BACKGROUND:Patients with life-limiting conditions are often cared for at home by family, typically without adequate training to carry out the challenging tasks performed. This systematic review assessed the efficacy of interventions designed to help family caregivers manage pain and other symptoms in adults and children with life-limiting conditions at home. METHODS:A systematic search was performed on seven databases. A narrative synthesis was conducted, along with a meta-analysis comparing outcomes in those who received an intervention to those who did not, or to preintervention scores. RESULTS:84 eligible studies were identified. Significant improvements in pain and fatigue in patients with cancer were found compared with patients in the control group and baseline. Caregivers of patients with cancer receiving an intervention, compared with the control group caregivers, showed significant improvements in self-efficacy and active coping and lower avoidant coping. This group also showed significant improvements in burden, self-efficacy, anxiety and depression, and decreases in avoidant coping pre- to post intervention. Patients with dementia whose caregivers received an intervention showed significantly reduced pain intensity and improvements in quality of life pre- to post intervention. Caregivers of patients with dementia showed significantly reduced distress pre- to post intervention. No beneficial effects were found for caregivers of patients with Parkinson's disease or heart failure, although only limited analyses could be performed. CONCLUSIONS:Interventions targeting family caregivers can improve both patient symptoms and caregiver outcomes, as demonstrated in cancer and dementia care. Future mixed-methods research should collect data from caregiver and patient dyads, identifying key intervention components. There is also need for more studies on caregivers of paediatric patients.

CONTEXTS:Inadequate pain management in community pediatric palliative care is common. Evidence to inform improved pain management in this population is limited.OBJECTIVES:To explore the barriers and facilitators to pediatric community-based pain management for infants, children and young people at end-of-life as perceived by healthcare professionals.METHODS:A qualitative interview study was conducted. Semi-structured interviews were undertaken with 29 healthcare professionals; 12 nurses, five GPs, five consultants and registrar doctors, two pharmacists and five support therapists working in primary, secondary or tertiary care in the United Kingdom and involved in community end-of life care of 0 to 18-year-olds.RESULTS:The data corpus was analyzed using an inductive thematic analysis and seven themes emerged: parents' abilities, beliefs and wellbeing; working relationships between families and healthcare professionals, and between healthcare teams; healthcare professionals' knowledge, education and experience; health services delivery; nature of pain treatment; and pediatric-specific factors. Across themes, the concepts of partnership working between families and healthcare professionals, and within healthcare teams, and sharing expertise were prevalent.CONCLUSION:Partnership working and trust between healthcare professionals and parents, and within healthcare teams, is needed for effective at-home pediatric palliative pain management. Community healthcare professionals require more education from experienced multidisciplinary teams to effectively manage pediatric pain at end-of-life and prevent emergency hospice or hospital admissions, particularly during the COVID-19 pandemic.

BackgroundInadequate pain management in community paediatric palliative care is common. Evidence to inform improved pain management in this population is limited.ObjectivesTo explore the barriers and facilitators to paediatric community-based pain management for infants, children and young people at end-of-life as perceived by healthcare professionals.MethodsSemi-structured qualitative interviews were conducted with 29 healthcare professionals;12 nurses, five GPs, five consultants and registrar doctors, two pharmacists and five support therapists working in primary, secondary or tertiary care in the UK and involved in community end-of-life care of 0–18-year-olds. The data corpus was analysed using an inductive thematic analysis.ResultsSeven themes emerged from the data: parents’ abilities, beliefs and wellbeing;working relationships between families and healthcare professionals, and between healthcare teams;healthcare professionals’ knowledge, education and experience;health services delivery;nature of pain treatment;and paediatric-specific factors. Across themes, the concepts of partnership working between families and healthcare professionals, and within healthcare teams, and sharing expertise were prevalent.ConclusionsIt is important that healthcare professionals and parents work together, and that mutual trust is built up through two-way conversations. Community healthcare professionals would benefit from education from experienced multidisciplinary teams to effectively manage paediatric pain at end-of-life and prevent emergency hospice or hospital admissions, particularly during the COVID-19 pandemic.

