Rights

This article provides an overview of different types of rights to aid consideration of, and debate about, children and young people’s rights in the context of paediatrics and child health. It demonstrates how children’s rights may or may not differ from adult rights and the implications for practice. It shows that applying a children’s rights framework can be more helpful in pursuing a public child health agenda than in reducing ethical or legal conflicts when interacting with child patients and their families

Transition to adult services for children and young people with palliative care needs : a systematic review

Objective: To evaluate the evidence on the transition process from child to adult services for young people with palliative care needs. Design: Systematic review Setting: Child and adult services and interface between healthcare providers. Patients: Young people aged 13 to 24 years with palliative care conditions in the process of transition. Main outcome measures: Young people and their families’ experiences of transition, the process of transition between services and its impact on continuity of care, and models of good practice. Results: 92 studies included. Papers on transition services were of variable quality when applied to palliative care contexts. Most focused on common life threatening and life limiting conditions. No standardised transition programme identified and most guidelines used to develop transition services were not evidence based. Most studies on transition programmes were predominantly condition-specific (e.g. cystic fibrosis, cancer) services. Cystic fibrosis services offered high quality transition with the most robust empirical evaluation. There were differing condition-dependent viewpoints on when transition should occur but agreement on major principles guiding transition planning and probable barriers. There was evidence of poor continuity between child and adult providers with most originating from within child settings. Conclusions: Palliative care was not, in itself, a useful concept for locating transition-related evidence. It is not possible to evaluate the merits of the various transition models for palliative care contexts, or their effects on continuity of care, as there are no long-term outcome data to measure their effectiveness. Use of validated outcome measures would facilitate research and service development

Systematic review of interventions for the secondary prevention and treatment of emotional abuse of children by primary carers

