Achieving Child-Centred Care for Children and Young People with Life-Limiting and Life-Threatening Conditions-A Qualitative Interview Study
Family/Psychology; Parents/Psychology; Adolescent; Child; Child Care; Children; End of Life Care; Humans; Normality; Paediatrics; Palliative Care; Qualitative Research; Social Support; Symptom Assessment
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.
Coombes L; Braybrook D; Roach A; Scott H; Harðardóttir D; Bristowe K; Ellis-Smith C; Bluebond-Langner M; Fraser LK; Downing J; Farsides B; Murtagh FEM; Harding R
European Journal of Pediatrics
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/10.1007/s00431-022-04566-w" target="_blank" rel="noreferrer noopener">10.1007/s00431-022-04566-w</a>
Relationships and Resources Supporting Children With Serious Illness and Their Parents
Adolescent; Child; Chronic Disease; Health Personnel; Humans; Palliative Care; Parents; Quality of Life; Young Adult
OBJECTIVE: Children with complex chronic conditions (CCCs) and their parents benefit from supportive serious illness care when their conditions are severe and impact their quality of life and stress. This includes not only expert medical care but also effective relationships with the clinical team. Existing data suggest that there are opportunities for improvement. This study's aim was to explore important aspects of the relationships and resources that facilitate supportive serious illness care among children with CCCs and their parents. METHODS: We conducted semistructured interviews with adolescents and young adults (AYAs) with CCCs (aged 13-35 years), and parents of children with CCCs across 2 academic pediatric centers in the United States from December 2018 to April 2019. Transcripts were iteratively coded and analyzed by a team that included a sociologist, pediatric intensivist, and palliative care researcher by using inductive and deductive thematic analysis. RESULTS: Seven AYAs with CCCs and 9 parents participated (16 total; 1 AYA-parent dyad). Two key categories were identified around relationships with the clinical team: trust and fostering collaboration. Three key categories related to resources are information needs, making sense of life with illness, and supportive community. Many of the key categories and themes identified by participants had both tangible and intangible components and revealed the distinct yet interconnected nature of these aspects of care. CONCLUSIONS: Awareness and cultivation of relationship and resource support through innovative interventions and attention to those with increased needs in these areas may improve the serious illness care provided to children with CCCs and their parents.
Bogetz JF; Revette A; Partin L; DeCourcey DD
Hospital Pediatrics
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/10.1542/hpeds.2022-006596" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2022-006596</a>
Palliative Care Services for Children with Life-Limiting Conditions
Palliative Therapy; Ireland; Adolescent; Article; Child; Cohort Analysis; Community Support; Controlled Study; Hospice; Human; Major Clinical Study; Male; Nurse; Patient Referral; Place of Death; Residential Care; Retrospective Study; Social Welfare; Terminal Care
Background: Palliative care (PC) for children with life-limiting conditions (LLC) is a holistic approach to achieve the best quality of life. Aim(s): Highlighting collaboration between pediatric and PC services is essential in providing seamless care. Method(s): Retrospective data obtained including patient cohort, disease profile, place of death, and the resource requirements for children with a LLC in the Mid-West region of Ireland over a 7-year period. Result(s): Seventy-seven patients were identified (n = 77); five still receiving care, four discharged, and 68 have died. The cohort ranged in age from 1 day to 17 years with a mean of approximately 6 years. Thirty-five percent of patients were less than 1 year old. Fifty-one percent were male. Seventy-one percent were referred initially to PC for end-of-life care and 29% for symptom management. Forty-four percent had home support services in place prior to referral to PC. An advanced care plan was created for 65%. Of those that died (n = 68), 70.5% died at home, 25% in hospital, and 4.4% in residential care or a children's hospice. The clinical nurse coordinator for children with life-limiting conditions (CNCCLLC) was involved with 88% of patients. The specialist PC teams were involved with 87%; 65 patients had community support, 31 patients had in-hospital support, and 29 patients were seen by both hospital and community services. Conclusion(s): Our study highlights the growing number of LLCs and current pediatric and PC services require further resources and development.Copyright © 2022, The Author(s), under exclusive licence to Royal Academy of Medicine in Ireland.
Hayden J; Larkin MA; Noonan H; Conroy M; Twomey F; O'Reilly V; Gallagher S
Irish Journal of Medical Science
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/10.1007/s11845-022-03134-3" target="_blank" rel="noreferrer noopener">10.1007/s11845-022-03134-3</a>
Measuring Quality of Dying, Death and End-Of-Life Care for Children and Young People: A Scoping Review of Available Tools
Hospice Care; Terminal Care; Adolescent; Child; Humans; Palliative Care; Quality of Life; Reproducibility of Results; Adolescent; Palliative Care; Quality of Death; Quality of Dying; Review; Terminal Care; Tools
BACKGROUND: The circumstances and care provided at the end of a child's life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to ensure high quality of care is provided. AIM: To identify available tools which measure the quality of dying, death and end-of-life care for children and young people; describe the content, and data on validity and reliability of existing tools. DESIGN: Scoping review was conducted following the Arksey and O'Malley methodological framework. DATA SOURCES: Four electronic databases (MEDLINE, EMBASE, CINAHL and PsycINFO) and grey literature were searched for studies published in English (January 2000-June 2021). A review of reference lists and citation searching was also undertaken. Tools needed to include a focus on the 'dying' phase of illness (defined as the last month of life). RESULTS: From 2078 articles, a total of 18 studies, reporting on 11 tools were identified. All tools were completed by primary caregivers or healthcare professionals as 'proxy' assessments; all except one was undertaken after death. Question items about quality of life and preparation for death were found in all tools; items relating to cultural aspects of care, grief and financial costs were less common. Only 6/11 had undergone psychometric testing within a paediatric palliative care setting. CONCLUSIONS: Future research should include ways to adapt, refine and improve existing tools. Assessing their wider application in different clinical and cultural settings and conducting further psychometric assessment represent areas of focus.
Mayland CR; Sunderland KA; Cooper M; Taylor P; Powell PA; Zeigler L; Cox V; Gilman C; Turner N; Flemming K; Fraser LK
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/10.1177/02692163221105599" target="_blank" rel="noreferrer noopener">10.1177/02692163221105599</a>