Background: Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges could inform the development of effective interventions. Aim: To investigate the barriers and facilitators experienced by patients, carers and healthcare professionals managing symptoms in infants, children and young people at end of life. Design: A mixed-methods systematic review and meta-analysis was undertaken (PROSPERO ID: CRD42019124797). Data sources: The Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey were electronically searched from the inception of each database for qualitative, quantitative or mixed-methods studies that included data from patients, carers or healthcare professionals referring to barriers or facilitators to paediatric end-of-life symptom management. Studies underwent data extraction, quality appraisal, narrative thematic synthesis and meta-analysis. Results: A total of 64 studies were included (32 quantitative, 18 qualitative and 14 mixed-methods) of medium-low quality. Themes were generated encompassing barriers/facilitators experienced by carers (treatment efficacy, treatment side effects, healthcare professionals’ attitudes, hospice care, home care, families’ symptom management strategies) and healthcare professionals (medicine access, treatment efficacy, healthcare professionals’ demographics, treatment side effects, specialist support, healthcare professionals’ training, health services delivery, home care). Only one study included patients’ views. Conclusion: There is a need for effective communication between healthcare professionals and families, more training for healthcare professionals, improved symptom management planning including anticipatory prescribing, and urgent attention paid to the patients’ perspective.

Background Around one in ten adults take antidepressants for depression in England, and their long-term use is increasing. Some need them to prevent relapse, but 30–50% could possibly stop them without relapsing and avoid adverse effects and complications of long-term use. However, stopping is not always easy due to withdrawal symptoms and a fear of relapse of depression. When general practitioners review patients on long-term antidepressants and recommend to those who are suitable to stop the medication, only 6–8% are able to stop. The Reviewing long-term antidepressant use by careful monitoring in everyday practice (REDUCE) research programme aims to identify safe and cost-effective ways of helping patients taking long-term antidepressants taper off treatment when appropriate. Methods Design: REDUCE is a two-arm, 1:1 parallel group randomised controlled trial, with randomisation clustered by participating family practices. Setting: England and north Wales. Population: patients taking antidepressants for longer than 1 year for a first episode of depression or longer than 2 years for repeated episodes of depression who are no longer depressed and want to try to taper off their antidepressant use. Intervention: provision of ‘ADvisor’ internet programmes to general practitioners or nurse practitioners and to patients designed to support antidepressant withdrawal, plus three patient telephone calls from a psychological wellbeing practitioner. The control arm receives usual care. Blinding of patients, practitioners and researchers is not possible in an open pragmatic trial, but statistical and health economic data analysts will remain blind to allocation. Outcome measures: the primary outcome is self-reported nine-item Patient Health Questionnaire at 6 months for depressive symptoms. Secondary outcomes: depressive symptoms at other follow-up time points, anxiety, discontinuation of antidepressants, social functioning, wellbeing, enablement, quality of life, satisfaction, and use of health services for costs. Sample size: 402 patients (201 intervention and 201 controls) from 134 general practices recruited over 15–18 months, and followed-up at 3, 6, 9 and 12 months. A qualitative process evaluation will be conducted through interviews with 15–20 patients and 15–20 practitioners in each arm to explore why the interventions were effective or not, depending on the results. Discussion Helping patients reduce and stop antidepressants is often challenging for practitioners and time-consuming for very busy primary care practices. If REDUCE provides evidence showing that access to internet and telephone support enables more patients to stop treatment without increasing depression we will try to implement the intervention throughout the National Health Service, publishing practical guidance for professionals and advice for patients to follow, publicised through patient support groups. Trial registration ISRCTN:12417565 . Registered on 7 October 2019.