Background Emotional abuse (or psychological maltreatment, as it is more commonly called in the US) is an inadequately researched and poorly understood concept, despite increasing awareness about the harm it can cause to children‟s lives. Although it unifies and underpins all types of maltreatment it also occurs alone and when it does, tends to elude detection and intervention. There have to date been no systematic reviews of the literature on the secondary prevention and treatment involving the parents or primary carers of emotionally abused children. Objective The objective of the review was to identify studies that evaluate the effectiveness of interventions in the secondary prevention and treatment of child emotional abuse involving the parents or primary carers of children aged 0 – 19 years. Methods Studies were included if they involved any intervention which was directed at emotionally abusive parenting and that measured change in (i) emotional unavailability (ii) negative attributions (i.e. that involve the parent attributing negative intentions, beliefs or attitudes toward the child); (iii) developmentally inappropriate interactions; (iv) lack of recognition of children‟s boundaries; (v) inconsistency of parenting role; (vi) missocialisation or consistent failure to promote the child‟s social adaptation. The primary outcomes evaluated involved proxy measures of a range of parent, family and child outcomes including parental psychopathology, parenting attitudes and practices, family functioning and/or child behaviour and the child‟s development and adaptation. . A broad search strategy was developed in order to identify as many relevant studies as possible. An electronic search of a wide range of databases was carried about. No study type was excluded. The search was augmented by direct contact with academics and practitioners known in this field. The search included studies written in English, Spanish, French and German. Studies were included if the intervention was described, and the impact on at least one indicator of emotional abuse was assessed. Included studies were critically appraised by two reviewers using standard criteria. Data were extracted using a standard proforma, and a qualitative synthesis of results was carried out. Results The initial search yielded 4248 publications of potential interest. Of these, 175 were obtained for possible inclusion or as background material. A total of 21 studies of 18 interventions, met all the inclusion criteria. A further 43 studies were relevant, but did not meet all of the inclusion criteria. Studies were organised according to the type of emotional abuse targeted: emotionally abusive parenting; parents of infants with faltering growth; missocialisation: parenting interventions with substance-abusing mothers. Twelve included studies had quantitative designs. Of these, 6 comprised randomised controlled trials; 1 comprised a follow-up of a randomised controlled trial; 2 were controlled studies; and 3 had one-group pre- and post-designs. The remaining 9 were case studies. Included studies involved a wide range of interventions. The 8 studies for parents which address emotionally abusive parenting (rejection, misattribution, parent-child role reversal and anger management) involved evaluations of cognitive-behavioural training (CBT), behavioural training and parent-infant psychotherapy. Two further case studies involved cognitive-behavioural training, mentalisation and family-based therapy. The 9 interventions with parents of infants with faltering growth evaluated CBT, behavioural training, parent infant psychotherapy and interaction guidance; lay home visitors, and a range of therapeutic options based on the diagnostic condition of the parents. The 3 studies of interventions for substance abusing mothers evaluated a relational psychotherapy group for mothers, and a residential treatment for substance abuse with a parenting component. The sample sizes for quantitative studies were small and ranged from 17 to 98 participants. Ten interventions involved mothers alone, while a further 11 included fathers, either at the outset or at a later stage, and in 3 cases extended family members. Interventions for emotionally abusing parents The findings from the 8 included studies evaluating CBT, psychotherapy, and behavioural approaches suggest that group-based CBT may be an effective means of intervening with this group of parents, although it cannot currently be recommended with parents experiencing symptoms of severe psychopathology. While one comparative study showed a psychotherapeutic intervention to be more effective than a CBT focused intervention, the outcomes measured in this study (i.e. parent and child representations) favoured the former. Behavioural case work involving the use of problem-solving techniques may also have a role to play with some parents, although further research is still needed. Interventions to enhance parental sensitivity The findings from a systematic review of 81 interventions that aimed at enhancing parental sensitivity and / or infant attachment found strong evidence that short term (less than 16 sessions) interventions, with a behavioural focus and aimed exclusively at enhancing maternal sensitivity were also most effective in enhancing infant attachment security. This supports the notion of a causal role of sensitivity in shaping attachment. Interventions that included fathers as well as mothers showed higher effect sizes but results are tentative since they are based on a small number of small scale trials. Parental behaviours associated with faltering growth Nine studies evaluated a range of interventions with parents of babies with faltering growth including interaction guidance, home visiting; parent-child psychotherapy, behavioural casework and multi-component interventions. The findings show that interaction guidance and parent-infant psychotherapy may be potentially effective means of working with this group of clients along with behavioural casework, but that further research is needed before these can be recommended. Missocialisation: Parenting interventions for substance-abusing parents 5 studies (one of which was a 6-month follow-up) evaluated interventions for substance abusing mothers, including a relational psychotherapy group and a residential treatment for substance abusing adults with a parenting component. The findings show that initial gains made in the former were not sustained at 6-months and few benefits from residential intervention. Conclusions Emotional abuse is a complex issue resulting in part from learned behaviours, psychopathology and/or unmet emotional needs in the parents, and often compounded by factors in the families‟ immediate and wider social environment. As such, a „one-approach-fits-all‟ is unlikely to lead to sustained change. The evidence base is weak, but suggests that some caregivers respond well to cognitive behavioural therapy. However, the characteristics that define these parents are not clear. There is currently no evidence to support the use of this intervention alone in the treatment of severely emotionally abusive parents. Some of the evidence suggests that a certain form of emotional abuse (for example, highly negative parent affect, which may be expressed as frightened and frightening behaviours in the parent) stemming from unresolved trauma and loss, is less amenable to CBT. There is some evidence that interaction guidance and psychotherapeutic approaches can generate change in parents with more severe psychopathology. Further research is urgently needed to evaluate the benefits of both psychotherapeutic and cognitive behavioural interventions, including those which take the form of family therapy, with parents at the more severe end of the spectrum, with fathers, and with older children. There is also a need to gain further understanding about which forms of emotional abuse respond best to different treatments

Process, outcome and experience of transition from child to adult mental healthcare : multiperspective study

Background Many adolescents with mental health problems experience transition of care from child and adolescent mental health services (CAMHS) to adult mental health services (AMHS). Aims As part of the TRACK study we evaluated the process, outcomes and user and carer experience of transition from CAMHS to AMHS. Method We identified a cohort of service users crossing the CAMHS/AMHS boundary over 1 year across six mental health trusts in England. We tracked their journey to determine predictors of optimal transition and conducted qualitative interviews with a subsample of users, their carers and clinicians on how transition was experienced. Results Of 154 individuals who crossed the transition boundary in 1 year, 90 were actual referrals (i.e. they made a transition to AMHS), and 64 were potential referrals (i.e. were either not referred to AMHS or not accepted by AMHS). Individuals with a history of severe mental illness, being on medication or having been admitted were more likely to make a transition than those with neurodevelopmental disorders, emotional/neurotic disorders and emerging personality disorder. Optimal transition, defined as adequate transition planning, good information transfer across teams, joint working between teams and continuity of care following transition, was experienced by less than 5% of those who made a transition. Following transition, most service users stayed engaged with AMHS and reported improvement in their mental health. Conclusions For the vast majority of service users, transition from CAMHS to AMHS is poorly planned, poorly executed and poorly experienced. The transition process accentuates pre-existing barriers between CAMHS and AMH

