Conflicting realities experienced by children with life-limiting and life-threatening conditions when transitioning to adult health services
social support; qualitative analysis; palliative therapy; major clinical study; sibling; non profit organization; skill; joint; human; article; child; female; male; controlled study; adult; interview; total quality management; transition to adult care; learning; social media; adult child; secondary analysis; dilution; facilitation; social isolation
AIMS: The aim of this study was to report a secondary qualitative analysis exploring the cultural and practical differences that young people and parents experience when transitioning from children's to adult services. BACKGROUND: Despite two decades of research and quality improvement initiatives, young people with life-limiting and life-threatening conditions still find transition unsatisfactory. DESIGN: Secondary analysis: 77 qualitative interviews with children and young people (20), parents (35), siblings (1), professionals (21).
Noyes J; Pritchard S; Pritchard A; Bennett V; Rees S
Journal of advanced nursing
2018
<a href="http://doi.org/10.1111/jan.13811" target="_blank" rel="noreferrer noopener">10.1111/jan.13811</a>
Influencing the national debate on medical assistance in dying (MAID): Leveraging the canadian paediatric surveillance system (CPSP) to inform the position of the canadian paediatric society (CPS)
medical care; adult; Canada; Canadian; child; complication; conference abstract; conversation; death; disability; female; human; joint; law; major clinical study; male; morbidity; palliative therapy; pediatrician; public figure; public health; rare disease; young adult
Aims In June 2016, Bill C-14 was enacted in the Canadian Parliament, allowing medical assistance in dying (MAID) for consenting adults with 'grievous and irremediable medical conditions' experiencing 'intolerable' suffering whose deaths are 'reasonably foreseeable'. Minor patients (both mature and 'never competent' minors) are currently excluded from the legislation. An independent review of the issue of minor patients and MAID was requested by Parliament. As health professionals, politicians and the public grappled with this issue, never before formally contemplated in Canada, the Canadian Paediatric Surveillance Program (CPSP) sough to provide data on exploratory conversations and explicit requests for MAID from/for minor patients to inform the independent review. Methods The CPSP is a joint program of the Public Health Agency of Canada and the Canadian Paediatric Society. The program conducts national surveillance into diseases that are high in disability, morbidity and economic costs to society, despite their low frequency. The CPSP surveys over 2500 paediatricians and paediatric subspecialists each month to monitor rare diseases, conditions and complications in Canadian children. A one-time survey was sent to all CPSP participants in May 2016. The survey tool can be accessed at www.cpsp.cps.ca/surveillance. Results The survey response rate was 40%. Over one-third of participants reported they provide end-of-life or palliative care (370; 35%). Exploratory discussions with minor patients about MAID were reported by 35 participants, representing 60 patients, the majority of whom were 14-18 years of age. Nine (9) partici-pants recalled an explicit request for MAID, representing 17 minors. Exploratory discussions with patients about MAID, on behalf of minor patients, were reported by 118 participants, representing 419 minor patients, the majority of whom were under 1 year of age. Forty-five (45) participants recalled an explicit request for MAID, representing 91 parents, the majority of whom had children under 1 year. Conclusion CPSP participants from across Canada reported exploratory conversations about and explicit requests for MAID from both minors and parents. Discussion with and explicit requests from parents outnumber those by minors by more than five to one. This study represents an important and innovative use of a paediatric surveillance system to inform a national conversation on a complex emerging ethical issue.
Moore-Hepburn C
Archives of Disease in Childhood
2018
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-2018-rcpch.488" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-rcpch.488</a>
Prevalence and management of dystonia in a paediatric palliative care cohort
dystonia; palliative therapy; prevalence; 302-17-0 (chloral hydrate); 4205-90-7 (clonidine); 4205-91-8 (clonidine); 57066-25-8 (clonidine); benzodiazepine derivative; Child; chloral hydrate; Clinical Article; clonidine; cohort analysis; cross-sectional study; Diagnosis; documentation; England; Female; Human; joint; Male; neurology; precancer; preschool child; seizure
Objectives: Dystonia and seizures can be common, unpredictable and distressing neurological symptoms in paediatric palliative care. Emergency seizure management is increasingly under joint neurology and palliative care, often incorporated into "passport type" individual plans, as advocated by the Royal College of Paediatrics and Child Health. This is rarer in dystonia. We evaluated the comparative frequency of dystonia and seizures in a cohort of children receiving paediatric palliative care and examined how emergency plans differ between neurology, palliative care and in collaboration. Methods: We performed a cross-sectional analysis of the palliative care database at Evelina London Children's Hospital, a non-malignant caseload covering southeast England. Documentation over 12 months (preceding July 2017) was reviewed to assess the frequency of patients with dystonia and seizures, current relevant therapies and proposed emergency management. Results: In a cohort of 109 children with a complex range of diagnoses (mean age = 6.0 years), 37% (n=40) suffered from seizures, 27% (n=29) from dystonia and 43% (n=47) from both. Emergency dystonia plans were identified in 51.7% (15/29) of patients: 7 by palliative care and 8 by neurology. No collaborative plans were found. Emergency seizure plans were identified in 80% (32/40) of patients: 11 by palliative care, 9 by neurology and 12 in collaboration. Conclusions: Dystonia is almost as common as seizures in children with non-malignant conditions receiving palliative care. Individualised seizures plans were commonly documented, but less for prolonged dystonic episodes. Dystonia management was more often led by neurology, in contrast to clear evidence of joint working in patients with seizures. Medications differed for dystonia: palliative care promoted conservative measures and benzodiazepines, whereas clonidine hydrochloride and chloral hydrate were favoured by neurology. Paediatric palliative care is playing an increasing role in life-limiting and life-threatening neurological conditions. However, increased collaborative working is essential to ensure consistent patient-focussed management.
2017
Slater T; Laddie J; Hughes G; Lumsden DE
Developmental Medicine And Child Neurology
2017
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/10.1111/dmcn.13622" target="_blank" rel="noreferrer">10.1111/dmcn.13622</a>