"What about me?": lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition
Humans; Parents; Child; child; Male; Attention; Emotions; sibling; life-threatening condition; Adaptation Psychological; life-limiting condition; paediatric palliative care; lived experience; Siblings; Hermeneutics
BACKGROUND: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings themselves. METHOD: This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3-29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen's lifeexistentials. RESULTS: One overall theme, "What about me?", illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one's own. CONCLUSION: The study revealed that siblings' own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings' needs.
Kittelsen TB; Castor C; Lee A; Kvarme LG; Winger A
International Journal of Qualitative Studies on Health and Well-being
2024
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/10.1080/17482631.2024.2321645" target="_blank" rel="noreferrer noopener">10.1080/17482631.2024.2321645</a>
Fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options: A qualitative systematic review
Child; child; palliative care; male; life-limiting conditions; Only Child; qualitative research; parents; paediatric palliative care; hospice and palliative nursing; fathers; family-centred care
AIM: To systematically review and synthesize findings across qualitative primary studies about fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options (C3 conditions). DESIGN: Systematic review and metasynthesis. METHODS: Sandelowski and Barosso's qualitative research methodology guided this review and metasynthesis. A modification of Ricoeur's interpretation theory, described by Lindseth and Norberg, guided the synthesis of qualitative data. The quality of the studies was evaluated using the Joanna Briggs Institute Checklist for Qualitative Research. DATA SOURCES: A systematic literature search was conducted on 6 May 2022 and updated on 19 July 2023 on MEDLINE, CINAHL Plus with Full Text, APA PsycInfo and Scopus. Inclusion criteria were English-written qualitative studies from the year 2000, from which we could extract data on fathers' experiences of living with a child from 0 to 18 years with a progressive life-limiting condition without curative treatment options. RESULTS: Seven reports from Western countries contributed to the review. Through structural analysis, we developed the following themes: 'Being shattered in the perception of fatherhood', 'Establishing a new normal' and 'Striving to be acknowledged as a part of the caring team'. CONCLUSION: Fathers had to establish a new normal, and they experienced anticipatory mourning, role conflicts and feeling sidelined in healthcare settings when living with a child with a C3 condition. An important issue for further research on paediatric palliative care (PPC) should be to include fathers in the research sample and report separately on fathers' or mothers' experiences instead of parents' experiences. IMPACT: The findings will be of interest to healthcare personnel and multidisciplinary teams working within PPC, as they give insight into fathers' experiences and suggest interventions to increase healthcare personnel's involvement with fathers, such as telemedicine. REPORTING METHOD: Following EQUATOR guidelines, the study was reported according to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) framework. PATIENT OR PUBLIC CONTRIBUTION: No patient or Public Contribution.
Sjuls M; Ludvigsen MS; Robstad N; Fegran L
Journal of Advanced Nursing
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/10.1111/jan.15884" target="_blank" rel="noreferrer noopener">10.1111/jan.15884</a>
The Quality of Life of Children Facing Life-Limiting Conditions and That of Their Parents in Belgium: A Cross-Sectional Study
Belgium; Quality of Life; outcomes; quality of life; Cross-Sectional Studies; life-limiting conditions; parents; paediatric palliative care; Cesarean Section; children’s palliative outcome scale (CPOS-2); patient-centred outcome measures
BACKGROUND: Paediatric palliative care (PPC) aims to improve children's quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of care for children with life-limiting or life-threatening conditions (LLC/LTC). This study aims to measure the quality of life (QoL) of children with LLC/LTC followed-up by PLTs and the QoL of their parents. METHODS: During interviews, an original socio demographic questionnaire, the Children palliative outcome scale-version 2 (CPOS-2), the Fragebogen für Kinder und Jugendliche zur Erfassung der gesundheitsbezogenen Lebensqualität (KINDL) and the Quality of life in life-threatening Illness-Family caregiver (QOLLTI-F) were filled in by PLT members. Statistics were used to investigate significant differences between scores. Results were discussed and interpreted with six PLTs. RESULTS: 73 children aged 1-18 were included in the study. Especially for items focusing on emotional items, children reported their QoL as higher than their parents did. The QoL scores were not significantly associated with the child's condition's severity. CONCLUSIONS: This study provides, for the first time, an overview of the QoL of children and parents followed-up by PLTs in Belgium.
Friedel M; Aujoulat I; Brichard B; Fonteyne C; Renard M; Degryse JM
Children
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/10.3390/children10071167" target="_blank" rel="noreferrer noopener">10.3390/children10071167</a>
The Needs of Children Receiving End of Life Care and the Impact of a Paediatric Palliative Care Team: A Retrospective Cohort Study
Male; Female; Humans; Adolescent; Child; Child Preschool; Infant; Length of Stay; Retrospective Studies; Palliative Care; Terminal Care; Chronic Disease; Cohort Studies; Tertiary Care Centers; Paediatric palliative care; End of life; Palliative Care/methods; Health resources; Complex chronic conditions; Terminal Care/methods
Nogueira A; Correia D; Loureiro M; Gomes B; Cancelinha C
European Journal of Pediatrics
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/10.1007/s00431-022-04683-6" target="_blank" rel="noreferrer noopener">10.1007/s00431-022-04683-6</a>
MyPal-Child Study Protocol: An Observational Prospective Clinical Feasibility Study of the MyPal ePRO-Based Early Palliative Care Digital System in Paediatric Oncology Patients
paediatric oncology; paediatric palliative care; health informatics
INTRODUCTION: Electronic patient-reported outcomes (ePROs) have tremendous potential to optimise palliative and supportive care for children with cancer, their families and healthcare providers. Particularly, these children and their families are subjected to multiple strains caused by the disease and its treatment. The MyPal digital health platform is designed to address these complex demands by offering pursuant ePRO-based functionalities via two mobile applications, one developed for children and the other for their parents. METHODS AND ANALYSIS: In this observational prospective feasibility study, 100 paediatric oncology patients aged between 6 and 17 years and at least one of their parents/legal guardians will be recruited at three clinical sites in two European countries (Germany and Czech Republic). They will use the mobile applications which are part of the novel digital health platform. During a 6-month study period, participants will complete various ePROs via the applications addressing quality of life, satisfaction with care and impact of the disease on the family at monthly intervals. Additionally, priority-based symptom reporting is integrated into a serious game for children. Outcomes that will be assessed concern the feasibility and the evaluation of the newly designed digital health platform to contribute to the evidence base of clinical ePRO use in paediatric oncology and palliative care process. ETHICS AND DISSEMINATION: The MyPal-Child study obtained ethical approval from the Ethics Committee responsible for the University of Saarland, that is, the Ärztekammer des Saarlandes, the Ethics Committee of the Medical School Hannover and the Ethics Committee of the University of Brno. Study results will be disseminated through scientific publications, presentations at international conferences, congresses and a final report to the European Commission. General publicly accessible information can be found on the project website (www.mypal-project.eu) and social media. TRIAL REGISTRATION NUMBERS: U1111-1251-0043, DRKS00021458, NCT04381221.