Management of transitions to adult services for young people with eating disorders : survey of current practice in England

Aims and method The Royal College of Psychiatrists has published recommendations for managing transitions between child and adolescent mental health services (CAMHS) and adult services for eating disorders. A self-report questionnaire was designed to establish how many CAMHS teams meet these recommendations and was distributed to 70 teams providing eating disorders treatment in England. Results Of the 38 services that participated, 31 (81.6%) reported a flexible upper age limit for treatment. Only 6 services (15.8%) always transferred young people to a specialist adult eating disorders service and the majority transferred patients to either a specialist service or a community mental health team. Most services complied with recommended provision such as a written transition protocol (52.6%), individualised transition plans (78.9%), joint care with adult services (89.5%) and transition support for the family (73.7%). Clinical implications Services are largely compliant with the recommendations. It is a concern that only a small proportion of services are always able to refer to a specialist adult service and this is likely to be due to a relative lack of investment in adult services

Transition between child and adult services for young people with attention-deficit hyperactivity disorder (ADHD): findings from a British national surveillance study

Background Optimal transition from child to adult services involves continuity, joint care, planning meetings and information transfer; commissioners and service providers therefore need data on how many people require that service. Although attention-deficit hyperactivity disorder (ADHD) frequently persists into adulthood, evidence is limited on these transitions. Aims To estimate the national incidence of young people taking medication for ADHD that require and complete transition, and to describe the proportion that experienced optimal transition. Method Surveillance over 12 months using the British Paediatric Surveillance Unit and Child and Adolescent Psychiatry Surveillance System, including baseline notification and follow-up questionnaires. Results Questionnaire response was 79% at baseline and 82% at follow-up. For those aged 17-19, incident rate (range adjusted for non-response) of transition need was 202-511 per 100 000 people aged 17-19 per year, with successful transition of 38-96 per 100 000 people aged 17-19 per year. Eligible young people with ADHD were mostly male (77%) with a comorbid condition (62%). Half were referred to specialist adult ADHD and 25% to general adult mental health services; 64% had referral accepted but only 22% attended a first appointment. Only 6% met optimal transition criteria. Conclusions As inclusion criteria required participants to be on medication, these estimates represent the lower limit of the transition need. Two critical points were apparent: referral acceptance and first appointment attendance. The low rate of successful transition and limited guideline adherence indicates significant need for commissioners and service providers to improve service transition experiences

Transitions of care from child and adolescent mental health services to adult mental health services (TRACK Study) : a study of protocols in Greater London

Background: Although young people's transition from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS) in England is a significant health issue for service users, commissioners and providers, there is little evidence available to guide service development. The TRACK study aims to identify factors which facilitate or impede effective transition from CAHMS to AMHS. This paper presents findings from a survey of transition protocols in Greater London. Methods: A questionnaire survey (Jan-April 2005) of Greater London CAMHS to identify transition protocols and collect data on team size, structure, transition protocols, population served and referral rates to AMHS. Identified transition protocols were subjected to content analysis. Results: Forty two of the 65 teams contacted (65%) responded to the survey. Teams varied in type (generic/targeted/in-patient), catchment area (locality-based, wider or national) and transition boundaries with AMHS. Estimated annual average number of cases considered suitable for transfer to AMHS, per CAMHS team (mean 12.3, range 0–70, SD 14.5, n = 37) was greater than the annual average number of cases actually accepted by AMHS (mean 8.3, range 0–50, SD 9.5, n = 33). In April 2005, there were 13 active and 2 draft protocols in Greater London. Protocols were largely similar in stated aims and policies, but differed in key procedural details, such as joint working between CAHMS and AMHS and whether protocols were shared at Trust or locality level. While the centrality of service users' involvement in the transition process was identified, no protocol specified how users should be prepared for transition. A major omission from protocols was procedures to ensure continuity of care for patients not accepted by AMHS. Conclusion: At least 13 transition protocols were in operation in Greater London in April 2005. Not all protocols meet all requirements set by government policy. Variation in protocol-sharing organisational units and transition process suggest that practice may vary. There is discontinuity of care provision for some patients who 'graduate' from CAMHS services but are not accepted by adult services

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

Background Healthcare 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. Methods A 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. Results Eighty 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. Conclusions There 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