Helena Tuomainen

Meeting the Needs of Parents Around the Time of Diagnosis of Disability Among Their Children: Evaluation of a Novel Program for Information, Support, and Liaison by Key Workers

Objective. Key worker programs for families of children with disabilities, to promote information provision, emotional support, and liaisons among different agencies, have long been advocated but not extensively implemented. We report the impact on the experiences of parents and the practices of health care professionals of a novel, hospital-based, key worker service (Community Link Team [CLT]), implemented in the pediatric ophthalmology department of Great Ormond Street Hospital (London, United Kingdom). Design, Setting, and Participants. The CLT included 2 members, 1 of whom was present during the first outpatient assessment by the consultant ophthalmologist of any child newly diagnosed as visually impaired (corrected acuity of 6/18 or worse in the better eye) and accompanied the family during other assessments performed during that visit. A dedicated room was used by the CLT members to spend time with each family after completion of the clinical assessments. The CLT members reiterated and/or clarified clinical information already provided, specifically advised the families about visual stimulation programs and the benefits and purpose of visual impairment certification, and provided information about educational and social services. The same CLT member met the family at subsequent visits to the department and acted as the first point of contact for parents. Parents of children newly diagnosed with visual impairment and/or ophthalmic disorders at Great Ormond Street Hospital participated in a 2-stage study to assess their needs, their views about the processes of care, and their overall satisfaction. The study included a questionnaire survey with 2 standard instruments, ie, the Measure of Processes of Care, specifically developed and used to assess parents’ views of the degree to which health services for a range of childhood disorders are family-centered, and the short form of the Client Satisfaction Questionnaire, used to assess overall parental satisfaction or dissatisfaction with services in the preceding year, as in other studies of parental satisfaction with pediatric services. This was followed by in-depth individual interviews with a subsample of parents who returned completed questionnaires. The views of families with experience with the new service (CLT) were compared with those without. The experiences of health care professionals before and after implementation of the service were elicited through group interviews and were compared. We recognized that any differences would be attributable to both the direct effects of the CLT, ie, actual services provided by the team, and indirect effects, ie, broader changes in approaches or practices within the department resulting from shifting roles and responsibilities regarding specific elements of management. Therefore, both the specific tasks/activities undertaken by the CLT and broader changes in practices within the department were identified. Results. Seventy-nine families from the pre-CLT group and 68 from the post-CLT group (68% and 65% of those invited, respectively) participated in the questionnaire survey, of which 29 and 19 (71% and 79% of those invited), respectively, took part in interviews. The 2 groups were comparable with respect to sociodemographic and clinical characteristics. Parents and health care professionals agreed that the CLT provided important information and facilitated access to specific services, while providing both emotional and social support and facilitating meetings with other families with children with similar conditions. A number of key generic components of the service were identified. First, provision, within the outpatient setting, of a dedicated “quiet room” and office space for key workers was an essential physical requirement. Second, early identification of the key workers as the parents’ point of contact was essential; this was achieved in this case by the CLT members attending the first consultation, combined with their detailed debriefing of families at the end of the outpatient visit. Third, the adoption of certain tasks by the key workers, including some previously undertaken by ophthalmologists, helped to define the liaison role of the program. These tasks included discussing the process and benefits of visual impairment certification, contacting the advisory teacher for the visually impaired, and providing written reports to educational and social services; analogous tasks would exist for other disabilities. Conclusions. Research on the needs of families of visually impaired children has been limited but indicates that, as with other childhood disabilities, the greatest needs during the critical period around diagnosis are for information, especially about educational and social services, and emotional support from professionals, informal and formal social networks, and support groups. Although not widely implemented or studied, key worker programs for families of visually impaired children, particularly in the context of multidisciplinary visual impairment teams, have been advocated, on the basis of their potential to facilitate coordination of health, educational, and social services. The model of such provision evaluated in this study reflects the fact that it was established as an outpatient service in a tertiary referral center for pediatric ophthalmology in the United Kingdom, with the specific structure and specialized roles for health care professionals that this requires. Different models might be more suitable in other settings in the United Kingdom or elsewhere. However, the important general lessons learned should guide implementation of such services for families of children with other disabilities. The recently launched National Service Framework for Children provides a new context and standards for meeting the needs of disabled children and their families in the United Kingdom and may also guide initiatives elsewhere. The findings of this study support implementation of programs for information provision, support, and liaison by key workers in all specialized centers for the assessment and diagnosis of children with serious visual problems. Implementation of similar services for families with children with other disabilities is likely to be equally valuable.