Meyerheim M; Karamanidou C; Payne S; Garani-Papadatos T; Sander A; Downing J; Stamatopoulos K; Ling J; Payne C; Scarfò L; Lokaj P; Maramis C; Graf N
BMJ Open
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/bmjopen-2020-045226" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2020-045226</a>
Advance Care Planning For Adolescents with Cancer and Their Parents: Study Protocol of the Boost Pacp Multi-Centre Randomised Controlled Trial and Process Evaluation
Child; Adolescent; Humans; Terminal Care; Surveys and Questionnaires; Parents; Communication; Advance Care Planning; Randomized Controlled Trials as Topic; Multicenter Studies as Topic; Advance care planning; Neoplasms/therapy; Adolescent; Multi-Centre randomised controlled trial; Paediatric oncology; Paediatric palliative care; Parent-adolescent communication
BACKGROUND: Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and preferences for treatment, there is a lack of structured multicomponent interventions to improve parent-adolescent communication on different ACP themes including those not limited to end-of-life care. The aim of this study is to evaluate the effectiveness and implementation, context and mechanisms of impact of a novel ACP program in paediatric oncology. METHODS: We will conduct a multi-centre parallel-group randomised controlled superiority trial with embedded mixed-methods process evaluation in Flanders, Belgium. Adolescents aged 10-18 who have cancer, and their parent(s) will be recruited via all four university hospitals in Flanders, Belgium, and support groups. Families will be randomised to receive care as usual or the multicomponent BOOST pACP program, consisting of three conversation sessions between an external facilitator and the adolescent and parent(s). The primary endpoint is improved parent-adolescent communication from the perspective of the adolescent. Secondary endpoints are adolescents' and parents' attitudes, self-efficacy, intention and behaviour regarding talking about ACP themes with each other, parents' perspective of shared decision making in the last clinical encounter, and the paediatric oncologist's intention and behaviour regarding talking about ACP themes with the family. Measurements will be performed at baseline, at 3 months and at 7 months using structured self-reported questionnaires. We will perform a process evaluation in the intervention group, with measurement throughout and post-intervention, using structured diaries filled out by the facilitators, interviews with facilitators, interviews with involved paediatric oncology teams, and audio-recordings of the BOOST pACP conversations. DISCUSSION: The BOOST pACP program has been developed to stimulate conversations on ACP themes between parent(s) and the adolescents, simultaneously lowering the threshold to discuss similar themes with healthcare professionals, initiating a process of normalization and integration of ACP in standard care. This combined outcome and process evaluation aims to contribute to building the necessary evidence to improve ACP in paediatric oncology. TRIAL REGISTRATION: The study is registered at ISRCTN, ISRCTN33228289 . Registration date: January 22, 2021.
van Driessche A; De Vleminck A; Gilissen J; Kars MC; van der Werff TBJ; Deliens L; Cohen J; Beernaert K
BMC 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/10.1186/s12887-021-02841-7" target="_blank" rel="noreferrer noopener">10.1186/s12887-021-02841-7</a>
The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents: development, acceptability and feasibility
BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance Care Planning) - an intervention to improve ACP in adolescents with cancer, their parents and paediatric oncologists. METHODS: Several methods informed the intervention development process: 1) Problem identification: interviews with 11 healthcare professionals working in paediatric oncology; 2) Identification of evidence: literature review of existing pACP tools and barriers and facilitators in performing pACP; 3) Logic model and 4) Intervention design: collaborative expert meetings with researchers and professionals in pACP; 5a) Acceptability test of the materials: interviews with nine healthcare professionals, four adolescents and young adults with cancer and six parents; 5b) Feasibility test of core intervention components with three families, including interviews about their experiences. RESULTS: The BOOST pACP intervention was iteratively developed and adapted, based on feedback from families, healthcare professionals, and pACP experts (e.g., components were changed, deleted, and added; formulation of themes and associated questions were amended to enhance acceptability). The core components of the BOOST pACP intervention include: four ACP conversation sessions with the adolescent and/or parent(s) provided by a trained facilitator, structured by interactive conversation cards covering different ACP themes, followed by a transfer of information from the intervention facilitator to the paediatric oncologist. Core intervention components were deemed feasible by all participating families. CONCLUSION: The BOOST pACP intervention was developed by close involvement of both adolescent patients and their parents, healthcare professionals and pACP experts. The final intervention and supporting materials are considered appropriate and feasible. Its effectiveness in improving parent-adolescent communication on ACP themes is currently being tested in a multi-centre randomised controlled trial. Researchers aiming to develop a complex psychosocial intervention for a vulnerable target group could use the step-by-step approach described in this paper.
van Driessche A; Gilissen J; De Vleminck A; Kars M; Fahner J; van der Werff TBJ; Deliens L; Cohen J; Beernaert K
BMC Pediatrics
2022
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<a href="http://doi.org/10.1186/s12887-022-03247-9" target="_blank" rel="noreferrer noopener">10.1186/s12887-022-03247-9</a>
The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups
cancer; children; health professionals; life-limiting illness; paediatric palliative care; parents; support needs
BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents' needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested. METHODS: A non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018-2019) completed the pilot study. RESULTS: Two-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve. CONCLUSION: Using the pCSNAT provided a concise and comprehensive 'one stop shop' for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents' support needs to anticipate early and tailored supports including partnerships with the community.
Aoun SM; Gill FJ; Phillips MB; Momber S; Cuddeford L; Deleuil R; Stegmann R; Howting D; Lyon ME
Palliative Care and Social Practice
2020
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<a href="http://doi.org/10.1177/2632352420958000" target="_blank" rel="noreferrer noopener">10.1177/2632352420958000</a>
Metaphors that shape parents' perceptions of effective communication with healthcare practitioners following child death: a qualitative UK study
child death; paediatric A&E and ambulatory care; paediatric oncology; paediatric palliative care; parent perspectives
OBJECTIVES: To offer an interpretation of bereaved parents' evaluations of communication with healthcare practitioners (HCPs) surrounding the death of a child. DESIGN: Interpretative qualitative study employing thematic and linguistic analyses of metaphor embedded in interview data. SETTING: England and Scotland. PARTICIPANTS: 24 bereaved parents (21 women, 3 men). METHODS: Participants were recruited through the True Colours Trust website and mailing list, similar UK charities and word of mouth. Following interviews in person or via video-conferencing platforms (Skype/Zoom), transcripts first underwent thematic and subsequently linguistic analyses supported by NVivo. A focused analysis of metaphors used by the parents was undertaken to allow in-depth interpretation of how they conceptualised their experiences. RESULTS: The findings illuminate the ways parents experienced communication with HCPs surrounding the death of a child. Key findings from this study suggest that good communication with HCPs following the death of a child should acknowledge parental identity (and that of their child as an individual) and offer opportunities for them to enact this; taking account their emotional and physical experiences; and accommodate their altered experiences of time. CONCLUSIONS: This study suggests that HCPs when communicating with bereaved parents need to recognise, and seek to comprehend, the ways in which the loss impacts on an individual's identity as a parent, the 'physical' nature of the emotions that can be unleashed and the ways in which the death of a child can alter their metaphorical conceptions of time.
Turner S; Littlemore J; Taylor J; Parr E; Topping AE
BMJ Open
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/10.1136/bmjopen-2021-054991" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-054991</a>
Participatory Design of a Medication Module in an Electronic Medical Record for Paediatric Palliative Care: A Think-Aloud Approach with Nurses and Physicians
paediatric palliative care; electronic health records; usability; electronic medical records; participatory design; technology acceptance; user involvement
BACKGROUND: Electronic medical records (EMRs) play a key role in improving documentation and quality of care in paediatric palliative care (PPC). Inadequate EMR design can cause incorrect prescription and administration of medications. Due to the fact of complex diseases and the resulting high level of medical complexity, patients in PPC are vulnerable to medication errors. Consequently, involving users in the development process is important. Therefore, the aim of this study was to evaluate the acceptance of a medication module from the perspective of potential users in PPC and to involve them in the development process. METHODS: A qualitative observational study was conducted with 10 nurses and four physicians using a concurrent think-aloud protocol and semi-structured qualitative interviews. A qualitative content analysis was applied based on a unified theory of acceptance and use of technology. RESULTS: Requirements from the user's perspective could be identified as possible influences on acceptance and actual use. Requirements were grouped into the categories "performance expectancies" and "effort expectancies". CONCLUSIONS: The results serve as a basis for further development. Attention should be given to the reduction of display fragmentation, as it decreases cognitive load. Further approaches to evaluation should be taken.
