Inequalities in emergency care use across transition from paediatric to adult care: a retrospective cohort study of young people with chronic kidney disease in England.

Transition of young people with chronic kidney disease (CKD) from paediatric to adult healthcare has been associated with poor outcomes, but few population-level studies examine trends in subgroups. We aimed to assess sociodemographic inequalities in changes in unplanned secondary care utilisation occurring across transfer to adult care for people with CKD in England. A cohort was constructed from routine healthcare administrative data in England of young people with childhood-diagnosed CKD who transitioned to adult care. The primary outcome was the number of emergency inpatient admissions and accident and emergency department (A&E) attendances per person year, compared before and after transfer. Injury-related and maternity admissions were excluded. Outcomes were compared via sociodemographic data using negative binomial regression with random effects. The cohort included 4505 individuals. Controlling for age, birth year, age at transfer, region and sociodemographic factors, transfer was associated with a significant decrease in emergency admissions (IRR 0.75, 95% CI 0.64-0.88) and no significant change in A&E attendances (IRR 1.10, 95% CI 0.95-1.27). Female sex was associated with static admissions and increased A&E attendances with transfer, with higher admissions and A&E attendances compared to males pre-transfer. Non-white ethnicities and higher deprivation were associated with higher unplanned secondary care use. CONCLUSION:  Sociodemographic inequalities in emergency secondary care usage were evident in this cohort across the transition period, independent of age, with some variation between admissions and A&E use, and evidence of effect modification by transfer. Such inequalities likely have multifactorial origin, but importantly, could represent differential meetings of care needs. WHAT IS KNOWN: • In chronic kidney disease (CKD), transfer from paediatric to adult healthcare is associated with declining health outcomes. • Known differences in CKD outcomes by sociodemographic factors have limited prior exploration in the context of transfer. WHAT IS NEW: • Population-level data was used to examine the impacts of transfer and sociodemographic factors on unplanned secondary care utilisation in CKD. • Healthcare utilisation trends may not reflect known CKD pathophysiology and there may be unexplored sociodemographic inequalities in the experiences of young people across transfer.

Experiences of music therapy in paediatric palliative care from multiple stakeholder perspectives: A systematic review and qualitative evidence synthesis.

BACKGROUND: Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised qualitative research about how music therapy is experienced by children, young people and their families supported by paediatric palliative care services. AIM: To systematically identify and synthesise qualitative research on experiences of music therapy in paediatric palliative care from stakeholder perspectives. DESIGN: A Qualitative Evidence Synthesis was conducted using Thematic Synthesis. The review protocol was registered in PROSPERO (registration number: CRD42021251025). DATA SOURCES: Searches were conducted with no dates imposed via the electronic databases PsycINFO, MEDLINE, EMBASE, AMED and CINAHL in April 2021 and updated in April 2022. Studies were appraised for quality using the Critical Appraisal Skills Programme tool (CASP). RESULTS: A total of 148 studies were found, 5 studies met the eligibility criteria reporting the experiences of 14 mothers, 24 family members and 4 staff members in paediatric palliative care. There were five overarching themes: emotional and physical reprieve, opportunity for normalised experiences, thriving despite life limited condition, enhance family wellbeing and therapeutic relationship central to outcomes. CONCLUSION: Music therapy provides unique benefits for this paediatric population particularly in supporting child and family wellbeing. The therapeutic relationship, interpersonal skills of the therapist and experience in paediatric palliative care are perceived as central to these positive outcomes.

Assessing the suitability of the Carer Support Needs Assessment Tool (CSNAT-Paediatric) for use with parents of children with a life-limiting condition: A qualitative secondary analysis.

BACKGROUND: The demands of caring for a child with a life-limiting condition can have a profound impact on parents' health and wellbeing. Currently, there is no standard procedure for identifying and addressing the support needs of these parents. AIM: To assess the suitability of the Carer Support Needs Assessment Tool (CSNAT (Paediatric)) for use with parents of children with a life-limiting condition. DESIGN: Secondary qualitative content analysis of two qualitative datasets exploring the health, wellbeing and experiences of support of mothers and fathers of children with a life-limiting condition. SETTING: A total of 30 mothers and 12 fathers were recruited via four UK children's hospices and social media. RESULTS: Parental experiences of support mapped onto the existing domains of the CSNAT (Paediatric). One aspect of their experience, surrounding their child's educational needs, went beyond the existing domains of the CSNAT. An adapted version of the tool CSNAT (Paediatric) should include this domain. CONCLUSION: The CSNAT (Paediatric) is a relevant tool for the assessment of parental support needs. Further research should assess the acceptability and feasibility of implementation of the broader intervention: CSNAT-I (Paediatric).

Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers.

BACKGROUND: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. AIM: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability. DESIGN: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques. SETTING/PARTICIPANTS: Children 5-⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites. RESULTS: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important. CONCLUSION: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice.

What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders.

BACKGROUND: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. AIM: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. DESIGN: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. SETTING/PARTICIPANTS: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children's hospices and n = 12 Commissioners of health services. RESULTS: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional. CONCLUSIONS: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.

'My life is a mess but I cope': An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition.

BACKGROUND: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child. AIM: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities. DESIGN: Positioned within a social constructivist paradigm, a secondary discourse analysis of semi-structured interview data was conducted incorporating the discourse dynamics approach for figurative language. SETTING/PARTICIPANTS: A total of 26 children and young people aged 5-17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations. RESULTS: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions. CONCLUSION/DISCUSSION: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities.

Incidence of anxiety and depression in children and young people with life-limiting conditions.

BACKGROUND: The aim of this study was to investigate the incidence of anxiety and depression in children and young people with life-limiting conditions. METHODS: A comparative cohort study was conducted, using primary and secondary care data from the Clinical Practice Research Datalink (CPRD) in England. Anxiety and depression codes were identified using diagnostic, symptom and prescription codes. Incidence rates of anxiety and depression were compared across condition groups using Poisson regression, adjusting for sex, age, ethnicity, and deprivation status. RESULTS: A total of 25,313 children and young people were included in the study: 5527 with life-limiting conditions, 6729 with chronic conditions, and 13,057 with no long-term conditions. The incidence of anxiety (IRRadj: 1.39, 95% CI: 1.09-1.77) and depression (IRRadj: 1.41, 95% CI: 1.08-1.83) was significantly higher in children and young people with life-limiting conditions, compared to children and young people with no long-term conditions. CONCLUSIONS: The higher incidence of anxiety and depression observed among children and young people with life-limiting conditions highlights the need for psychological support in this population, including further efforts to prevent, identify, and treat anxiety and depression. IMPACT: The analysis of primary and secondary healthcare data from England revealed that the incidence of anxiety and depression was higher among children and young people with life-limiting conditions, compared to those with no long-term conditions. This is the first study to investigate the incidence of anxiety and depression in children and young people with a wide range of life-limiting conditions. The higher incidence of anxiety and depression observed in children and young people with life-limiting conditions highlights the need for psychological support aiming to prevent, identify, and treat anxiety and depression in this population group.

Adaptation and multicentre validation of a patient-centred outcome scale for people severely ill with COVID (IPOS-COV).

BACKGROUND: Patient-centred measures to capture symptoms and concerns have rarely been reported in severe COVID. We adapted and tested the measurement properties of the proxy version of the Integrated Palliative care Outcome Scale-IPOS-COV for severe COVID using psychometric approach. METHODS: We consulted experts and followed consensus-based standards for the selection of health status measurement instruments and United States Food and Drug Administration guidance for adaptation and analysis. Exploratory Factor Analysis and clinical perspective informed subscales. We tested the internal consistency reliability, calculated item total correlations, examined re-test reliability in stable patients, and also evaluated inter-rater reproducibility. We examined convergent and divergent validity of IPOS-COV with the Australia-modified Karnofsky Performance Scale and evaluated known-groups validity. Ability to detect change was examined. RESULTS: In the adaptation phase, 6 new items were added, 7 items were removed from the original measure. The recall period was revised to be the last 12-24 h to capture fast deterioration in COVID. General format and response options of the original Integrated Palliative care Outcome Scale were preserved. Data from 572 patients with COVID from across England and Wales seen by palliative care services were included. Four subscales were supported by the 4-factor solution explaining 53.5% of total variance. Breathlessness-Agitation and Gastro-intestinal subscales demonstrated good reliability with high to moderate (a = 0.70 and a = 0.67) internal consistency, and item-total correlations (0.62-0.21). All except the Flu subscale discriminated well between patients with differing disease severity. Inter-rater reliability was fair with ICC of 0.40 (0.3-0.5, 95% CI, n = 324). Correlations between the subscales and AKPS as predicted were weak (r = 0.13-0.26) but significant (p < 0.01). Breathlessness-Agitation and Drowsiness-Delirium subscales demonstrated good divergent validity. Patients with low oxygen saturation had higher mean Breathlessness-Agitation scores (M = 5.3) than those with normal levels (M = 3.4), t = 6.4 (186), p < 0.001. Change in Drowsiness-Delirium subscale correctly classified patients who died. CONCLUSIONS: IPOS-COV is the first patient-centred measure adapted for severe COVID to support timely management. Future studies could further evaluate its responsiveness and clinical utility with clinimetric approaches.