Transition from child to adult mental health services: needs, barriers, experiences and new models of care

Transition from child to adult health care is a common experience for young people with enduring health problems who reach the age boundary between services. Transition is distinct from transfer (1), since it is more than a discrete administrative event. Good transition should be a co-ordinated, purposeful, planned and patient-centred process that ensures continuity of care, optimizes health, minimizes adverse events, and ensures that the young person attains his/her maximum potential. It starts with preparing a service user to leave a child-centred health care setting and ends when that person is received in, and properly engaged with, the adult provider (2). In physical disorders, transition became a clinical and research priority as an increasing number of young people with previously life-threatening conditions survived into adulthood and needed ongoing care. Systematic and narrative reviews in cystic fibrosis (3), haemophilia (4), diabetes (5), congenital heart disease (6), cancer (7), cerebral palsy and spina bifida (8) and palliative care (9) have all identified transition as a risk period for disengagement and deterioration, but also a therapeutic opportunity for ensuring good outcomes into adult life. Three broad categories of interventions have been tried: those aimed at the patient (educational programmes, skills training); those aimed at the staff (named transition co-ordinators, joint clinics run by paediatric and adult physicians); and changes in service delivery (separate young adult clinics, out of hours phone support, enhanced follow-up) (10). Yet the clinical and cost evaluation of such transition programmes is inconsistent and there are no robust and validated transition-related outcome measures (11).

Health services experiences of parents of recently diagnosed visually impaired children

Aim: To investigate the health service experiences and needs of parents in the period around diagnosis of ophthalmic disorders in their children. Methods: Parents of children newly diagnosed with visual impairment and/or ophthalmic disorders at a tertiary level hospital in London participated in a questionnaire survey, using standard instruments, followed by in-depth individual interviews, to elicit their views about the processes of care, their overall level of satisfaction, and their unmet needs. Results: 67% (147) of eligible families (135 mothers, 76 fathers) participated. Overall satisfaction with care was high, being greater among parents of children with milder visual loss or isolated ophthalmic disorders than those with more severe visual loss or multiple impairments. Nevertheless, parents’ reported greatest need was the provision of general information, including about their child’s ophthalmic disorder and educational and social services and support. Mothers reported greater information needs than fathers, as did white parents compared to those from ethnic minorities. White parents also regarded the processes of care to be less comprehensive and coordinated, as well as less enabling, than did parents from ethnic minorities. Conclusions: Although parents reported high overall satisfaction with services, improving the medium, content, and scope of general information provided by professionals to parents of visually impaired children emerges as a priority. Equitable planning and provision of health services for families of children with visual impairment needs to take into account that informational and other needs vary by whether the parent is the primary carer or not and their ethnicity, as well as by the severity and complexity of their child’s visual loss.

Engaging families in health services research on childhood visual impairment: barriers to, and degree and nature of bias in, participation

Aim: To investigate the barriers to, and degree and nature of bias in, participation in health services research by parents of children with visual impairment. Methods: Parents of children newly diagnosed with ophthalmic disorders at Great Ormond Street Hospital, London, participated in a study to elicit their health service experiences and needs through a postal questionnaire survey followed by in-depth interviews. The participating and non-participating families were compared at different stages of recruitment, according to sociodemographic and clinical characteristics. Results: 20% (55) of all eligible families could not be invited to participate because of out of date contact details for either the family and/or family doctor in the hospital and/or community record systems. Completed questionnaires were received from 67% (147/221) of contacted families, although only 6% actively declined to take part. Compared to non-participating parents, those who took part were more likely to be white British, from higher socioeconomic groups, have English as their main language, and have no other visually impaired family members. There were no significant differences according to the clinical characteristics of their affected children. Conclusions: Families from socioeconomically deprived and ethnic minority groups are likely to be less visible than others in health services research on childhood visual impairment. Geographical mobility in families of young children with visual disability poses a potentially important obstacle to engaging them in research on their experiences of health services. These findings indicate the importance of addressing potential biases in the design and interpretation of future studies, to ensure equity in recommendations for policy and practice, and in implementation of services.

Architecture and functioning of child and adolescent mental health services: a 28-country survey in Europe

The WHO Child and Adolescent Mental Health Atlas, published in 2005, reported that child and adolescent mental health services (CAMHS) in Europe differed substantially in their architecture and functioning. We assessed the characteristics of national CAMHS across the European Union (EU), including legal aspects of adolescent care. Using an online mapping survey aimed at expert(s) in each country, we obtained data for all 28 countries in the EU. The characteristics and activities of CAMHS (ie, availability of services, inpatient beds, and clinicians and organisations, and delivery of specific CAMHS services and treatments) varied considerably between countries, as did funding sources and user access. Neurodevelopmental disorders were the most frequent diagnostic group (up to 81%) for people seen at CAMHS (data available from only 13 [46%] countries). 20 (70%) countries reported having an official national child and adolescent mental health policy, covering young people until their official age of transition to adulthood. The heterogeneity in resource allocation did not seem to match epidemiological burden. Substantial improvements in the planning, monitoring, and delivery of mental health services for children and adolescents are needed.