Kernebeck S; Jux C; Busse TS; Meyer D; Dreier LA; Zenz D; Zernikow B; Ehlers JP
Children
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/10.3390/children9010082" target="_blank" rel="noreferrer noopener">10.3390/children9010082</a>
It was like an airbag, it cushioned the blow': A multi-site qualitative study of bereaved parents' experiences of using cooling facilities
Bereavement; grief; qualitative; paediatric palliative care; cold cot; cooling blanket; cooling facilities; cold bedrooms
BACKGROUND: Evidence on the benefits to parents of spending time with their child in the hours after their death means this is now routine practice. UK children's hospices offer parents the opportunity to extend this period by using cooling facilities (i.e. cooled 'bedrooms'; cooling blankets/mattresses) to slow deterioration. AIM: To explore parents' experiences of using cooling facilities and beliefs about how it shaped experiences of the very early days of bereavement, and on-going grieving processes. METHODS: Multi-site study involving in-depth interviews with parents bereaved in the previous 3 years. Grief theories informed data analysis, which employed narrative and thematic approaches. Eight hospices supported recruitment. RESULTS: Twenty-two mothers and eight fathers were recruited, representing 25% of families approached. Duration of use of a cooling facility varied, as did the amount of time spent with the child. All parents treasured this period, valuing the way it eased separation from their child and gave some control over when this happened. They believed all bereaved parents should have the opportunity to use a cooling facility. Using a cooling facility supported parents' engagement with grief tasks including acceptance of loss, processing emotional pain and facing changes to their lives brought about by their child's death. Memories and mementoes created during this period served to support on-going connections with the child. Parents who used a cooling facility at a hospice reported benefits of the setting itself. CONCLUSIONS: As well as easing the very early days of loss, use of cooling facilities may influence longer-term bereavement outcomes.
Hackett J; Heavey E; Beresford B
Palliative Medicine
2022
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<a href="http://doi.org/10.1177/02692163211059345" target="_blank" rel="noreferrer noopener">10.1177/02692163211059345</a>
The Challenges, Coping Mechanisms, and the Needs of the Inhospital Parents Caring for Children with Life-limiting Neurological Disorders: A Qualitative Study
Challenges; child; Coping; life-limiting condition; Need; Neurology; Paediatric palliative care
OBJECTIVES: Parents who have children with complex lifelong and life-limiting neurological conditions experienced many stresses and anxieties throughout their lives as caregivers. However, this information is still very limited. The study aimed to explore the challenges faced by parents with children who have complex neurological conditions, their coping strategies, needs, and expectations. MATERIALS AND METHODS: A semi-structured, in-depth interviews were conducted in the either Malay or English language among the parents of children with complex lifelong neurological conditions and have been on long-term in-patient hospital care. The interviews were audio-recorded and transcribed for thematic analysis. The qualitative study was conducted from October to November 2016 at the Paediatric Institute of Hospital Kuala Lumpur. Grounded theory was used to examine the qualitative data with inductive and deductive types of coding. The transcripts were read repeatedly to allow familiarity to the themes presented by the participants. Further discussions were conducted among the researchers to triangulate the information. RESULTS: A total of 11 parents were interviewed for this study. The thematic analysis resulted in 8 challenges: Physical wellbeing, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual. Coping strategies comprised problem focused issues related to the key challenges in the caregivers' context. Similar to the needs and expectations, the key themes were derived from the key understandings of the challenges and looking at the palliative care impacts for these children. CONCLUSION: There are various challenges faced by parents of children with life-limiting neurological disorders. Physical, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual Wellbeing can be a platform for the assessment of the caregivers' needs and the planning for palliative care support.
Taib F; Beng KT; Chan LC
Indian Journal of Palliative Care
2021
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<a href="http://doi.org/10.25259/ijpc_3_21" target="_blank" rel="noreferrer noopener">10.25259/ijpc_3_21</a>
Implementation and evaluation of clinical supervision for support workers in a paediatric palliative care setting
burnout; paediatric palliative care; health psychology; staff wellbeing; support worker; clinical supervision; Hca; peer supervision
Support workers represent a large proportion of the NHS workforce and yet their supervisory needs are often overlooked. This study focused specifically on a cohort of support workers in a community paediatric palliative care setting. Peer supervision was implemented for this group, initially face to face and then virtually. The experiences of clinical supervision for this group were investigated through responses to an online survey (n = 25) and two focus groups (n = 7). Survey data were analysed concurrently with a thematic analysis. The following themes and sub-themes were developed from transcribed focus groups: (1) Barriers to engagement (2) Being Listened to (3) What Worked Well: Logistics. Overall, delivery of supervision was effective to a mixed degree - though support workers appreciated a space to be listened to, their distrust of colleagues and other barriers impeded the capacity of supervision to achieve more than support and catharsis for this group. Future projects should focus on introducing more preliminary interventions to promote reflection and peer support for these groups as well as continue to consider the supervisory needs of support workers.
Beavis J; McKenzie S; Davis L; Ellison N
Clinical Child Psychology and Psychiatry
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/10.1177/13591045211055565" target="_blank" rel="noreferrer noopener">10.1177/13591045211055565</a>
Perinatal palliative care: a dedicated care pathway
Child; Hospice and Palliative Care Nursing; Hospice Care; Infant; life-limiting diseases; life-threatening diseases; neonatal mortality; neonatal pain management; Newborn Infant; paediatric palliative care; Palliative Care; Parents; perinatal palliative care; Pregnancy; Terminal Care
OBJECTIVE: Ensure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents. DESIGN: During 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment, Development and Evaluation (GRADE) method was applied), including the ethical and legal references, in order to propose shared care pathway. SETTING: Maternal-Infant Department of Padua's University Hospital. PATIENTS: PnPC eligible population has been divided into three main groups: extremely preterm newborns (first group), newborns with prenatal/postnatal diagnosis of life-limiting and/or life-threatening disease and poor prognosis (second group) and newborns for whom a shift to PnPC is appropriate after the initial intensive care (third group). INTERVENTIONS: The multidisciplinary WG has shared care pathway for these three groups and defined roles and responsibilities. MAIN OUTCOME MEASURES: Prenatal and postnatal management, symptom's treatment, end-of-life care. RESULTS: The best care setting and the best practice for PnPC have been defined, as well as the indications for family support, corpse management and postmortem counselling, as well suggestion for conflicts' mediation. CONCLUSIONS: PnPC represents an emerging field within the paediatric palliative care and calls for the development of dedicated shared pathways, in order to ensure accessibility and quality of care to this specific population of newborns.
Rusalen F; Cavicchiolo ME; Lago P; Salvadori S; Benini F
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-2019-001849" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001849</a>
Challenges of paediatric palliative care in the intensive care unit during the COVID-19 pandemic
Challenges; Covid-19; Paediatric intensive care unit; Paediatric palliative care
BACKGROUND: The integration of paediatric palliative care into the Iranian health system is essential. AIMS: The aim of this study was to identify the challenges of palliative care in the paediatric intensive care unit during COVID-19 through the experiences of healthcare providers. METHODS: A qualitative study with content analysis approach was conducted. Fifteen physicians and nurses were selected by purposeful sampling. The semi-structured, in-depth interviews were applied in the data collection. FINDINGS: Ten main categories were extracted from data analysis, including 'caring in COVID-19', 'communication and family centre care', 'breaking bad news', palliative care training', 'pain and symptom management', 'support of the child, family and clinical team', 'physical environment', 'guidelines', 'specialised staff' and 'home based palliative care'. CONCLUSION: Palliative care in the PICU faces several challenges, especially during COVID-19, but the clinical team are making every attempt to improve the comprehensive care of children and their families. Telehealth is important in COVID-19, and education is also a key component to improve palliative care in the PICU in Iran.
