GPs' role in caring for children and young people with life-limiting conditions: a retrospective cohort study
accident; adult; article; attention; care behavior; child; clinical article; clinical practice; cohort analysis; consultation; England; female; general practice; health care utilization; hospital patient; human; Icd-10; male; patient care; primary health care; Read code; retrospective study; secondary health care
Background GPs are rarely actively involved in healthcare provision for children and young people (CYP) with life-limiting conditions (LLCs). This raises problems when these children develop minor illness or require management of other chronic diseases. Aim To investigate the association between GP attendance patterns and hospital urgent and emergency care use. Design and setting Retrospective cohort study using a primary care data source (Clinical Practice Research Datalink) in England. The cohort numbered 19 888. Method CYP aged 0–25 years with an LLC were identified using Read codes (primary care) or International Classification of Diseases 10 th Revision (ICD-10) codes (secondary care). Emergency inpatient admissions and accident and emergency (A&E) attendances were separately analysed using multivariable, two-level random intercept negative binomial models with key variables of consistency and regularity of GP attendances. Results Face-to-face GP surgery consultations reduced, from a mean of 7.12 per person year in 2000 to 4.43 in 2015. Those consulting the GP less regularly had 15% (95% confidence interval [CI] = 10% to 20%) more emergency admissions and 5% more A&E visits (95% CI = 1% to 10%) than those with more regular consultations. CYP who had greater consistency of GP seen had 10% (95% CI = 6% to 14%) fewer A&E attendances but no significant difference in emergency inpatient admissions than those with lower consistency. Conclusion There is an association between GP attendance patterns and use of urgent secondary care for CYP with LLCs, with less regular GP attendance associated with higher urgent secondary healthcare use. This is an important area for further investigation and warrants the attention of policymakers and GPs, as the number of CYP with LLCs living in the community rises.
Jarvis S; Parslow R C; Hewitt C; Mitchell S; Fraser L K
The British journal of general practice : the journal of the Royal College of General Practitioners.
2020
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/10.3399/bjgp20X708233" target="_blank" rel="noreferrer noopener">10.3399/bjgp20X708233</a>
Achieving beneficial outcomes for children with life-limiting and life-threatening conditions receiving palliative care and their families: A realist review
child; healthcare facilities; manpower and services; palliative care; realist review; terminal care
Background:Palliative care for children and young people is a growing global health concern with significant resource implications. Improved understanding of how palliative care provides benefits is necessary as the number of children with life-limiting and life-threatening conditions rises.Aim:The aim is to investigate beneficial outcomes in palliative care from the perspective of children and families and the contexts and hidden mechanisms through which these outcomes can be achieved.Design:This is a systematic realist review following the RAMESES standards. A protocol has been published in PROSPERO (registration no: CRD42018090646).Data sources:An iterative literature search was conducted over 2?years (2015?2017). Empirical research and systematic reviews about the experiences of children and families in relation to palliative care were included.Results:Sixty papers were included. Narrative synthesis and realist analysis led to the proposal of context?mechanism?outcome configurations in four conceptual areas: (1) family adaptation, (2) the child?s situation, (3) relationships with healthcare professionals and (4) access to palliative care services. The presence of two interdependent contexts, the ?expert? child and family and established relationships with healthcare professionals, triggers mechanisms, including advocacy and affirmation in decision-making, which lead to important outcomes including an ability to place the emphasis of care on lessening suffering. Important child and family outcomes underpin the delivery of palliative care.Conclusion:Palliative care is a complex, multifactorial intervention. This review provides in-depth understanding into important contexts in which child and family outcomes can be achieved so that they benefit from palliative care and should inform future service development and practice.
Mitchell S; Bennett K; Morris A; Slowther A; Coad J; Dale J
Palliative Medicine
2019
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/10.1177/0269216319870647" target="_blank" rel="noreferrer noopener">10.1177/0269216319870647</a>
Parental experiences of end of life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: A qualitative interview study
death; article; child; female; human; male; palliative therapy; genetic transcription; thematic analysis; pediatrics; clinical article; palliative care; pediatric intensive care unit; advance care planning; decision making; interview; human tissue; national health service; nonverbal communication; paediatric palliative care
Objectives To provide an in-depth insight into the experience and perceptions of bereaved parents who have experienced end of life care decision-making for children with life-limiting or life-threatening conditions in the paediatric intensive care unit (PICU). Design An in-depth qualitative interview study with a sample of parents of children with life-limiting or life-threatening conditions who had died in PICU within the previous 12 months. A thematic analysis was conducted on the interview transcripts. Setting A PICU in a large National Health Service (NHS) tertiary children's hospital in the West Midlands, UK. Participants 17 parents of 11 children who had died in the PICU. Results Five interconnected themes were identified related to end of life care decision-making:(1) parents have significant knowledge and experiences that influence the decision-making process.(2) Trusted relationships with healthcare professionals are key to supporting parents making end of life decisions.(3) Verbal and non-verbal communication with healthcare professionals impacts on the family experience.(4) Engaging with end of life care decision-making can be emotionally overwhelming, but becomes possible if parents reach a place of acceptance'.(5) Families perceive benefits to receiving end of life care for their child in a PICU. Conclusions and implications The death of a child is an intensely emotional experience for all involved. This study adds to the limited evidence base related to parental experiences of end of life care decision-making and provides findings that have international relevance, particularly related to place of care and introduction of end of life care discussions. The expertise and previous experience of parents is highly relevant and should be acknowledged. End of life care decision-making is a complex and nuanced process; the information needs and preferences of each family are individual and need to be understood by the professionals involved in their care. Copyright © 2019 Author(s).
Mitchell S; Spry J L; Hill E; Coad J; Dale J; Plunkett A
BMJ Open
2019
<a href="http://doi.org/10.1136/bmjopen-2018-028548" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2018-028548</a>