Background Breakthrough pain is commonly experienced by both children and adults with cancer, and also by patients with other terminal conditions, including those approaching end-of-life. Management of breakthrough pain is often insufficient, which could be due in part to a current lack of validated assessment tools. The aims of this systematic review are to (1) identify all available instruments measuring breakthrough pain in infants, children, adolescents or adults, and (2) critically appraise, compare and summarise the quality of the measurement properties of each identified instrument using established COSMIN criteria. Methods Two searches were carried out, one corresponding to each aim of the review. For both, the Cochrane Library, PROSPERO, EMBASE, CINAHL, MEDLINE, PsychINFO, Web of Science Core Collection, Google Scholar, the ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey were searched from the inception of each database to October 2019. Search terms were derived from a thorough reading of relevant literature and in discussion with a medical librarian. Results Seven breakthrough pain tools were identified, only one of these - The Breakthrough Pain Questionnaire for Children - was designed for use in children. This tool, however, has not been validated to date. A further 40 studies were identified that used bespoke breakthrough pain assessment tools. Conclusion There is a lack of validated tools for assessing breakthrough pain, particularly in infants, children and young people. These are urgently needed so that the assessment and management of this distressing symptom can be further improved.

Background Managing symptoms, including pain, at end-of-life for infants, children and young people is challenging due to the broad spectrum of life-limiting or life-threatening conditions, and also differing care needs depending on patients’ age. The UK National Institute for Health and Care Excellence (NICE) highlights pain management in paediatric palliative care as a research priority. A clearer understanding of these challenges could inform the development of effective interventions. Aims We aimed to conduct a mixed-methods systematic review and meta-analysis investigating the barriers and facilitators experienced by patients, carers and healthcare professionals managing symptoms in infants, children and young people at end-of-life. Methods PROSPERO, Cochrane Library, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey were searched from the inception of each database for qualitative, quantitative or mixed-methods studies that included data regarding barriers or facilitators to paediatric end-of-life symptom management from patients, family carers or healthcare professionals. Search terms were derived from a thorough reading of relevant literature and in discussion with a medical librarian. Data extraction, quality appraisal, and narrative thematic synthesis were undertaken for all eligible studies, with meta-analysis also performed where data permitted. Results We identified 34 quantitative, 19 qualitative and 17 mixed-methods eligible studies of medium-low quality (assessed using GRADE-CERQual). Themes were generated around the barriers and facilitators experienced by family carers (Treatment efficacy, Treatment side-effects, Healthcare professionals’ attitudes, Hospice care, Homecare, Families’ symptom management strategies) and Healthcare professionals (Medicine access, Treatment efficacy, Healthcare professionals’ demographics, Treatment side-effects, Specialist support, Healthcare professionals’ training, Health services delivery, Homecare). Only one study included patients’ views. Caring at home for a child was reported as a barrier to symptom management by between 22 and 24% of participants (pooled weighted mean of 0.244, k = 3, n = 197, 95% CI = 0.177–0.326). Conclusions This review highlights the need for clear communication within and between healthcare professionals and families; more training for healthcare professionals and improved symptom management planning, including anticipatory prescribing. There is an urgent need for more research into children and young people’s experience of symptom management at end-of-life.

Perceived self-efficacy is the belief that one can manage prospective situations. Good asthma self-management self-efficacy is associated with better asthma outcomes. However, a well-developed and validated tool to measure adolescent asthma self-management self-efficacy is lacking. Our objective was to develop and validate an Adolescent Asthma Self-Efficacy Questionnaire (AASEQ). The first stage of the study included a review of the literature, interviews with adolescents with asthma and consultations with parents and relevant healthcare professionals to develop a prototype scale. To assess reliability and validity, a further group of adolescents completed the prototype scale, the General Self-Efficacy Scale and KidCOPE (measures coping styles). Retesting was undertaken to assess longitudinal validity. Interviews with 28 adolescents and consultations with other stakeholders resulted in a 38-item prototype scale. Key themes were medication, symptom management, triggers, knowledge, attitude and beliefs around asthma, supportive relationships, schools and healthcare professionals. The prototype scale was completed by 243 adolescents. Factor and reliability analysis reduced it to a 27-item scale with four subsections: symptom management; medication; friends, family and school; and asthma beliefs. The 27-item scale had respectable to excellent internal consistency (α's 0.78–0.91) with results that were stable over time (intra-class correlation=0.82) in 63 subjects who completed it twice. Better adolescent asthma self-efficacy was associated with better general self-efficacy and indices of better asthma management. The AASEQ is a reliable and valid tool that is likely to aid future research and practice focused on adolescent asthma self-management and could be a useful intermediate outcome measure to assess the impact of behavioural interventions.