Hasanpour M; Pouraboli B; Mohammadpour M; Tahmasebi M; Sabeti F
International Journal of Palliative Nursing
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/10.12968/ijpn.2021.27.6.303" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.6.303</a>
Perceptions of nurses caring for children with life-limiting conditions in an acute setting in the Republic of Ireland
Life-limiting conditions; nurse perceptions; Paediatric nursing; Paediatric palliative care
BACKGROUND: Despite international developments in paediatric palliative care (PPC), nurses continue to report feeling unprepared, anxious and overwhelmed when caring for patients with palliative care needs. There is an identified need throughout the literature for improved education in the area of PPC, as well as the need to improve the support available to families and health professionals in order to provide this specialised care effectively. AIM: To examine the insights of nurses within the acute setting who are caring for children with life-limiting conditions, who have complex and/or palliative care needs in Ireland. METHOD: This was a qualitative study which used purposive, convenience sampling to gain participants (N=14) and semi-structured interviews to gather data. Thematic analysis was used to discuss the material under five core themes. FINDINGS: Results are discussed under the five core themes of: 'nurses' emotive journey when caring for children with life-limiting conditions', 'the barriers faced in caring for children with life-limiting conditions in the acute setting', 'the facilitators to caring for children with life-limiting conditions in the acute setting', 'education and training', and, 'how nurses cope when a child dies'. CONCLUSION: Each participant of this study described a particular affection towards caring for children with complex healthcare needs within the acute setting. However, many of the obstacles faced by nurses in the acute setting when providing this care were reported upon, these included inefficient training, education and support, an inadequate nursing environment to provide the desired level of care and the emotional toll of providing such an intense level of care.
Devitt A; Hara MO
International Journal of Palliative Nursing
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/10.12968/ijpn.2021.27.6.281" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.6.281</a>
Refractory symptoms in paediatric palliative care: can ketamine help?
children; clinical needs; ketamine; paediatric palliative care; refractory symptoms
BACKGROUND: One of the main challenges for paediatric palliative care (PPC) is the management of concomitant, different and severe symptoms that frequently affect the quality of life of PPC patients and are often refractory to commonly used pharmacological treatments. Consequently, many efforts are still needed to find the best therapeutic options to handle these refractory conditions. Since the first synthesis of ketamine in the 1960s, its pharmacokinetic and pharmacodynamic properties have been largely investigated and its potential wide range of clinical applications has become clear. However, this molecule still receives poor attention in some areas, including in children and PPC. This narrative review analyses the use of ketamine in children and the potential extension of its applications in PPC in order to provide new options for treatment in the PPC setting. METHODS: Scientific papers published before October 2020 on MEDLINE, EMBASE and the Cochrane Library were considered. The cited references of the selected papers and the authors' personal collections of literature were reviewed. The terms "palliative care", "ketamine", "neuropathic pain", "procedural pain", "status epilepticus", "refractory pain" and "child", adding "age: birth-18 years" on a further filter were used for the search. DISCUSSION: The use of ketamine in PPC should be more widely considered due to its overall favourable safety profile and its efficacy, which are supported by an increasing number of studies, although in settings different from PPC and of mixed quality. Ketamine should be proposed according to a case-by-case evaluation and the specific diagnosis and the dosage and route of administration should be tailored to the specific needs of patients. Furthermore, there is evidence to suggest that ketamine is safe and efficacious in acute pain. These findings can prompt further research on the use of ketamine for the treatment of acute pain in PPC. CONCLUSION: Ketamine could be a suitable option after the failure of conventional drugs in the treatment of different refractory conditions in PPC.
Benini F; Congedi S; Giacomelli L; Papa S; Shah A; Milani G
Drugs Context
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/10.7573/dic.2021-2-5" target="_blank" rel="noreferrer noopener">10.7573/dic.2021-2-5</a>
Palliative Care in Duchenne Muscular Dystrophy: A Study on Parents' Understanding
Children with duchenne muscular dystrophy; paediatric palliative care; parent understanding; parents
INTRODUCTION: Duchene muscular dystrophy (DMD) is a neuromuscular disease of childhood, which has clear progression. The international standardized care guidelines for DMD suggest that palliative care is essential for the affected children. OBJECTIVE: To explore the parent's understanding of palliative care services available for children with DMD and the challenges faced by them in utilizing the same. METHODS: A cross-sectional qualitative exploratory study was conducted among six families of boys diagnosed with DMD. A semi-structured interview guide with prompts was used to conduct in-depth interviews which lasted for an average of 1 h. Thematic analysis was done to identify the pattern or themes. RESULTS: The major themes identified were "palliative care, living with DMD, Awareness about palliative care services and challenges." Awareness about palliative care services is the dominant theme identified as influencing rest of the experiences narrated by the parents of children with DMD. DISCUSSION: Integration of palliative care services from an early stage of the illness can help the child to make transition from one stage to another stage of the illness. To ensure the utilization of the available palliative care services, there is a need to create awareness about it among the general public. CONCLUSION: Introducing the concept of palliation of symptoms and ensuring quality of life of the child with DMD by accessing the available services can aid the parents to reach out for help for their child.
Sadasivan A; Warrier MG; Polavarapu K; Preethish-Kumar V; Nair MG; Keerthipriya MS; Vengalil S; Sagar JV; Kishore T; Nalini A; Thomas PT
Indian Journal of 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/10.4103/ijpc.ijpc_259_20" target="_blank" rel="noreferrer noopener">10.4103/ijpc.ijpc_259_20</a>
Evaluating the validity, reliability and clinical utility of the Music therapy Sensory Instrument for Cognition, Consciousness and Awareness (MuSICCA): protocol of a validation study
Adolescent; Child; Reproducibility of Results; Ireland; Music Therapy; Consciousness; paediatric palliative care; rehabilitation medicine; developmental neurology & neurodisability; State Medicine; neurological injury; paediatric neurology
INTRODUCTION: A growing number of children and young people are surviving severe acquired brain injuries due to advances in healthcare. However, many fail to emerge from coma and continue to live with disorders of consciousness (DOC). Diagnostic, clinical and ethical challenges are prominent in this group. Misdiagnosis can have severe consequences for children and their families, including inadequate care, insufficient access to rehabilitation and stimulation, reduced accessibility to services and inappropriately limited opportunities for participation. The proposed project will develop and validate a diagnostic measure that supports detailed goal-planning-the Music therapy Sensory Instrument for Cognition, Consciousness and Awareness (MuSICCA). METHODS AND ANALYSIS: Face validity will be assessed using a short questionnaire and the MuSICCA will be amended if face validity is insufficient. Once face validity is sufficient, 80 participants with suspected DOC will be recruited from multiple sites around the UK, USA and Ireland.Validity will be assessed using external reference standards (Coma Recovery Scale-Revised, Coma Near-Coma Scale and Nociception Coma Scale). Intra-rater reliability will be established using repeated ratings of video recordings from the assessment sessions. Inter-rater reliability will be assessed through video ratings by a second blinded assessor. In addition to these analyses, the clinical utility of the MuSICCA will be evaluated using a questionnaire to be completed by clinicians and relatives of the participants following the completion of the MuSICCA assessment. ETHICS AND DISSEMINATION: Ethical approval has been obtained for this study from the Research Ethics Committee and Health Research Authority of the National Health Service of the UK (ID: 167534). Results will be presented at national and international conferences, published in scientific journals and disseminated to participant representatives, clinicians, educators and care providers. TRIAL REGISTRATION DETAILS: This study was registered at ClinicalTrials.gov Protocol Registration and Results System on 7(th) August 2019 (ID: NCT04050995); Pre-results.