Hospital admissions of school-age children with an intellectual disability: A population-based survey.

AIM: To describe the profiles of hospital admissions of school-age children identified with a learning disability (ICD-11 intellectual developmental disorder) and/or safeguarding needs compared to children without learning disability, in a population where proactive identification of learning disabilities in children is embedded in practice. METHOD: Data were collected about the reasons for and duration of hospital admissions of school-age children living in the study catchment area between April 2017 and March 2019; the presence (or absence) of learning disability and/or safeguarding flags in the medical record was also noted. The impact of the presence of flags on the outcomes was explored using negative binomial regression modelling. RESULTS: Of 46 295 children in the local population, 1171 (2.53%) had a learning disability flag. The admissions of 4057 children were analysed (1956 females; age range 5-16 years, mean 10 years 6 months, SD 3 years 8 months). Of these, 221 out of 4057 (5.5%) had a learning disability, 443 out of 4057 (10.9%) had safeguarding flags, 43 out of 4057 (1.1%) had both, and 3436 out of 4057 (84.7%) had neither. There was a significantly increased incidence of hospital admissions and length of stay in children with either or both flags, compared to children with neither. INTERPRETATION: Children with learning disabilities and/or safeguarding needs have higher rates of hospital admissions than children without. Robust identification of learning disabilities in childhood is required to make the needs of this group visible in routinely collected data as the first step towards needs being appropriately addressed. WHAT THIS PAPER ADDS: Children with learning disabilities must be consistently identified in populations so that their needs are made visible. Information about these needs must be collected from educational, health, and social care sources and scrutinized systematically. Children with learning disabilities and safeguarding needs have an increased incidence of hospital admissions and length of stay.

'YourTube' the role of different diets in gastrostomy-fed children: Baseline findings from a prospective cohort study.

AIM: To assess the risks, benefits, and resource implications of home-blended food for children with gastrostomy tubes compared with a formula diet. METHOD: This prospective cohort study of children (aged 0-18 years) collected baseline data on gastrointestinal symptoms, nutritional intake, anthropometric outcomes, parent and child quality of life, and resource use. A propensity score-weighted generalized linear mixed model was used to compare children receiving a home-blended versus formula diet. RESULTS: Baseline data were obtained for 180 children (2019-2021; 107 males, 73 females; mean age 9 years 7 months [SD 4 years 5 months]). Children receiving a home-blended diet (n = 104) had similar diagnoses and age but more lived in areas of lower deprivation and parental education was higher compared to the parents of children receiving a formula diet (n = 76). Children receiving home-blended diets had significantly better gastrointestinal scores than those receiving formula diets (B = 13.8, p < 0.001). The number of gut infections and tube blockages were similar between the two groups but with fewer stoma site infections in the group receiving home-blended food. Children receiving a home-blended diet had more fibre in their diet compared to children receiving a formula diet. INTERPRETATION: Home-blended diets should be seen as a safe option for children who are gastrostomy-fed unless clinically contraindicated. Equality of access to home-blended diets for children with gastrostomy should be assessed by local clinical teams.

Understanding parent experiences of end-of-life care for children: A systematic review and qualitative evidence synthesis.