INTRODUCTION:This protocol describes the objective and methods of a systematic review of barriers and facilitators experienced by patients, carers and healthcare professionals when managing symptoms in infants, children and young people (ICYP) at end-of-life.METHODS AND ANALYSIS:The Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey will be electronically searched. Reference screening of relevant articles and inquiries to researchers in the field will be undertaken. Studies will be selected if they apply qualitative, quantitative or mixed-methods designs to explore barriers and facilitators experienced by patients, carers and healthcare professionals when managing symptoms in ICYP at end-of-life.Articles will be screened by title and abstract by one reviewer with a second reviewer assessing 10% of the articles. Both reviewers will read and screen all remaining potentially relevant articles. For included articles, one reviewer will extract study characteristics and one will check this.Both reviewers will undertake independent quality assessments of included studies using established and appropriate checklists including The Critical Appraisal Skills Programme Qualitative Checklist; The evaluative criteria of credibility, transferability, dependability and confirmability; The Quality Assessment Tool for Quantitative Studies, and The Mixed Methods Appraisal Tool. Data synthesis methods will be decided after data extraction and assessment.ETHICS AND DISSEMINATION:This review will inform our understanding of symptom management in ICYP at end-of-life. The findings will be reported in a peer-reviewed journal and presented at conferences. The study raises no ethical issues.PROSPERO REGISTRATION NUMBER:CRD42019124797.

BACKGROUND AND OBJECTIVE:Despite literature that spans twenty years describing the barriers to asthma self-management in adolescents, successful, clinically based interventions to address this important issue are lacking. Given the limitations of some of the previous studies, we conducted a study that aimed to gain a broader insight into barriers and facilitators to self-management of asthma by adolescents, not just adherence to treatment, and triangulated their views with those of their parents and healthcare professionals.METHODS:Focus groups and interviews were conducted separately for 28 adolescents with asthma aged 12-18 years, 14 healthcare professionals and 12 parents. Focus groups and interviews were audio-recorded, and transcripts from each participant group were analysed separately using inductive thematic analysis. We triangulated the three perspectives by comparing themes that had emerged from each analysis.RESULTS:Adolescents', parents' and healthcare professionals' views were summarized into ten related themes that included forgetting and routines, knowledge, embarrassment and confidence, communication with healthcare professionals, triggers, support at school, apathy and taking responsibility. We found that adolescents, parents and healthcare professionals raised similar barriers and facilitators to self-management and our results provide further validation for previous studies.CONCLUSION AND CLINICAL RELEVANCE:Our study highlights that healthcare professionals may need to consider a range of psychological and contextual issues influencing adolescents' ability to effectively self-manage their asthma, in particular, how they implement treatment routines and the understanding that adolescents have of their condition and treatments. Crucially, healthcare professionals need to consider how this information is communicated and ensure they facilitate open, inclusive, two-way consultations. From this more comprehensive understanding, we have developed interventional strategies that healthcare professionals can utilize to empower adolescents to improve their asthma self-management.

BACKGROUND:Many adolescents have poor asthma control and impaired quality of life despite the availability of modern pharmacotherapy. Research suggests that poor adherence to treatment and limited engagement in self-management could be contributing factors. OBJECTIVE:To conduct a systematic review of the barriers and facilitators to self-management of asthma reported by adolescents using a narrative synthesis approach to integrate the findings. DESIGN:MEDLINE, EMBASE, CINAHL, and PsycINFO were searched for all types of study design. Full papers were retrieved for study abstracts that included data from participants aged 12-18 years referring to barriers or facilitators of asthma self-management behaviors. RESULTS:Sixteen studies (5 quantitative and 11 qualitative) underwent data extraction, quality appraisal, and thematic analysis. Six key themes were generated that encompassed barriers and/or facilitators to self-management of asthma in adolescents: Knowledge, Lifestyle, Beliefs and Attitudes, Relationships, Intrapersonal Characteristics, and Communication. CONCLUSIONS:There is a pressing need to prepare adolescents for self-management, using age-appropriate strategies that draw on the evidence we have synthesized. Current clinical practice should focus on ensuring adolescents have the correct knowledge, beliefs, and positive attitude to self-manage their illness. This needs to be delivered in a supportive environment that facilitates two-way communication, fosters adolescents' self-efficacy to manage their disease, and considers the wider social influences that impinge on self-management. Pediatr Pulmonol. 2017;52:430-442. © 2016 Wiley Periodicals, Inc.