Protocol for a cohort study of adolescent mental health service users with a nested cluster randomised controlled trial to assess the clinical and cost-effectiveness of managed transition in improving transitions from child to adult mental health services (the MILESTONE study)

Introduction Disruption of care during transition from child and adolescent mental health services (CAMHS) to adult mental health services may adversely affect the health and well-being of service users. The MILESTONE (Managing the Link and Strengthening Transition from Child to Adult Mental Healthcare) study evaluates the longitudinal course and outcomes of adolescents approaching the transition boundary (TB) of their CAMHS and determines the effectiveness of the model of managed transition in improving outcomes, compared with usual care. Methods and analysis This is a cohort study with a nested cluster randomised controlled trial. Recruited CAMHS have been randomised to provide either (1) managed transition using the Transition Readiness and Appropriateness Measure score summary as a decision aid, or (2) usual care for young people reaching the TB. Participants are young people within 1 year of reaching the TB of their CAMHS in eight European countries; one parent/carer and a CAMHS clinician for each recruited young person; and adult mental health clinician or other community-based care provider, if young person transitions. The primary outcome is Health of the Nation Outcome Scale for Children and Adolescents (HoNOSCA) measuring health and social functioning at 15 months postintervention. The secondary outcomes include mental health, quality of life, transition experience and healthcare usage assessed at 9, 15 and 24 months postintervention. With a mean cluster size of 21, a total of 840 participants randomised in a 1:2 intervention to control are required, providing 89% power to detect a difference in HoNOSCA score of 0.30 SD. The addition of 210 recruits for the cohort study ensures sufficient power for studying predictors, resulting in 1050 participants and an approximate 1:3 randomisation. Ethics and dissemination The study protocol was approved by the UK National Research Ethics Service (15/WM/0052) and equivalent ethics boards in participating countries. Results will be reported at conferences, in peer-reviewed publications and to all relevant stakeholder groups. Trial registration number ISRCTN83240263; NCT03013595 (pre-results).

Managing the link and strengthening transition from child to adult mental health Care in Europe (MILESTONE): background, rationale and methodology

BackgroundTransition from distinct Child and Adolescent Mental Health (CAMHS) to Adult Mental Health Services (AMHS) is beset with multitude of problems affecting continuity of care for young people with mental health needs. Transition-related discontinuity of care is a major health, socioeconomic and societal challenge globally. The overall aim of the Managing the Link and Strengthening Transition from Child to Adult Mental Health Care in Europe (MILESTONE) project (2014–19) is to improve transition from CAMHS to AMHS in diverse healthcare settings across Europe. MILESTONE focuses on current service provision in Europe, new transition-related measures, long term outcomes of young people leaving CAMHS, improving transitional care through ‘managed transition’, ethics of transitioning and the training of health care professionals.MethodsData will be collected via systematic literature reviews, pan-European surveys, and focus groups with service providers, users and carers, and members of youth advocacy and mental health advocacy groups. A prospective cohort study will be conducted with a nested cluster randomised controlled trial in eight European Union (EU) countries (Belgium, Croatia, France, Germany, Ireland, Italy, Netherlands, UK) involving over 1000 CAMHS users, their carers, and clinicians.DiscussionImproving transitional care can facilitate not only recovery but also mental health promotion and mental illness prevention for young people. MILESTONE will provide evidence of the organisational structures and processes influencing transition at the service interface across differing healthcare models in Europe and longitudinal outcomes for young people leaving CAMHS, solutions for improving transitional care in a cost-effective manner, training modules for clinicians, and commissioning and policy guidelines for service providers and policy makers.Trial registration“MILESTONE study” registration: ISRCTN ISRCTN83240263 Registered 23 July 2015; ClinicalTrials.gov NCT03013595 Registered 6 January 2017.

A systematic review of the literature on ethical aspects of transitional care between child- and adult-orientated health services

BackgroundHealthcare policy and academic literature have promoted improving the transitional care of young people leaving child and adolescent mental health services (CAMHS). Despite the availability of guidance on good practice, there seems to be no readily accessible, coherent ethical analysis of transition. The ethical principles of non-maleficence, beneficence, justice and respect for autonomy can be used to justify the need for further enquiry into the ethical pros and cons of this drive to improve transitional care. The objective of this systematic review was therefore to systematically search for existing ethical literature on child- to adult-orientated health service transitions and to critically appraise and collate the literature, whether empirical or normative.MethodsA wide range of bioethics, biomedical and legal databases, grey literature and bioethics journals were searched. Ancestral and forward searches of identified papers were undertaken. Key words related to transition, adolescence and young adulthood, ethics, law and health. The timeframe was January 2000 to at least March 2016. Titles, abstracts and, where necessary, full articles were screened and duplicates removed. All included articles were critically appraised and a narrative synthesis produced.ResultsEighty two thousand four hundred eighty one titles were screened, from which 96 abstracts were checked. Forty seven full documents were scrutinised, leading to inclusion of two papers. Ancestral and forward searches yielded four further articles. In total, one commentary, three qualitative empirical studies and two clinical ethics papers were found. All focused on young people with complex care needs and disabilities. The three empirical papers had methodological flaws. The two ethical papers were written from a clinical ethics context rather than using a bioethical format. No literature identified specifically addressed the ethical challenges of balancing the delivery of transitional care to those who need it and the risk of pathologizing transient and self-limited distress and dysfunction, which may be normal during adolescence.ConclusionsThere is very little research on ethical aspects of transitional care. Most existing studies come from services for young people with complex care needs and disabilities. There is much scope for improvement in the amount and quality of empirical research and ethical analysis in this area.