BACKGROUND: An estimated 21 million children worldwide would benefit from palliative care input and over 7 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support. There is a lack of synthesised research about how parents experience the care delivered to their child at the end of life. AIM: To systematically identify and synthesise qualitative research on parents' experiences of end-of-life care of their child. DESIGN: A qualitative evidence synthesis was conducted. The review protocol was registered in PROSPERO (CRD42021242946). DATA SOURCES: MEDLINE, EMBASE, CINAHL, PsycINFO and Web of Science databases were searched for qualitative studies published post-2000 to April 2020. Studies were appraised for methodological quality and data richness. Confidence in findings was assessed by GRADE-CERQual. RESULTS: About 95 studies met the eligibility criteria. A purposive sample of 25 studies was taken, of good-quality papers with rich data describing the experience of over 470 parents. There were two overarching themes: parents of children receiving end-of-life care experienced a profound need to fulfil the parental role; and care of the parent. Subthemes included establishing their role, maintaining identity, ultimate responsibility, reconstructing the parental role, and continuing parenting after death. CONCLUSIONS: Services delivering end-of-life care for children need to recognise the importance for parents of being able to fulfil their parental role and consider how they enable this. What the parental role consists of, and how it's expressed, differs for individuals. Guidance should acknowledge the need to enable parents to parent at their child's end of life.

What does 'good' palliative care look like for children and young people? A qualitative study of parents' experiences and perspectives.

BACKGROUND: Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and what is being done, in clinical practice. In 2017, the National Institute for Health and Care Excellence (NICE) introduced a quality standard, to standardise and improve children's palliative care in England. However, there is little evidence about what good experiences of palliative care for children are, and how they relate to the quality standard for end-of-life care. AIM: This study explored how the NICE quality standard featured in parental experiences of palliative care for children to understand what 'good' palliative care is. DESIGN: Qualitative study, employing in-depth, telephone and video-call, semi-structured interviews. Data were analysed using thematic analysis, informed by Appreciative Inquiry. SETTING/PARTICIPANTS: Participants were parents of children and young people (aged 0-17 years) in England, who were receiving palliative care, and parents whose child had died. RESULTS: Fourteen mothers and three fathers were interviewed. Seven were bereaved. Parents were recruited via four children's hospices, one hospital, and via social media. Good palliative care is co-led and co-planned with trusted professionals; is integrated, responsive and flexible; encompasses the whole family; and enables parents to not only care for, but also to parent their child to end of life. CONCLUSIONS: Findings have implications for informing evidence based practice and clinical guidelines, overall improving experiences of care.

Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study.

BACKGROUND: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer. AIM: To identify the spiritual needs of children with life-limiting and life-threatening conditions. DESIGN: Cross-sectional semi-structured, qualitative interview study with children, families and health and social care professionals. Verbatim transcripts were analysed using Framework analysis. SETTING/PARTICIPANTS: Purposively sampled children with life-limiting and life-threatening conditions, their parents and siblings, health and social care professionals recruited from six hospitals and three children's hospices in the UK, and commissioners of paediatric palliative care services recruited through networks and a national charity. RESULTS: One hundred six participants were interviewed: 26 children (5-17 years), 53 family members (parents/carers of children 0-17 years and siblings (5-17 years)), 27 professionals (health and social care professionals and commissioners of paediatric palliative care). Themes included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. Children as young as 5 years old identified needs or concerns in the spiritual domain of care. CONCLUSIONS: Addressing spiritual concerns is essential to providing child- and family-centred palliative care. Eliciting spiritual concerns may enable health and social care professionals to identify the things that can support and enhance a meaningful life and legacy for children and their families.

Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children's research involvement group and expert item generation.

BACKGROUND: There is no validated outcome measure for use in children's palliative care outside sub-Saharan Africa. Stakeholders must be involved in the development of such measures to ensure face and content validity. AIM: To gain expert stakeholder consensus on items for inclusion in a paediatric palliative care outcome measure to establish face and content validity. DESIGN: This study was conducted in two phases following Rothrock and COSMIN guidance on patient-reported outcome measure development. Phase 1: Three-round modified Delphi survey to establish consensus on priority items. Phase 2: Item generation meeting with key stakeholders to develop initial measure versions. A young person's advisory group was also consulted on priority outcomes. SETTING AND PARTICIPANTS: Delphi survey: Parents and professionals with experience of caring for a child with a life-limiting condition. Young person's advisory group: young people age 10-20 years. Item generation meeting: bereaved parents, academics and clinicians. RESULTS: Phase 1: Delphi survey (n = 82). Agreement increased from Kendall's W = 0.17 to W = 0.61, indicating movement towards consensus. Agreement between professional and parent ranking was poor (Cohen's kappa 0.13). Professionals prioritised physical symptoms, whereas parents prioritised psychosocial and practical concerns. Advisory group: Children (n = 22) prioritised items related to living a 'normal life' in addition to items prioritised by adult participants. Phase 2: Five age/developmental stage appropriate child and proxy-reported versions of C-POS, containing 13 items, were drafted. CONCLUSIONS: This study highlights the importance and feasibility of involving key stakeholders in PROM item generation, as important differences were found in the priority outcomes identified by children, parents and professionals.

