What constitutes 'good quality care' from the perspectives of children and young people with life-limiting and life-threatening conditions?
Child; child; female; human; male; outpatient; preschool child; clinical article; Only Child; hospital patient; nervous system; malignant neoplasm; developmental stage; adolescent; conference abstract; semi structured interview; conversation; genetic transcription; social care
Objectives Children with life-limiting and life-threatening conditions (LLLTC) have complex needs and are high users of health and social care. Several quality standards exist that highlight the importance of addressing the needs and wishes of children and young people (CYP) with LLLTC in paediatric palliative care. However there is limited evidence about what children themselves think is important. The aim of this study is to consider what constitutes good quality care from the perspectives of CYP with LLLTC. Methods Nine UK inpatient and outpatient settings supported recruitment of CYP aged 5-17 with LLLTC to participate in qualitative semi-structured interviews. Care quality was coded within a larger framework analysis. Analysis of verbatim transcripts was supported by NVivo. Results 26 children and young people with a range of LLLTCs (10 gastrointestinal, 6 cancer, 5 neurological, 3 congenital, 1 metabolic, 1 respiratory) were interviewed. Three domains of quality care were identified: 1) good communication with the health and social care professionals that care for CYP; 2) being enabled to be a CYP during their care; and 3) how professionals can best alleviate their symptoms and concerns. Children and young people spoke about the significance of being cared for attentively, by professionals that they know and who make an effort to know them. They want symptom relief in comfortable settings tailored to their needs and interests. It was important to facilitate activities that are appropriate to their cognitive age. CYP also value being included in conversations about their care in an appropriate way. When health and social care professionals ask CYP about things that are important to them it demonstrates that they care. Conclusion Children and young people with life-limiting and life-threatening conditions have unique and important views about what they want from their care. CYP appreciate professionals making an effort to know them in a way that is appropriate to their developmental stage, and explicit opportunities to be part of communication about their care. Quality care must be informed by CYP views, including those with serious, complex illness. Our study has demonstrated that they can provide useful and specific input. Experiential data on quality of care should be collected alongside outcome data.
Braybrook D; Coombes L; Scott HM; Haroardottir D; Bristowe K; Fraser L; Harding R
Archives of Disease in Childhood
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.517" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.517</a>
My Life Is a Mess but I Cope': An Analysis of the Language Children with Life-limiting and Life Threatening Illnesses Use to Describe their Own Condition
Child; child; controlled study; female; human; male; preschool child; emotion; clinical article; interview; Only Child; human experiment; human tissue; malignant neoplasm; thematic analysis; conference abstract; health status; literature; language; ambivalence; discourse analysis
Background/aims: Children with life-limiting and life-threatening conditions are rarely involved in research. Engaging them directly enables them to express the meaning of their condition in their own words. This study aimed to explore the language children use to describe their condition and its impact on their life, to inform strategies for engaging children about their priorities. <br/>Method(s): Semi-structured, qualitative interviews with purposively sampled children with life-limiting and life-threatening conditions. Data were analysed using thematic analysis, discourse analysis and the discourse dynamics approach to identify figurative language. <br/>Result(s): Participants: 26 children (6 cancer; 20 non-cancer) aged 5-17. <br/>Finding(s): Children as young as five provided rich descriptions of their condition, including: diverse negative emotions often contextualised by what they 'can't do' ('can't do anything', 'can't go anywhere'), and comparisons to healthy ('normal', 'usual') peers, with their condition singling them out ('the one that has something,' 'the sick one'). Others expressed ambivalence ('doesn't bother me', 'not really fussed') or acceptance using idiomatic phrases ('I can live with that', 'you're still you, you haven't gone anywhere'). Metaphor were common, including familiar journey and battle metaphors, and novel usages related to zombies, gaming, superheroes, toys and animals. Children used medical jargon related to their condition, combined with preferred words for their body ('tummy', 'belly', 'butt') and had capacity to create comparatives and superlatives to describe symptom severity (no hurt, hurt a bit, a whole lot, like crazy, really hurt, worse, better). <br/>Conclusion(s): Children make deliberate language choices when describing their condition, and can express holistic needs, and changes in health status. Clinicians should observe and mirror children's language to enhance discussions about priorities.