Introduction: This research sought to explore and categorise goals set by children and young people, parents/caregivers and jointly by a combination of children/young people, parents/caregivers and/or clinicians within mental health settings across the United Kingdom. Method: Using a dataset of 441 goals formed at the outset of 180 treatment episodes (2007–2010) from UK child mental health services using the Goal-Based Outcomes tool, a grounded theory approach was taken, which built on previous research into child-rated goals to develop frameworks for parent and joint goal data which were then compared with the child goal data. Results: A total of 19 subthemes and four overarching themes were identified for parent goals. A total of 19 subthemes in five overarching themes were identified for joint goals. These were compared with 25 subthemes and three overarching themes for child goals. A comparison of subthemes between parent, child and joint goals demonstrated many consistencies, but also differences. Most commonly rated goals from children focused on coping with specific difficulties, personal growth and independence. Parent goals focused mainly on managing specific difficulties, parent-specific goals and improving self or life. Jointly negotiated goals focused on parent-specific goals, self-confidence and understanding, hopes for the future and managing specific problems. Conclusion: The results suggest that goals may capture areas not captured by other normed outcome measures. In particular, goals may capture higher order, underlying factors, such as confidence, resilience, coping, and parenting factors that may not be explored by other measures. The differences across perspectives also link to existing literature suggesting a different focus on treatment based on perspectives and highlights the potential importance when jointly agreeing goals of ensuring the voice of the child/young person is heard and included in goal setting.

PURPOSE:To examine the changes in mental health difficulties in early adolescence between 2009 and 2014 in England. METHODS:Analysis reports on data from two cross-sectional samples of adolescents (aged 11-13 years) collected 5 years apart in 2009 and 2014 in secondary schools across England. Samples were matched using propensity scoring, resulting in a total pooled sample of 3,366 adolescents. Mental health difficulties were reported by participants using the Strengths and Difficulties Questionnaire. RESULTS:Overall, there were similar levels of mental health difficulties experienced by adolescents in 2009 and 2014. Notable exceptions were a significant increase in emotional problems in girls and a decrease in total difficulties in boys in 2014 compared to 2009. CONCLUSIONS:The increased prevalence of emotional problems in girls mirrors a trend found in other similar studies, and the results are discussed in the context of recent economic and societal changes. The small decrease in total difficulties in boys, although promising, clearly warrants further research.

Pediatric epilepsy has been reported to be associated with both sleep problems and cognitive deficits. In turn, in healthy children, poorer sleep has been associated with deficits in cognitive functioning. We hypothesized that poor sleep in childhood epilepsy may contribute to cognitive deficits. Using actigraphy, we objectively measured the sleep of children with epilepsy alongside that of healthy controls. In contrast to previous reports, we did not find any differences in objectively measured sleep between children with epilepsy and healthy controls. However, significant deficits in cognitive functioning were demonstrated that were not explained by differences in sleep.