Deaths at home, area-based deprivation and the effect of the Covid-19 pandemic: An analysis of mortality data across four nations.

BACKGROUND: The number and proportion of home deaths in the UK increased during the Covid-19 pandemic. It is not known whether these changes were experienced disproportionately by people from different socioeconomic groups. AIM: To examine the association between home death and socioeconomic position during the Covid-19 pandemic, and how this changed between 2019 and 2020. DESIGN: Retrospective cohort study using population-based individual-level mortality data. SETTING/PARTICIPANTS: All registered deaths in England, Wales, Scotland and Northern Ireland. The proportion of home deaths between 28th March and 31st December 2020 was compared with the same period in 2019. We used Poisson regression models to evaluate the association between decedent's area-based level of deprivation and risk of home death, as well as the interaction between deprivation and year of death, for each nation separately. RESULTS: Between the 28th March and 31st December 2020, 409,718 deaths were recorded in England, 46,372 in Scotland, 26,410 in Wales and 13,404 in Northern Ireland. All four nations showed an increase in the adjusted proportion of home deaths between 2019 and 2020, ranging from 21 to 28%. This increase was lowest for people living in the most deprived areas in all nations, with evidence of a deprivation gradient in England. CONCLUSIONS: The Covid-19 pandemic exacerbated a previously described socioeconomic inequality in place of death in the UK. Further research to understand the reasons for this change and if this inequality has been sustained is needed.

A new scale assessing the stressors and rewards of children's hospice work.

BACKGROUND: There is a workforce shortage in the children's hospice sector, but there has been little research on the specific challenges of working in this setting and on how these challenges might be alleviated. To identify appropriate interventions to improve staff wellbeing, the drivers of wellbeing in children's hospices need to be known and measured. This paper reports on the development of two measures, one for work-related rewards and one for work-related stressors, for use in children's hospice care teams. METHODS: A mixed-methods, four-stage study; the first three phases focused on the development of the scales, and the last stage focused on the validation of the scales. Participants of all stages were children's hospice care team staff members in the UK. Stage 1: survey assessing the relevance and comprehensiveness of the original scale items (N = 60); Stages 2 (focus groups; N = 16) and 3 (cognitive interviews; N = 14) to assess content validity; Stage 4: UK-wide survey (N = 414) to validate the final version of the new, children's hospice-specific scales using Rasch Analysis (RA) and Confirmatory Factor Analysis (CFA). RESULTS: Due to poor fitting indices shown in the results from the RA, five items (out of 36) were removed from the new rewards scale used in the UK-wide survey and 20 (out of 62) were removed from the new stressors scale. CFA also supported the removal of the items and showed a one-factor structure for the rewards scale and a three-factor structure for the stressors scale were adequate-the sub-scales for the stressors scale related to caring for an ill or dying child ("Child" sub-scale), working with parents and families ("Parent" sub-scale), and stressors related to organisational factors, such as team conflict and workload ("Organisation" sub-scale). CONCLUSIONS: Both of the new scales showed good psychometric properties and can be useful in clinical settings and research to assess the perceived intensity of the work-related rewards and stressors for children's hospice staff.

Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study.

BACKGROUND: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative study aimed to explore regional perspectives of the successes, and challenges to the equitable coordination and delivery of end-of-life care for children in the UK. The study provides an overarching perspective on the challenges of delivering and coordinating end-of-life care for children in the UK, and the impact of these on health professionals and organisations. Previous research has not highlighted the successes in the sector, such as the formal and informal coordination of care between different services and sectors. METHODS: Semi-structured interviews with Chairs of the regional Palliative Care Networks across the UK. Chairs or co-Chairs (n = 19) of 15/16 Networks were interviewed between October-December 2021. Data were analysed using thematic analysis. RESULTS: Three main themes were identified: one standalone theme ("Communication during end-of-life care"); and two overarching themes ("Getting end-of-life services and staff in the right place", with two themes: "Access to, and staffing of end-of-life care" and "Inconsistent and insufficient funding for end-of-life care services"; and "Linking up healthcare provision", with three sub-themes: "Coordination successes", "Role of the networks", and "Coordination challenges"). Good end-of-life care was facilitated through collaborative and network approaches to service provision, and effective communication with families. The implementation of 24/7 advice lines and the formalisation of joint-working arrangements were highlighted as a way to address the current challenges in the specialism. CONCLUSIONS: Findings demonstrate how informal and formal relationships between organisations and individuals, enabled early communication with families, and collaborative working with specialist services. Formalising these could increase knowledge and awareness of end of life care, improve staff confidence, and overall improve professionals' experiences of delivering care, and families' experiences of receiving it. There are considerable positives that come from collaborative working between different organisations and sectors, and care could be improved if these approaches are funded and formalised. There needs to be consistent funding for paediatric palliative care and there is a clear need for education and training to improve staff knowledge and confidence.