Pool JW; Siegert RJ; Taylor S; Dunford C; Magee W
BMJ Open
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/10.1136/bmjopen-2020-039713" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2020-039713</a>
Survey of paediatricians caring for children with life-limiting conditions found that they were involved in advance care planning
Child; Surveys and Questionnaires; Communication; Parents; communication; Pediatricians; paediatric palliative care; Advance Care Planning; shared decision-making
AIM: Advance care planning (ACP) is a strategy to align future care and treatment with preferences of patients and families. This study assesses the experiences of ACP among paediatricians caring for children with life-limiting conditions. METHODS: Paediatricians from five Dutch university hospitals and the national oncology centre completed a survey during May to September 2017, which investigated experiences with ACP in their most recent case of a deceased child and with ACP in general. RESULTS: A total of 207 paediatricians responded (36%). After exclusion of responses with insufficient data (n = 39), 168 were analysed (29%). These included experiences with an individual case in 86%. ACP themes were discussed with parents in all cases. Topics common to many cases were diagnosis, life expectancy, care goals, the parent's fears and code status. ACP conversations occurred with children in 23% of cases. The joy in living was the most frequent topic. The frequency of ACP conversations was insufficient according to 49% of the respondents. In 60%, it was stated that ACP has to result in a documented code status. CONCLUSION: Paediatricians reported having ACP conversations mainly with parents focusing on medical issues. There was limited insight into the child's preferences for care and treatment.
Fahner JC; Rietjens JAC; van der Heide A; van Delden JJM; Kars MC
Acta Paediatrica
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/10.1111/apa.15061" target="_blank" rel="noreferrer noopener">10.1111/apa.15061</a>
Experiences of general practice of children with complex and palliative care needs and their families: a qualitative study
paediatrics; paediatric palliative care; community child health; primary care
OBJECTIVES: To investigate the views and experiences of general practice of children with life-limiting and life-threatening conditions, and their family members, through secondary analysis of a qualitative serial interview study. Thematic analysis was conducted on all interview data relating to experiences of primary care. SETTING: West Midlands, UK. PARTICIPANTS: A total of 31 participants (10 children with life-limiting and life-threatening conditions and 21 family members) from 14 families. STUDY DESIGN AND SETTING: Secondary thematic analysis of qualitative interview data from a study carried out in the West Midlands, UK. METHOD: 41 serial interviews with 31 participants from 14 families: 10 children aged 5-18 years with life-limiting and life-threatening conditions, and 21 of their family members. RESULTS: Three key themes emerged: (1) poor experiences of general practice cause children and families to feel isolated, (2) children and families value support from general practice, and (3) there are practical ways through which general practice has the potential to provide important aspects of care. Children and families reported benefits from fostering their relationship with their general practice in order to access important aspects of care, including the assessment and management of acute illness, chronic disease and medication reviews, and holistic support. CONCLUSION: Children with life-limiting and life-threatening conditions and their families value the involvement of general practice in the care, alongside their paediatric specialists. Ways of developing and providing such support as part of an integrated system of care need to be developed.
Mitchell S; Harding S; Samani M; Slowther AM; Coad J; Dale J
BMJ Open
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/bmjopen-2020-041476" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2020-041476</a>
Cold bedrooms' and other cooling facilities in UK children's hospices, how they are used and why they are offered: A mixed methods study
grief; paediatric palliative care; bereavement; Cold bedrooms; cold cot; cooling blanket; cooling facilities
BACKGROUND: The death of a child is acutely distressing. Evidence on the benefits and value to parents of spending time with their dead child have now been integrated into routine practice and is regarded as a bereavement support intervention. UK children's hospices have a tradition of using 'cooling facilities' (cold bedrooms, cooled blanket/mattress) to extend this period of time by slowing deterioration of the body. AIMS: To describe: (1) type and use of cooling facilities in UK children's hospices, policies and practices regarding their use, and any changes over time. (2) Director of care's views on the purpose of cooling facilities and the rationale for hospice-specific practices. METHODS: An explanatory mixed-methods design consisting two phases: a crosssectional survey of directors of care of UK children's hospices (n = 52) followed by semi-structured telephone interviews with a sub-sample of respondents. Survey data were analysed using descriptive statistics and interview data using directed content analysis. RESULTS: 41/52 hospices completed the survey and 13 directors of care were interviewed. All hospices had cooling facilities. Some offered use of portable cooling facilities at home, though take-up appears low. Hospices differed in approaches to managing care and duration of use. Views on whether parents should observe deterioration informed the latter. Directors of care believed they provide families with time to say 'goodbye' and process their loss. Challenges for staff were reported.
Hackett J; Beresford B
Palliative Medicine
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/10.1177/0269216320984335" target="_blank" rel="noreferrer noopener">10.1177/0269216320984335</a>
Paediatric oncology providers' perspectives on early integration of paediatric palliative care
end-of-life; communication; paediatric palliative care; children with cancer; interdisciplinary collaboration; paediatric oncology providers
BACKGROUND: Healthcare providers' perceptions of palliative care in children with cancer influence care management, specifically that of its early integration. Thus, it is crucial to understand the perspectives of the providers on early integration of palliative care so that measures to create informed care decisions are based on reconciling their views. AIMS: To explore the perceptions of paediatric oncology providers at the Children's Cancer Institute (CCI) in Lebanon regarding the integration of early paediatric palliative care (PPC) in the management of children with cancer. METHOD(S): A qualitative descriptive research design with focus groups was used in a leading paediatric oncology setting. FINDINGS: The thematic analysis yielded four themes: (1) healthcare providers understood palliative care as pain relief and psychological support mainly at the end of life; (2) the timing of integrating PPC is linked to end of life, advanced disease or treatment failure; (3) interdisciplinary collaboration is important for addressing patients' and families' needs effectively; and (4) communication with the child and family is one of the most difficult aspects of integrating PPC. CONCLUSION(S): This study demonstrated the perceptions of healthcare providers about early palliative care in paediatric oncology in Lebanon. It also highlighted the importance of interdisciplinary collaboration and effective communication with the child and family for better management of PPC.
Saad R; Kurdahi L B; Yazbick-Dumit N; Irani C; Muwakkit S
International journal of palliative nursing
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/10.12968/ijpn.2020.26.3.100" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2020.26.3.100</a>
The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups
children; cancer; life-limiting illness; non-cancer; parents; paediatric palliative care; article.; interest with respect to the research; support needs; and/or publication of this; authorship; health professionals
BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents' needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested. METHODS: A non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018-2019) completed the pilot study. RESULTS: Two-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve. CONCLUSION: Using the pCSNAT provided a concise and comprehensive 'one stop shop' for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents' support needs to anticipate early and tailored supports including partnerships with the community.
Aoun S M; Gill F J; Phillips M B; Momber S; Cuddeford L; Deleuil R; Stegmann R; Howting D; Lyon M E
Palliative Care and Social Practice
2020
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<a href="http://doi.org/10.1177/2632352420958000" target="_blank" rel="noreferrer noopener">10.1177/2632352420958000</a>
The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review
cancer; children; health professionals; life-limiting illness; non-cancer; Paediatric palliative care; parents; support needs
BACKGROUND: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers' needs. AIM: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. DESIGN: A scoping review. DATA SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). RESULTS: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. CONCLUSION: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.