Bristowe K; Braybrook D; Scott HM; Coombes L; Harardottir D; Roach A; Ellis-Smith C; Fraser L; Downing J; Murtagh FE; Harding R
Palliative Medicine
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</a>
Psychological well-being of hospice staff: systematic review
Hospices; Supportive care; Psychological care; Education and training; Hospice care
BACKGROUND: Poor psychological well-being among healthcare staff has implications for staff sickness and absence rates, and impacts on the quality, cost and safety of patient care. Although numerous studies have explored the well-being of hospice staff, study findings vary and the evidence has not yet been reviewed and synthesised. Using job demands-resources (JD-R) theory, this review aimed to investigate what factors are associated with the well-being of hospice staff. METHODS: We searched MEDLINE, CINAHL and PsycINFO for peer-reviewed quantitative, qualitative or mixed-methods studies focused on understanding what contributes to the well-being of hospice staff who provide care to patients (adults and children). The date of the last search was 11 March 2022. Studies were published from 2000 onwards in the English language and conducted in Organisation for Economic Co-operation and Development countries. Study quality was assessed using the Mixed Methods Appraisal Tool. Data synthesis was conducted using a result-based convergent design, which involved an iterative, thematic approach of collating data into distinct factors and mapping these to the JD-R theory. RESULTS: A total of 4016 unique records were screened by title and abstract, 115 full-text articles were retrieved and reviewed and 27 articles describing 23 studies were included in the review. The majority of the evidence came from studies of staff working with adult patients. Twenty-seven individual factors were identified in the included studies. There is a strong and moderate evidence that 21 of the 27 identified factors can influence hospice staff well-being. These 21 factors can be grouped into three categories: (1) those that are specific to the hospice environment and role, such as the complexity and diversity of the hospice role; (2) those that have been found to be associated with well-being in other similar settings, such as relationships with patients and their families; and (3) those that affect workers regardless of their role and work environment, that is, that are not unique to working in a healthcare role, such as workload and working relationships. There was strong evidence that neither staff demographic characteristics nor education level can influence well-being. DISCUSSION: The factors identified in this review highlight the importance of assessing both positive and negative domains of experience to determine coping interventions. Hospice organisations should aim to offer a wide range of interventions to ensure their staff have access to something that works for them. These should involve continuing or commencing initiatives to protect the factors that make hospices good environments in which to work, as well as recognising that hospice staff are also subject to many of the same factors that affect psychological well-being in all work environments. Only two studies included in the review were set in children's hospices, suggesting that more research is needed in these settings. PROSPERO REGISTRATION NUMBER: CRD42019136721 (Deviations from the protocol are noted in Table 8, Supplementary material).
Papworth A; Ziegler L; Beresford B; Mukherjee S; Fraser L; Fisher V; O'Neill M; Golder S; Bedendo A; Taylor J
BMJ Supportive and Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://spcare.bmj.com/content/early/2023/04/24/spcare-2022-004012">10.1136/spcare-2022-004012</a>
Understanding Parent Experiences of End-Of-Life Care for Children: A Systematic Review and Qualitative Evidence Synthesis
end-of-life care;Child; Palliative Care; Parents; qualitative research; systematic review
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.
Barrett L; Fraser L; Noyes J; Taylor J; Hackett J
Palliative Medicine
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163221144084" target="_blank" rel="noreferrer noopener">10.1177/02692163221144084</a>
The Impact of COVID-19 on Palliative Care for Children Within the UK
Child; Palliative care; United Kingdom; COVID-19; Workload; Vulnerability; Conference abstract; Controlled study; Semi-structured interview
Background/aims: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) represent a group with complex care needs that are met by multiple services and thus may be subject to particular vulnerabilities.
Scott H; Coombes L; Braybrook D; Roach A; Harardottir D; Bristowe K; Ellis-Smith C; Bluebond-Langner M; Farsides B; Murtagh F; Fraser L; Harding R
Palliative Medicine
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</a>
Adult healthcare is associated with more emergency healthcare for young people with life-limiting conditions
Adolescent; Adult; Children; Cohort analysis; Diabetes mellitus; Hospital care; Retrospective studies
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. Method(s): 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. Result(s): 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. Conclusion(s): 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. Copyright © 2022, The Author(s).
Jarvis S; Flemming K; Richardson G; Fraser L
Pediatric Research
2022
<a href="http://doi.org/10.1038/s41390-022-01975-3" target="_blank" rel="noreferrer noopener">10.1038/s41390-022-01975-3</a>
Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis
children; systematic review; life limiting conditions; paediatrics; fathers
BACKGROUND: Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the majority of this research is from mothers' perspectives, meaning that fathers' experiences are not well understood. OBJECTIVES: To identify and synthesise findings from existing qualitative studies that have explored the experiences of fathers of children with a life-limiting condition. METHODS: A systematic review of qualitative research was conducted using thematic synthesis. Searches were conducted in MEDLINE, CINAHL, EMBASE, PsycINFO and Social Science Citation Index. RESULTS: Findings from 30 studies were included, representing the experiences of 576 fathers of children with a range of diagnoses including cancer, cystic fibrosis, genetic and neurological conditions. Themes detailed fathers' experiences of uncertainty and shock around the time of their child's diagnosis, their accounts of a 'new normal', difficulties in discussing their emotions, forming relationships with and seeking support from professionals and working fathers' role conflicts. They discussed the life-changing nature of their child's diagnosis, an event that affected all aspects of their lives from everyday activities, to their relationships, spirituality, values and ambitions. CONCLUSIONS: Fathers experience many difficulties in response to their child's diagnosis and ongoing treatment. Findings highlight the need for healthcare professionals to recognise individual family dynamics and the evolving role of the father. Fathers' responses are not widely understood, and research that directly addresses their own well-being is warranted.