Work-related resources and demands predicting the psychological well-being of staff in children's hospices.

OBJECTIVES: This study assessed the work-related resources and demands experienced by children's hospice staff to help identify staff support systems and organizational practices that offer the most potential to prevent staff burnout and enhance well-being at work. METHODS: The relationships between individual and organizational characteristics, work-related resources and demands, and burnout and work engagement outcomes experienced by children's hospice staff were explored using two surveys: the Children's Hospice Staff survey, completed by UK children's hospice staff, and the Children's Hospice Organisation and Management survey, completed by the Heads of Care. We used structural equation modeling to assess the relationships between the variables derived from the survey measures and to test a model underpinned by the Job Demands-Resource (JD-R) theory. RESULTS: There were 583 staff responses from 32 hospices, and 414 participants provided valid data for burnout and work engagement outcome measures. Most participants were females (95.4%), aged 51-65 years old (31.3%), and had more than 15 years of experience in life-limiting conditions (29.7%). The average score for burnout was 32.5 (SD: 13.1), and the average score for work engagement was 7.5 (SD: 1.5). The structural model validity showed good fit. Demands significantly predicted burnout (b = 4.65, p ≤ 0.001), and resources predicted work engagement (b = 3.09, p ≤ 0.001). The interaction between resources and demands only predicted work engagement (b = -0.31, p = 0.115). Burnout did not predict work engagement (b = -0.09, p = 0.194). SIGNIFICANCE OF RESULTS: The results partly supported the JD-R model, with a clear association between resources and work engagement, even when the demands were considered. Demands were only directly associated with burnout. The findings also identified a set of the most relevant aspects related to resources and demands, which can be used to assess and improve staff psychological well-being in children's hospices in the UK.

Adult healthcare is associated with more emergency healthcare for young people with life-limiting conditions.

BACKGROUND: Children with life-limiting conditions receive specialist paediatric care in childhood, but the transition to adult care during adolescence. There are concerns about transition, including a lack of continuity in care and that it may lead to increases in emergency hospital visits. METHODS: A retrospective cohort was constructed from routinely collected primary and hospital care records for young people aged 12-23 years in England with (i) life-limiting conditions, (ii) diabetes or (iii) no long-term conditions. Transition point was estimated from the data and emergency inpatient admissions and Emergency Department visits per person-year compared for paediatric and adult care using random intercept Poisson regressions. RESULTS: Young people with life-limiting conditions had 29% (95% CI: 14-46%) more emergency inpatient admissions and 24% (95% CI: 12-38%) more Emergency Department visits in adult care than in paediatric care. There were no significant differences associated with the transition for young people in the diabetes or no long-term conditions groups. CONCLUSIONS: The transition from paediatric to adult healthcare is associated with an increase in emergency hospital visits for young people with life-limiting conditions, but not for young people with diabetes or no long-term conditions. There may be scope to improve the transition for young people with life-limiting conditions. IMPACT: There is evidence for increases in emergency hospital visits when young people with life-limiting conditions transition to adult healthcare. These changes are not observed for comparator groups - young people with diabetes and young people with no known long-term conditions, suggesting they are not due to other transitions happening at similar ages. Greater sensitivity to changes at transition is achieved through estimation of the transition point from the data, reducing misclassification bias.

Achieving child-centred care for children and young people with life-limiting and life-threatening conditions-a qualitative interview study.

This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5-17 years), 40 parents (of children 0-17 years), 13 siblings (5-17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing 'normality', described as children's desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality. CONCLUSION: Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this. WHAT IS KNOWN: • Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis. • Child-centred care provision must be directed by children's perspectives on their priorities for care. WHAT IS NEW: • Social and educational activities are more important to children with life-limiting conditions than their medical concerns. • A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.