Gill FJ; Hashem Z; Stegmann R; Aoun SM
Palliative Medicine
2020
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<a href="http://doi.org/10.1177/0269216320967593" target="_blank" rel="noreferrer noopener">10.1177/0269216320967593</a>
Clinical Supervision for Support Workers in Paediatric Palliative Care: A Literature Review
burnout; Clinical supervision; complex health; health psychology; paediatric palliative care; staff wellbeing; support worker
Providing home care to children with complex physical health needs is an emotionally challenging role. Extant literature and documents such as the Cavendish Review (2013) have reported that a large proportion of care for this population is carried out by non-registered staff (support workers). Provision of clinical supervision for nurses working in palliative care is increasing, however, supervision needs of support workers are commonly neglected. This paper sought to synthesise what is known about clinical supervision practices for support workers in paediatric palliative care (PPC). A literature review was conducted in accordance with integrative review guidelines. 315 papers were identified initially, 15 studies were included in this review. Four commonalities were identified: importance of team cohesion, varying degrees of formality, self-awareness and practicalities. Support workers received varying forms of supervision and some facilitators faced organisational difficulties involving staff in supervision. Support workers who received staff support generally appreciated it in recognition that their work is complex and emotionally difficult. This paper highlighted that further research should investigate the efficacy of clinical supervision as a method of reducing stress and burnout for support workers. Any implementation of supervision should involve a considered approach to training and supervision to ensure fidelity.
Beavis J; Davis L; McKenzie S
Clinical Child Psychology and Psychiatry
2020
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<a href="http://doi.org/10.1177/1359104520961431" target="_blank" rel="noreferrer noopener">10.1177/1359104520961431</a>
Barriers in care for children with life-threatening conditions: a qualitative interview study in the Netherlands
medical ethics; paediatric palliative care; palliative care
OBJECTIVE: To identify barriers, as perceived by parents, to good care for children with life-threatening conditions. DESIGN: In a nationwide qualitative study, we held in-depth interviews regarding end-of-life care with parents of children (aged 1 to 12 years) who were living with a life-threatening illness or who had died after a medical trajectory (a maximum of 5 years after the death of the child). Sampling was aimed at obtaining maximum variety for a number of factors. The interviews were transcribed and analysed. SETTING: The Netherlands. PARTICIPANTS: 64 parents of 44 children. RESULTS: Parents identified six categories of difficulties that create barriers in the care for children with a life-threatening condition. First, parents wished for more empathetic and open communication about the illness and prognosis. Second, organisational barriers create bureaucratic obstacles and a lack of continuity of care. Third, parents wished for more involvement in decision-making. Fourth, parents wished they had more support from the healthcare team on end-of-life decision-making. Fifth, parents experienced a lack of attention for the family during the illness and after the death of their child. Sixth, parents experienced an overemphasis on symptom-treatment and lack of attention for their child as a person. CONCLUSIONS: The barriers as perceived by parents focussed almost without exception on non-medical aspects: patient-doctor relationships; communication; decision-making, including end-of-life decision-making; and organisation. The perceived barriers indicate that care for children with a life-threatening condition focusses too much on symptoms and not enough on the human beings behind these symptoms.
Brouwer M; Maeckelberghe E L M; van der Heide A; Hein I; Verhagen E
BMJ Open
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/10.1136/bmjopen-2019-035863" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2019-035863</a>
Paediatric palliative care in practice: Perspectives between acute and long-term healthcare teams
clinical ethics; continuity of care; paediatric palliative care; quality of care
AIM: To explore and compare acute and long-term care professionals' perspectives about paediatric palliative care. METHODS: Focus group interviews were conducted in 2016-2017 with professionals from acute (Emergency Department, Intensive Care Unit) and long-term care (Complex Care Service, Palliative Care) teams. RESULTS: Fifty-eight participants were enrolled. Palliative care definitions were similar throughout groups: to provide active care early in the illness, focusing on the child as a whole and supporting families. Each group perceived a different role in the patient's illness trajectory, reflecting their own culture of care. They demonstrated important differences in their approach to palliative care. Disagreements regarding when or how to discuss goals of care were expressed. Acute care professionals reported discomfort when having to introduce these discussions for the first time, while long-term care professionals perceived negative judgements about their patients' quality of life by acute care teams during health events. Personalised care, communication with families and continuity of care were thought to be key elements to improve care. CONCLUSION: Paediatric palliative care is well recognised throughout specialties, yet continuity of care is challenged by groups' roles and interventions in a patient's illness. A reflective and mutual clinical approach is needed to improve quality of care and professionals' satisfaction.
Côté A; Payot A; Gaucher N
Acta Paediatrica
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/10.1111/apa.14969" target="_blank" rel="noreferrer noopener">10.1111/apa.14969</a>
Who needs and continues to need paediatric palliative care? An evaluation of utility and feasibility of the Paediatric Palliative Screening scale (PaPaS)
Admission; Home hospice; Needs assessment; Paediatric palliative care; Screening tool
BACKGROUND: While the populations of children who can benefit from paediatric palliative care (PPC) have been broadly defined, identifying individual patients to receive PPC has been problematic in practice. The Paediatric Palliative Screening scale (PaPaS) is a multi-dimensional tool that assesses palliative care needs in children and families to facilitate timely referrals. This study evaluates its use to manage new referrals and ongoing review of patients receiving home-based PPC in Singapore. METHODS: Using a retrospective cohort study design, 199 patients admitted to receive PPC via clinician screening were scored using PaPaS. Eighty-four patients in two groups were scored again at one of two following milestones: one-year service continuation mark or point of discharge before a year. Accuracy measures were compared against clinical assessment. RESULTS: 96.98% of patients scored 15 and above on admission (indicating need for PPC). Patients assessed at following milestones were effectively stratified; those who continued to receive service after 1 year scored significantly higher (M = 19.23) compared to those who were discharged within a year (M = 7.86). Sensitivity and specificity for PaPaS were calculated at 82.54 and 100% respectively. Overall congruence with clinician-based decisions supports the utility of PaPaS as a screening tool in PPC. Recommendations to improve the scale further are proposed. CONCLUSION: The PaPaS is a practical screening tool that signposts PPC needs within the clinical setting. This facilitates early referrals to PPC, without having to specify individual prognoses that are often uncertain. Other benefits include optimised continuity of care and implications for resource allocation.
Chong P H; Soo J; Yeo Z Z; Ang R Q; Ting C
BMC Palliative Care
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/10.1186/s12904-020-0524-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-0524-4</a>
Thematic analysis of spousal interaction patterns among Asian parents of children with chronic life-threatening illness
Asia; bereavement; paediatric palliative care; qualitative research; spousal relationship; thematic analysis
OBJECTIVE: This is the first known study which examines the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from the time of providing care to their child through bereavement. This study is informed by earlier findings that when a child is diagnosed with a chronic life-threatening illness, parents are faced with multiple stressors, leaving them with little time to invest in their spousal relationship. PARTICIPANTS AND SETTING: A constructivist-phenomenological research paradigm was adopted and meaning-oriented interviews were conducted with 20 parental units (i.e., 6 couples, 12 lone mothers and 2 lone fathers) of Chinese, Malay and Indian ethnicities who lost their child to chronic life-threatening illness in Singapore. RESULTS: Qualitative thematic analysis of the data revealed four themes, which describe the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from caregiving through bereavement. Findings reveal participants' tendency to concentrate on pragmatic, solution-focused communication during the period of caregiving (pragmatic interaction), avoid discussion about their emotional pain as a means of protecting their spouse (partner-oriented self-regulation), respect and acknowledge their spouse's personal coping strategies (empathic responding) and show greater appreciation and emotional expression within the spousal relationship after their child's death (affective appreciation). CONCLUSION: Engaging in pragmatic discussions, deferring emotion-focused and potentially distressing conversations, and acknowledging their spouse's need for personal space are important coping strategies for Asian couples facing their child's chronic life-threatening illness and in the immediate aftermath of his/her death. Bereaved couples who have processed their grief individually feel ready to share their reflections with their spouse, deriving meaning and greater relational closeness through such disclosure. These findings are discussed from a cultural lens, with recommendations for healthcare professionals working with Asian parents of children with chronic life-threatening illness.