Fisher V; Fraser L; Taylor J
BMJ Supportive & Palliative Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjspcare-2021-003019" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003019</a>
Development of a managed clinical network for children's palliative care - a qualitative evaluation
Children’s palliative care; Managed clinical network
BACKGROUND: Consistent evidence suggests that children's palliative care is not equitable and managed clinical networks (MCNs) have been recommended as a solution. This study explored the perspectives of health professionals involved in the development of a children's palliative care MCN, with an aim to identify barriers and enablers of successful implementation. METHODS: Thematic analysis of semi-structured interviews and focus groups with 45 healthcare staff with a role in developing the MCN or in the delivery of children's palliative care (September 2019-March 2020). RESULTS: The study explored health professionals' perceptions of the MCN features that had helped to formalise governance processes, establish training and networking opportunities, standardise practice, and improve collaboration between organisations. These include the funded MCN co-ordinator, committed individuals who lead the MCN, and a governance structure that fosters collaboration. However, the MCN's development was impeded by cross-cutting barriers including limited funding for the MCN and children's palliative care more generally, no shared technology, lack of standards and evidence base for children's palliative care, and shortage of palliative care staff. These barriers impacted on the MCN's ability to improve and evaluate palliative care provision and affected member engagement. Competing organisational priorities and differences between NHS and non-NHS members also impeded progress. Training provision was well received, although barriers to access were identified. CONCLUSIONS: Key features of children's palliative care can act as barriers to developing a managed clinical network. Managing expectations and raising awareness, providing accessible and relevant training, and sharing early achievements through ongoing evaluation can help to sustain member engagement, which is crucial to a network's success.
Papworth A; Fraser L; Taylor J
BMC Palliative Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-021-00712-7" target="_blank" rel="noreferrer noopener">10.1186/s12904-021-00712-7</a>
P-75?�cold bedrooms, cooling blankets, and cuddle cots� provided by children�s hospices: mapping practice
Background The ways parents are supported at the end of their child�s life and after death can profoundly affect the grieving process. Within children�s hospices cold bedrooms, cooling blankets and cuddle cots are provided to enable families to be close and have unrestricted access to their child after death. Such facilities are thought to support parents in the initial stages of grief. However, there is wide variation in practice and almost no evidence to inform parents� decision-making during advance care planning.Aim We aim to map current practice and explore parents� experiences of using cold bedrooms and/or cooling blankets and/or cuddle cots � either in the hospice or at home � and the perceived impact of this on immediate and long term bereavement.Methods This study comprises two stages. First, a cross-sectional survey to gather data on previous and current practice, and reasons for inclusion of these facilities within the portfolio of care and support, collected via structured telephone interviews with heads of care in all UK children�s hospices (n=52). Second, qualitative interviews with parents (n=30) exploring stories of the early days of bereavement and the support received from the hospice, their needs and desires in those early days and the perceived role of these facilities on early and subsequent experiences of bereavement. Survey data will be analysed using descriptive statistics and content analysis. Interviews will be analysed using narrative and thematic approaches.Results We will not have data to report but hope presenting this work will alert others to this research and generate connections and meaningful conversations with others with an interest in this area.Conclusions Findings will have implications for practice within children�s hospices and also for statutory services which are beginning to offer this provision.
Hackett J; Beresford B; Fraser L
BMJ Supportive & Palliative Care
2018
<a href="http://doi.org/10.1136/bmjspcare-2018-hospiceabs.100" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-hospiceabs.100</a>
Prevalence of life-limiting conditions in children and young people in England: Time trends by area type
Life limiting illnesses; multiculturalism; palliative care services; population research
Palliative care services in England lack data on the number of children with 'life limiting conditions' (LLCs). Recent research determined that the prevalence of LLCs in children in England was double previous estimates. We build on this by analysing time-trends in the prevalence of LLCs by small area deprivation and geodemographic area types. Prevalence is highest for children aged less than one year but time trends show no increase for the youngest age group but significant increases for older children. These increases are mirrored by a decrease in all cause mortality for children suggesting improved survival. Rates are highest in more deprived areas and those typified by multicultural populations. Increasing prevalence and number of cases over time may require increased paediatric palliative care service provision in the future. © 2014 Elsevier Ltd.
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Norman P; Fraser L
Health and Place
2014
<a href="http://doi.org/10.1016/j.healthplace.2014.01.002" target="_blank" rel="noreferrer noopener">10.1016/j.healthplace.2014.01.002</a>