderately feasible, with only a single indicator (clinical trial enrollment) in the top 5 assigned a least feasible ranking.ConclusionThe 14 indicators provide a starting point for the development of a standard set of metrics for AYA cancer care and control in Canada and have potential for international utility.     

Patient Preferences for Anxiety and Depression Screening in Cancer Care: A Discrete Choice Experiment

ObjectivesScreening for anxiety and depression in cancer care is recommended, as identification is the first step in managing anxiety and depression. Nevertheless, patient preferences for anxiety and depression screening in cancer care are unknown. The objective of this study was to investigate and identify the aspects of an anxiety and depression screening program cancer patients value most, to inform decision-makers about ways to improve patient uptake and ultimately, the provision of patient-centered care.MethodsA discrete choice experiment was designed and implemented within an Australian cancer population sample. Participants were presented with a series of hypothetical screening programs labeled as “screening program 1” and “screening program 2” and were asked to choose their preferred one. The discrete choice experiment was administered using an online survey platform. A mixed logit and a latent class analysis was conducted.ResultsParticipants (n = 294) preferred screening to be conducted by a cancer nurse, face-to-face, and at regular intervals (monthly or every 3 months). Participants also preferred follow-up care to be delivered by mental health professionals embedded within the cancer care team. Factors that influenced preferences were the low cost and short waiting times for access to care.ConclusionsCancer patients prefer cancer services with integrated mental healthcare services. To maximize patient uptake, anxiety and depression screening programs should be routinely offered, delivered by oncology healthcare staff in a face-to-face format, and, postscreening, to be care for by mental health professionals embedded within the cancer service.     

Hidden Children: Perspectives of Professionals on Young Carers of People with Mental Health Problems

Young carers of people with mental health problems are highly hidden, ostracised and vulnerable. To make matters worse, many professionals from the social, health and education sectors are not fully aware of the difficulties and central issues facing young carers of people with mental health problems. In order to make young carers of people with mental health problems more visible and to explore gaps in need and good practice from the perspectives of professionals, 65 participants were interviewed. The sample included professionals from the social, healthcare and voluntary sectors. Respondents were asked to discuss their understanding of young carers and appropriate interventions and methods to address young carers’ needs. Findings highlight: young carers’ isolation, stigma and restricted opportunities; fears involving family separation and child protection; and examples of good professional practice. New findings and examples of good professional practice that provide holistic, sensitive and effective support include: young carer groups and forums; young carer days; raising awareness of young carers in schools, especially via technology such as DVDs and the Internet; and having key workers to befriend young carers so as to advocate for better care, to provide emotional and psychological support and to facilitate young carer involvement.     

What is the perceived nature of parental care and support for young people with cystic fibrosis as they enter adult health services?

The majority of those diagnosed with cystic fibrosis (CF) now live to adulthood. In response to increased survival age, transition services have been developed to ensure smooth transfer from paediatric to adult specialist healthcare, although the majority of treatment and care continues to be delivered in the home. However, little is known about how young adults and staff conceptualise the nature of the parental role after young people have left paediatric care. The aim of this study is to explore the nature of parental support that is perceived to be available at this time. As part of a larger study of transitional care, semi‐structured interviews were conducted with 50 young people with CF aged 13–24 years (32 with experience of transition and/or adult CF services) and 23 specialist healthcare professionals (14 working in adult care) across two CF centres in Southeast England. Interviews took place in young people’s homes or within CF services, using a topic guide and were recorded, transcribed and analysed thematically. Four domains of perceived parental support were identified by the young people interviewed, with varying degrees of continuity into adult care: (1) Providing non‐clinical practical and emotional support; (2) Acting as ‘troubleshooters’ in times of health‐related crisis; (3) Working in partnership with offspring in ongoing disease management in the home and clinic; (4) Acting as ‘protectors’ of their children. Young people and service staff expressed tensions in managing parental involvement in post‐paediatric consultations and the degree to which parents should be aware of their offspring’s deteriorating health and social concerns. Parental anxiety and over‐involvement was perceived by many young people and staff as unsupportive. We suggest that although health and social care providers are mindful of the tensions that arise for those leaving paediatric services, the place of parental support in adult care is currently contentious for these ‘new’ ageing populations.     

Perceptions About the Impact of Cigarette Filters on the Environment and Smoking-Related Behaviors

PurposeExamine adolescents’ and young adults’ (AYAs) knowledge and perceptions about the composition and environmental harms of cigarette filters and determine how perceptions are associated with support for policy interventions.MethodsCross-sectional, convenience sample from 10 California schools. AYAs (N = 429; 70% < 21 years) were surveyed about tobacco use, perceptions of cigarette filters, their impact on the environment, and cigarette sales bans.ResultsMost agreed that filters are harmful to the environment and not biodegradable (89%, n = 383 respectively); fewer knew filters are made of plastic (43%, n = 185). AYAs who agreed that filters are harmful to the environment were more supportive of cigarette sales bans (OR = 2.78 [95% CI: 1.18, 6.58]).ConclusionsKnowledge of the environmental harms of cigarettes among AYAs may strengthen support for tobacco control. More research is needed to further understand the knowledge and attitudes about the environmental impact of tobacco and to clarify how this might add support for tobacco-related policies.     

Confidentiality Discussions and Private Time With a Health-Care Provider for Youth,United States, 2016

Purpose

The objective of the study was to define factors associated with adolescent and young adult (AYA) experiences with private time and having discussed confidentiality and the impact of these experiences on improving delivery of clinical preventive services.