Ho A H Y; Dutta O; Tan-Ho G; Choo P Y; Low X C; Chong P H; Ng C; Ganapathy S
BMJ Open
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/10.1136/bmjopen-2019-032582" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2019-032582</a>
Children's unmet palliative care needs: a scoping review of parents' perspectives
advance care planning; paediatric palliative care; review; hospice care; parental experience; service evaluation
BACKGROUND: Children with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services actually meet families' needs by exploring and identifying the parents' perspectives of unmet needs. AIM: To identify what published evidence is available on the unmet needs of children with life-limiting conditions and their families, from the perspective of parents, internationally. ELIGIBILITY CRITERIA: Inclusion criteria: papers from the perspective of parents of children aged 0-19 years, who have a life-limiting condition and are receiving palliative care. Exclusion criteria: those papers not written in English, not reporting primary research and discussing children who died from stillbirth, accidental or unexpected circumstance. CHARTING METHODS: A scoping review was conducted in accordance with the methods of Arksey and O'Malley. SOURCES OF EVIDENCE: The electronic databases PubMed, MEDLINE, CINAHL and PsycINFO were searched. Key terms included: parent, needs, met/unmet/satisfaction, palliative/supportive/end of life care, life-limiting/life-threatening illness, infants/children/young people. RESULTS: Total hit indicated 5975 papers for screening. Fifty-five papers met the scoping review criteria. The majority used mixed-methods approaches inclusive of: questionnaires, self-report measures, in-depth interviews, focus groups, case record analysis and art-based workshops. Unmet needs included: respite care, coordination and organisation of care, psychological support and professional communication skills. CONCLUSIONS: The findings suggest many unmet needs from the parent's perspective, across several aspects of the Quality Standards and Children's Palliative Care Frameworks. Further research is needed which explores the parent's unmet needs in palliative care services.
Constantinou G; Garcia R; Cook E; Randhawa G
BMJ Supportive Palliative Care
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/10.1136/bmjspcare-2018-001705" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001705</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>
Advanced care planning five years on: an observational study of multi-centred service development for children with life-limiting conditions
child and family wishes; advanced care planning; paediatric palliative care; end of life care
BACKGROUND: Advanced planning for end of life care (EOLC) is an essential component of care for children with life-limiting and life threatening (LLLT) conditions. We report the findings of a follow-up study (R2) completed five years after the initial review (R1). Documented advanced care planning (ACP) was measured against published children's palliative care standards. THE PURPOSE: to compare how planning has developed over the five years across a range of children's health care services in a single UK city. METHOD: Manual retrospective review of health care records, using focused data collection. INCLUSION CRITERIA: children who died before the age of 18 years, as a consequence of a LLLT condition, over an 18 month period and had lived locally to a regional children's hospital. RESULTS: The first review (R1) included 48 patients with 114 health care records: median age at death 0 years (range 0 to 18 years). The follow-up review (R2) included 47 patients, with 80 health care records: median age at death 2 years (range 0 to 17 years). The proportion of records containing evidence of a prognostic discussion had risen from 73% (R1) to 91% (R2), p<0.005. The proportion of health care records with ACP was consistent between R1 and R2 (75% and 72% respectively). An ACP tool was found to be in regular use in R2 compared to no examples in R1. The acute hospital trust plans were more detailed in R2 than R1. The proportion of cases where preferred location of death matched actual location was stable, around half. CONCLUSIONS: EOLC conversations increased over the five years studied. In the acute hospital trust, there is evidence of better quality ACP although quantity is stable: enabled by the implementation of an ACP tool and education programme. Challenges remain in engaging children and young people in advanced planning.
Martin A E; Beringer A J
Child: Care, Health and Development
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/10.1111/cch.12643" target="_blank" rel="noreferrer noopener"> 10.1111/cch.12643</a>
Total Pain' in Children with Severe Neurological Impairment
cerebral palsy; Chronic Pain; cognitive impairment; neurological impairment; Paediatric palliative care; persistent pain; 'Total Pain'
Many children with palliative care needs experience difficulty in managing pain. Perhaps none more so than those with severe neurological impairment. For many years; behaviours in these children were misunderstood. As a result; pain was poorly recognised and inadequately managed. Significant advances have been made in the assessment and management of pain in this challenging group of patients. We summarise these advances; drawing on our own experience working with infants; children and young adults with palliative care needs within a UK tertiary paediatric palliative care service. We expand on the recent understanding of 'Total Pain'; applying a holistic approach to pain assessment and management in children with severe neurological impairment.
2018-01
Warlow TA; Hain RDW
Children (basel)
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/10.3390/children5010013" target="_blank" rel="noreferrer">10.3390/children5010013</a>
The journey through care: study protocol for a longitudinal qualitative interview study to investigate the healthcare experiences and preferences of children and young people with life-limiting and life-threatening conditions and their families in the West Midlands, UK
organisation of health services; Paediatric palliative care; Palliative Care; Qualitative Research
INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their conditions are often complex and highly unpredictable. Palliative care is advocated for people with life-limiting and life-threatening conditions, but these services for children are highly variable in terms of availability and scope. Little is known about the lived experiences and preferences of children and their families in terms of the palliative care that they do, or do not, receive. This study aims to produce an in-depth insight into the experiences and preferences of such children and families in order to develop recommendations for the future provision of services. The study will be carried out in the West Midlands, UK. METHODS AND ANALYSIS: A qualitative study comprising longitudinal interviews over a 12-month period with children (aged 5-18 years) living with life-limiting or life-threatening conditions and their family members. Data analysis will start with thematic analysis, followed by narrative and cross-case analysis to examine changing experiences and preferences over time, at the family level and within the wider healthcare system. Patient and public involvement (PPI) has informed the design and conduct of the study. Findings will be used to develop recommendations for an integrated model of palliative care for children in partnership with the patient and public involvement (PPI) group. ETHICS AND DISSEMINATION: Ethical approval was granted in September 2016 by the National Health Service Health Research Authority (IRAS ID: 196816, REC reference: 16/WM/0272). Findings will be of immediate relevance to healthcare providers, policy-makers, commissioners and voluntary sector organisations in the UK and internationally. Reports will be prepared for these audiences, as well as for children and their families, alongside academic outputs.
