The Physical Health of Caregivers of Children With Life-Limiting Conditions: A Systematic Review
caregiver; children; life-limiting condition; parents; physical health
CONTEXT: Parental caregiving for a child with a life-limiting condition (LLC) is complex physical and mental work. The impact of this caregiving on parents' physical health is unknown. OBJECTIVES: (1) To review existing evidence on the physical health of parents caring for a child with a LLC and (2) to determine how physical health of parents is measured. DATA SOURCES: Medline, Embase, PsycINFO, and Cumulative Index of Nursing and Allied Health Literature were searched. STUDY SELECTION: Peer-reviewed articles were included if they reported primary data on the physical health of a caregiver of a child with a LLC. Studies were excluded if they described only the caregiver's mental health or if the caregivers were bereaved at the time of data collection. DATA EXTRACTION: Of 69 335 unique citations, 81 studies were included in the review. RESULTS: Caregiver health was negatively impacted in 84% of studies. Pain and sleep disturbance were the most common problems. Ways of measuring the physical health of caregiver varied widely. We found an absence of in-depth explorations of the social and economic contexts, which could potentially mitigate the impact of caregiving. Furthermore, we find health interventions tailored to this group remain largely unexplored. LIMITATIONS: Studies were heterogenous in methodology, making comparisons of results across studies difficult. CONCLUSIONS: These findings support the need for improving access to interventions aimed at improving physical health in this population. The rate of health-seeking behaviors, preventive health care access and screening for health conditions is understudied and represent important directions for further research.
Hartley J; Bluebond-Langner M; Candy B; Downie J; Henderson EM
Pediatrics
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/10.1542/peds.2020-014423" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-014423</a>
Long-Term Daily Administration of Aprepitant for the Management of Intractable Nausea and Vomiting in Children With Life-Limiting Conditions: A Case Series
aprepitant; life-limiting; nausea; palliative; pediatric; vomiting
Background: Nausea and vomiting is a common symptom in children through their end of life journey. Aprepitant, a NK-1 antagonist, has become a potent weapon in the fight against chemo-induced nausea and vomiting. However, its use in palliative care for refractory nausea and vomiting has been limited due to limited experience or evidence of continuous use. Emerging evidence suggests that continuous use is not only safe, but also effective in patients with nausea and vomiting refractory to multiple lines of antiemetic therapy. Method(s): We conducted a single centre retrospective chart review of children receiving care from a specialist palliative care team who were given continuous daily aprepitant for nausea and vomiting and were unresponsive to at least two prior lines of antiemetic therapy. Parental reports of the impact of nausea on mobility and feeding were used as proxy efficacy markers. Duration of effect and toxicity was also evaluated. Result(s): Ten children (eight with cancer as a primary diagnosis and two with noncancer diagnoses) received continuous aprepitant and all showed resolution of nausea and vomiting and an increased ability to mobilize and tolerate feeds. No adverse events noted. Conclusion(s): Our review suggests a role for aprepitant in management of refractory nausea and vomiting, demonstrating safety and efficacy. This case series is the first report of aprepitant use in this manner in the paediatric palliative care setting. Copyright © 2021 The Authors
Patel B; Downie J; Bayliss J; Stephenson A; Bluebond-Langner M
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2021.02.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.02.007</a>
Evaluating Palliative Care Training Experiences Of Paediatric Trainees Across Scotland
Palliative Therapy; Scotland; Student; Analgesia; Child; Consensus Development; Exposure; Family Study; Female; Grief; Human; Human Experiment; Male; Nausea And Vomiting; Recipient; Simulation Training; Sudden Infant Death Syndrome; Symptom; Teaching
Aim To determine the experience of training in paediatric palliative medicine (PPM) among trainees, to identify how well trainees were able to meet RCPCH competences in PPM, and to explore educational opportunities desired by trainees to enhance current PPM training. Methods A semi-structured survey, containing 22 questions, was sent by email to all 4 Paediatric Training programme directors in Scotland (North, East, South East and West) for onward distribution to paediatric trainees (ST1-ST8) between October 2015 and October 2016. Questions explored PPM teaching experience, trainees confidence in achieving RCPCH palliative care competences, and identification additional training desired. Results 60 (54%) recipients responded; 27 (45%) level one; 13 (22%) level two, and 20 (33%) level three. 50 (81%) respondents had undertaken all their paediatric training in Scotland. The majority of trainees had limited exposure to dedicated PPM training: 26 (42%) stated they had no training and 25 (40%) had completed 1-2 teaching sessions in PPM. Grading their ability to meetthe RCPCH palliative care competences 35 (63%) felt confident in the recognition of loss and grief and their effects 42 (70%) in understanding the need to respect the wishes of the child and family, but only 30 (50%) in their knowledge of the guidelines on withholding and withdrawing treatment and the local and national guidance on sudden infant death (SUDE). Regarding symptom management and recognition of the palliative phase of a patient journey, respondents were neutral or in disagreement that they had gained sufficient experience to be clinical competent in these fields (70% and 58% respectively). Trainees identified numerous areas in which they desired additional training: 85% on guidance around withholding and withdrawing treatment; 68% on anticipatory care planning; 67% on pain management and 55% on management of nausea and vomiting. Trainees responded positively when asked if simulation training would enhance PPM training, particularly around breaking bad news (86%), and anticipatory care planning and limitations of treatment (81%). Conclusion Paediatric trainees have limited exposure to designated PPM training in Scotland and identified that this lack of training opportunities negatively impacts on their clinical knowledge and competence. Training and education is strongly desired in a number of areas with simulation being identified as a useful method of delivering training when there is inadequate clinical exposure to PPM.