Abstract Aim: To compare sleep problems in children with cerebral palsy to typically developing children. To study the relationship between sleep problems in children with cerebral palsy and maternal sleep quality and depression. Methods: Fifty-seven children with cerebral palsy aged 4–12 years were identified from a UK disability database. Maternal sleep disturbance and mood were assessed using the Pittsburgh Sleep Quality Index and the Major Depression Inventory. Child sleep problems, assessed with the Children’s Sleep Habits Questionnaire, but not maternal variables, were compared to 102 typically developing children. Results: Forty children (70%) were recruited with a mean age of 7.8 (SD 2.4). Sleep anxiety, night wakings, parasomnias and sleep-disordered breathing sub-scales indicated significantly more difficulties than in typically developing children. 40% of mothers of children with cerebral palsy had poor sleep quality of whom 44% had depressed mood. Child and maternal sleep disturbance were significantly correlated. Maternal sleep quality predicted 50% of the variance in maternal depression. Conclusions: Children with cerebral palsy have more sleep problems than typically developing peers. Their mothers also have disturbed sleep that correlates with maternal depression. Childhood sleep problems can be treated and should be identified in routine clinical practice.

Sleep is a learned behaviour. Babies need to learn to self-soothe to sleep at the start of the night. Waking up at night is a normal part of sleep. Crying for parental attention is a learned behaviour unless the child needs feeding or has a medical problem. Children need healthy sleep environments, appropriate diets, exercise in the day and a bedtime routine to experience optimal sleep. Twenty to thirty percent of parents and carers report that their child has difficulty falling asleep or staying asleep. Sleep problems can have a detrimental effect on children's daytime behaviour and mental health. As children do not always grow out of their sleep problems these problems should be addressed. Careful assessment is required to identify the underlying cause of the sleep problem.

Aim: To compare sleep problems in children with cerebral palsy to typically developing children. To study the relationship between sleep problems in children with cerebral palsy and maternal sleep quality and depression. Methods: Fifty-seven children with cerebral palsy aged 412 years were identified from a UK disability database. Maternal sleep disturbance and mood were assessed using the Pittsburgh Sleep Quality Index and the Major Depression Inventory. Child sleep problems, assessed with the Childrens Sleep Habits Questionnaire, but not maternal variables, were compared to 102 typically developing children. Results: Forty children (70%) were recruited with a mean age of 7.8 (SD 2.4). Sleep anxiety, night wakings, parasomnias and sleep-disordered breathing sub-scales indicated significantly more difficulties than in typically developing children. 40% of mothers of children with cerebral palsy had poor sleep quality of whom 44% had depressed mood. Child and maternal sleep disturbance were significantly correlated. Maternal sleep quality predicted 50% of the variance in maternal depression. Conclusions: Children with cerebral palsy have more sleep problems than typically developing peers. Their mothers also have disturbed sleep that correlates with maternal depression. Childhood sleep problems can be treated and should be identified in routine clinical practice.

BACKGROUND:There is emerging evidence that sleep problems in childhood may have enduring consequences. Studies using parental and objective sleep measurement suggest that sleep difficulties in children may be associated with behavioural problems. However, the findings using objective sleep measures are inconsistent and it is not clear what aspects of sleep quality are associated with daytime behavioural difficulties. The aim of this paper is to identify which behavioural symptoms are best predicted by actigraphic sleep measures in a general population sample of school-aged children aged 6-11 years.METHODS:Actigraphy was used to measure sleep in 91 typically developing children aged 6-11 years for 6 days. Parents completed the Strengths and Difficulties Questionnaire (SDQ). A series of multivariate linear regression models were computed to analyse the effects of sleep on SDQ subscales.RESULTS:Sleep did not predict emotional symptoms or hyperactivity. After controlling for age and gender, sleep accounted for 18% of the variance in conduct problems. Only actual sleep time in minutes made a significant contribution to the model.CONCLUSIONS:A child who sleeps 1 h less than the average child may be at risk of conduct problems. Clinicians should consider routinely screening for sleep difficulties when assessing children with conduct problems.

There are limited published data comparing the information provided by parental reports of sleep habits with actigraphic information. This study compares parental report of sleep habits using the Children's Sleep Habits Questionnaire with actigraphic data in 91 typically developing children aged 6 to 11 years. The study found that sleep duration (as measured using actigraphy [ACT]) was longer in children whose parents rated their child as having enough sleep. Parental reports of night wakings did not correspond with ACT measures of night wakings. The findings show that ACT and parental reports provide differing,but complimentary,information about a child's sleep habits.