2018-01
Mitchell S; Slowther AM; Coad J; Dale J
Bmj Open
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/bmjopen-2017-018266" target="_blank" rel="noreferrer">10.1136/bmjopen-2017-018266</a>
A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease
Chd; Hypoplastic Left Heart Syndrome; Paediatric palliative care; Parental stress
Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle population may have the same benefit for mothers. In this pilot randomised trial of early palliative care, mothers of infants with prenatal single-ventricle diagnoses completed surveys measuring depression, anxiety, coping, and quality of life at a prenatal visit and neonatal discharge. Infants were randomised to receive early palliative care - structured evaluation, psychosocial/spiritual, and communication support before surgery - or standard care. Among 56 eligible mothers, 40 enrolled and completed baseline surveys; 38 neonates were randomised, 18 early palliative care and 20 standard care; and 34 postnatal surveys were completed. Baseline Beck Depression Inventory-II and State-Trait Anxiety Index scores exceeded normal pregnant sample scores (mean 13.76+/-8.46 versus 7.0+/-5.0 and 46.34+/-12.59 versus 29.8+/-6.35, respectively; p=0.0001); there were no significant differences between study groups. The early palliative care group had a decrease in prenatal to postnatal State-Trait Anxiety Index scores (-7.6 versus 0.3 in standard care, p=0.02), higher postnatal Brief Cope Inventory positive reframing scores (p=0.03), and a positive change in PedsQL Family Impact Module communication and family relationships scores (effect size 0.46 and 0.41, respectively). In conclusion, these data show that mothers of infants with single-ventricle disease experience significant depression and anxiety prenatally. Early palliative care resulted in decreased maternal anxiety, improved maternal positive reframing, and improved communication and family relationships.
2018-01
Hancock HS; Pituch K; Uzark K; Bhat P; Fifer C; Silveira M; Yu S; Welch S; Donohue J; Lowery R; Aiyagari R
Cardiology In The Young
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/10.1017/s1047951117002761" target="_blank" rel="noreferrer">10.1017/s1047951117002761</a>
Exploring the rewards and challenges of paediatric palliative care work - a qualitative study of a multi-disciplinary children's hospice care team
burnout; Child; Children's Hospice; Clinical reflection; Clinical supervision; end of life; hospice care; Hospices; Only Child; Paediatric palliative care; Palliative Care; Qualitative Research; Reward; Staff support; Work-related stress
BACKGROUND: Children's hospices are a key provider of palliative care for children and young people with life-limiting and life-threatening conditions. However, despite recent policy attention to the provision of paediatric palliative care, little is known about the role of children's hospice staff and the factors that may impact on their wellbeing at work. This study explored the rewards and challenges of working in a children's hospice with an aim to identify staff support and development needs. METHODS: We conducted an exploratory, qualitative study involving thematic analysis of semi-structured interviews with 34 staff and three focus groups with 17 staff working in a multi-disciplinary care team in a UK children's hospice. RESULTS: Participants identified rewards and challenges related to the direct work of caring for children and their families; team dynamics and organisational structures; and individual resilience and job motivation. Participants described the work as emotionally intensive and multi-faceted; 'getting it right' for children was identified as a strong motivator and reward, but also a potential stressor as staff strived to maintain high standards of personalised and emotional care. Other factors were identified as both a reward and stressor, including team functioning, the allocation of work, meeting parent expectations, and the hospice environment. Many participants identified training needs for different aspects of the role to help them feel more confident and competent. Participants also expressed concerns about work-related stress, both for themselves and for colleagues, but felt unable to discuss this at work. Informal support from colleagues and group clinical reflection were identified as primary resources to reflect on and learn from work and for emotional support. However, opportunities for this were limited. CONCLUSIONS: Providing regular, structured, and dedicated clinical reflection provides a mechanism through which children's hospice staff can come together for support and learning, and demonstrates an organisational commitment to staff wellbeing and development. Being aware of children's hospice specific rewards and challenges can help to ensure that staff feel supported and competent in their role. Breaking down barriers to discussing work-related stress and enhancing awareness about early signs of burnout is also important.
Taylor J; Aldridge J
Bmc Palliat Care
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/10.1186/s12904-017-0254-4" target="_blank" rel="noreferrer">10.1186/s12904-017-0254-4</a>
Symptom management and psychological support for families are the cornerstones of end-of-life care for children with spinal muscular atrophy type 1
Dyspnoea; End Of Life; Paediatric Palliative Care; Pain Relief; Spinal Muscular Atrophy Type 1
AIM: This study described end-of-life care for children affected by spinal muscular atrophy type 1 (SMA1), which is characterised by progressive muscle weakness and develops in the first six months of life. METHODS: We retrospectively analysed 17 children (13 boys) who attended the University of Padua's paediatric palliative care centre in Italy from March 2000 to March 2015. All the children received supportive care without proactive respiratory intervention to prolong survival. RESULTS: The median age at admission was 3.57 months and the median age at death was 6.80 months. The most frequent symptoms were dyspnoea and pain. In the last 72 hours of life 15/17 children required more intense doses of morphine and, or, benzodiazepines for intractable dyspnoea and pain, but deep palliative sedation was not needed. Airway suction to manage secretions and nasogastric tubes were required in all cases. The place of death was previously planned by the parents in all cases - home, hospital or hospice - and 15/17 deaths occurred in that place. We also interviewed 16 of the 17 parents after their child died. CONCLUSION: Our study found that symptom management and psychological support for families were the cornerstones of end-of-life care for children with SMA1. This article is protected by copyright. All rights reserved.
Pede CD; Agosto C; Tommasi V; Gregorio A; Benini F
Acta Paediatrica
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).
10.1111/apa.14086
Parents spend an average of nine hours a day providing palliative care for children at home and need to maintain an average of five life-saving devices
Carers; Home-based Care; Life-limiting Diseases; Paediatric Palliative Care; Parents
AIM: This Italian study investigated home-based palliative care for young children and how long it took parents to meet their needs. METHODS: The study population consisted of 33 families with a child under the responsibility of the Veneto Regional Center for Pediatric Palliative Care, northern Italy, who needed medical support in at least two of the following areas: respiratory, feeding, pain and seizures. RESULTS: The children had a mean age of 6.8 +/-4.7 years. We found that 72% of the patients needed medical devices for feeding, 36% had a tracheostomy and 55% were on mechanical ventilatory support. The children needed an average of five different life-supporting medical appliances and the time taken to provide for their care increased significantly with each additional appliance (p=0.016). Their most time-consuming daily needs were feeding (174 minutes) and support when they woke up at night (67 minutes). The average daily time that parents spent taking care of their child amounted to eight hours and 54 minutes per day. CONCLUSION: Parents providing palliative care for children with life-limiting diseases spent an average of nine hours a day caring for them each day and had to maintain an average of five medical appliances. This article is protected by copyright. All rights reserved.
Lazzarin P; Schiavon B; Brugnaro L; Benini F
Acta Paediatrica
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).
10.1111/apa.14098
Palliative Medicines For Children – A New Frontier In Paediatric Research
End-of-life Care; Hospice Care; Medicines For Children; Paediatric Medicines; Paediatric Palliative Care; Symptom Management
Objectives This paper seeks to highlight from a UK perspective the current lack of a research evidence base in paediatric palliative care that has resulted in a paucity of available medicines with appropriate formulations (strength and dosage form) to provide symptom management for children with life-limiting illnesses and to raise awareness of this group of ‘therapeutic orphans’. Currently, clinicians have limited, often unsuitable medication choices for their paediatric palliative care patients, with little hope of moving away from the status quo. Key Findings Most medicines used in children receiving palliative care are old and off-patent drugs, developed for and tested in an adult population. Many are not available in suitable formulations (dosage form and strength) for administration to children, and there are often no age-related profiles of adverse drug reactions or for safe dosing. Summary Existing regional paediatric palliative care networks and support organisations should lobby funding bodies and the academic community to support appropriate research for this group of therapeutic orphans. Support must also be provided to pharmaceutical companies in the development of suitable products with appropriate formulations.
Jamieson L; Wong Ian CK; Craig Finella; Christiansen N; Brombley Karen; Tuleu Catherine; Harrop Emily
Journal Of Pharmacy & Pharmacology
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).
10.1111/jphp.12615