Downie J; Bland R M
Archives Of Disease In Childhood
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).
10.1136/archdischild-2017-313087.504
Evaluation Of The Need For A Paediatric Palliative Care Service In The West Of Scotland
Palliative Care; Paediatric Staffing; Health Service; Paediatric Practice
Abstract
Aims To assess how many children access palliative care services across NHS Greater Glasgow, their specific needs, if these are addressed by current services, and whether a dedicated palliative care service is required.
Methods A semi-structured survey, containing 22 questions, was sent by email, to all paediatric consultants, associate specialists and speciality doctors in NHS Greater Glasgow between October 2014–April 2015 (107 recipients). Data were analysed using a mixed methods approach; thematic analysis was performed on free text responses.
Results 76 recipients responded to the survey of whom 95% were consultants, and 83% worked in a tertiary children’s hospital. 54% stated that palliative care comprised < 5% of their workload; compared to 8% stated it was >50%. 69% felt they lacked time, and 67% the resources, to sufficiently address their patients’ palliative needs. The most common palliative needs of patients were identified as immediate end of life care (91%), family support (84%), nutritional support (81%), and social /emotional (83%) support care needs, whilst spiritual needs (49%) were less commonly identified. Dominant themes emerging as barriers to palliative care provision included: failure of identification of a child’s palliative care needs by their primary speciality, lack of current services particularly in relation to community nursing support, difficulties accessing current palliative care services (including how to refer patients and what services are available), and no identified lead clinician for palliative care. 55% of respondents commented on positive interactions with the local children’s hospice, including support for end of life care and sibling support; and the role of specialist nurses and the family support service. 88% of participants expressed a desire for a dedicated children’s palliative care service. Participants were asked to comment on the services they would expect. Eight themes were identified including, the need for on-call clinical support, coordination of services, and improvement of bereavement services.
Conclusions Paediatricians from a range of specialties lack the time and resources to provide the specialist palliative care children need. There is a significant need in Greater Glasgow for the development of a dedicated paediatric palliative care service.
Downie J; A McGettrick; RM Bland; C Kidson
Archives Of Disease In Childhood
2016
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).
http://dx.doi.org/10.1136/archdischild-2016-310863.471
Advanced Planning In Perinatal Palliative Care – Are We Making Clear End Of Life Plans?
Abstract
Aim With continuing advancements in both antenatal and neonatal care, perinatal palliative continues to pose significant challenge. A number of professional bodies have published best practice guidance on the delivery of palliative care in the postnatal period, including BAPM (2010) and Managed Clinical Networks. An important consideration which is highlighted in all guidance is the use of end of life care plans. These are plans which combine clinical care plans with parental wishes and multidisciplinary team assessment. The aim of this audit was to assess the frequency of use of end-of-life care plans across central Scotland.
Methods A retrospective case note review of all neonatal deaths occurring after 23 weeks gestation in two large tertiary neonatal units in Scotland. A record of neonatal deaths within each unit was obtained from the electronic patient record ‘Badger’ database, between January 2014 and December 2014. A review of both the units admission databases and death certification logs were also undertaken to ensure that all deaths were captured. Full notes were requested from medical records and reviewed by the authors. All neonatal deaths following planned reorientation of care were included, acute deaths in the delivery room or neonatal unit were excluded due to their often sudden and unpredictable nature. The authors reviewed full case notes for completed or partially completed end-of-life care planning.
Results A total of 47 deaths occurred over 2014 between both units. 60% of deaths followed planned reorientation of care. Parents were often involved in discussions regarding plans to reorientate care and parental wishes, both before and after death, were documented in 68% of case notes. The most common plans documented related to planned extubation (94%), however planning regarding analgesia (23%), feeding (4%) and bereavement care (28%) was limited.
Conclusions At present, a large proportion of infants approaching end of life do not have a clear care plan documented. This study has identified that there remains a need for clear and concise documentation of clinical and parental wishes following reorientation of care.
Downie J; A Khader; M Campbell; Murdoch E
Archives Of Disease In Childhood
2016
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).
http://dx.doi.org/10.1136/archdischild-2016-310863.500