How Do Children With Medical Complexity Die? A Scoping Review
Child; child; cohort analysis; human; chronic disease; quality of life; North America; systematic review; review; health care utilization; personal experience; Only Child; clinical practice; child death; qualitative research; knowledge gap; place of death; chronic patient; biological marker
Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is known about illness trajectories, communication, and decision-making experiences. Objective: To synthesize existing literature and characterize the end-of-life experience in CMC. Methods: A literature search of MEDLINE, CINAHL, PsycINFO, Scopus, Embase, and Google Scholar was conducted up to August 26, 2021. Studies reporting CMC at end of life were included and the extracted data were analyzed descriptively. Findings: Of 1535 publications identified, 23 studies were included. Most studies (15/23 [65%]) were published from 2015 to 2021 and were quantitative in nature (20/23 [87%]). The majority of studies that extracted data from a single country (18/20 [90%]) originated from North America. Study outcomes were categorized into four main domains: (1) place of death (2) health care use (3) interventions received or withdrawn (4) communication, and end-of-life experiences. The weighted percentage of in-hospital CMC deaths was 80.6%. Studies reported that CMC had increased health care use and were subjected to more intensive interventions at end of life compared with non-CMC. Qualitative studies highlighted the following themes: Intrinsic prognostic uncertainty, differing perspectives of the child's quality of life, the chronic illness experience, a desire to have parental expertise acknowledged, surprise at the terminal event, the experience of multiple losses, with an overarching theme of the need for compassionate care at end of life. Conclusions: This scoping review highlighted important characteristics of end of life in CMC, outlining the emerging evidence and knowledge gaps on this topic. A better understanding of this cohort of seriously and chronically ill children would serve to inform clinical practice, service development, and future research.
Chan Ng GM; Bourassa MH; Patel H
Journal of Palliative Medicine
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/10.1089/jpm.2023.0322" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0322</a>
Palliative care for children: methodology for the development of a national clinical practice guideline
child; article; human; palliative therapy; systematic review; advance care planning; randomized controlled trial; shared decision making; practice guideline; therapy; psychosocial care; qualitative research; bereavement; drug administration; special situation for pharmacovigilance; evidence based medicine; methodology
Background: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence. Methods: The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence. Results: The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence. Conclusions: The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations.
van Teunenbroek KC; Kremer LCM; Verhagen AAE; Verheijden JMA; Rippen H; Borggreve BCM; Michiels EMC; Mulder RL
BMC Palliative Care
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/10.1186/s12904-023-01293-3" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01293-3</a>
Healthy siblings' perspectives about paediatric palliative care: A qualitative systematic review and meta-synthesis
child; human; male; palliative therapy; systematic review; review; Cinahl; walking; therapy; cognition; thematic analysis; coping behavior; sibling; family structure
Background: Siblings of children requiring palliative care are often forgotten and overlooked, as the focus tends to be on the ill child and their parents. Limited knowledge of non-bereaved siblings' perspectives makes it challenging to provide appropriate support for them. A review of existing literature is thus needed to better understand the experiences of these siblings and to identify research gaps that may require further examination. Aim: To consolidate the available qualitative evidence on the perspectives of non-bereaved healthy siblings regarding paediatric palliative care. Design: A qualitative systematic review using a meta-synthesis approach was conducted. Data sources: Six electronic databases (PubMed, CINAHL, PsycINFO, Embase, Scopus and ProQuest Dissertations and Theses Global) were searched from each database's inception date until October 2022. The search included qualitative and mixed-method studies that reported the perceptions and associations of siblings of patients receiving paediatric palliative care. Data were synthesised using thematic analysis. Results: Eleven studies were included. The overarching theme of the review would be 'A walking shadow: Living in the darkness shaped by the dying sibling', and three key themes and nine subthemes were identified from the included articles: (1) Changing family dynamics; (2) Impact on school and socialisation and (3) Psychological impact and coping. Conclusion: Siblings demonstrated negative psychological impacts and were affected by changing family structure and relationships. However, socialisation with society, and varied coping skills such as cognitive coping and using distraction techniques, were significant for siblings to go through this journey and even led to some positive outcomes for them.
Rajendran P; Jarasiunaite-Fedosejeva G; Isbir GG; Shorey S
Palliative Medicine
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/10.1177/02692163231217597" target="_blank" rel="noreferrer noopener">10.1177/02692163231217597</a>
The NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care
child; adult; article; controlled study; human; male; newborn; palliative therapy; newborn death; perinatal death; terminal care; total quality management; systematic review; interview; newborn intensive care; health care personnel; therapy; Delphi study
Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals, parents may make the decision to stop active treatment and focus on ensuring their baby has a 'good' death. There is very little evidence to support the clinical application of neonatal palliative care and/or end-of-life care, resulting in variation in clinical provision between neonatal units. Developing core outcomes for neonatal palliative care would enable the development of measures of good practice and enhance our care of families. The aim of this study is to develop a core outcome set with associated tools for measuring neonatal palliative care. Method: This study has four phases: (1) identification of potential outcomes through systematic review and qualitative interviews with key stakeholders, including parents and healthcare professionals (2) an online Delphi process with key stakeholders to determine core outcomes (3) identification of outcome measures to support clinical application of outcome use (4) dissemination of the core outcome set for use across neonatal units in the UK. Key stakeholders include parents, healthcare professionals, and researchers with a background in neonatal palliative care. Discussion: Developing a core outcome set will standardise minimum reported outcomes for future research and quality improvement projects designed to determine the effectiveness of interventions and clinical care during neonatal palliative and/or end-of-life care. The core outcome set will provide healthcare professionals working in neonatal palliative and/or end-of-life support with an increased and consistent evidence base to enhance practice in this area. Trial registration: The study has been registered with the COMET initiative ( https://www.comet-initiative.org/Studies/Details/1470 ) and the systematic review is registered with the International Prospective Register of Systematic Reviews (PROSPERO) (CRD42023451068).
Gallagher K; Chant K; Mancini A; Bluebond-Langner M; Marlow N
BMC Palliative Care
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/10.1186/s12904-023-01326-x" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01326-x</a>
A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments
Humans; Child; child; Adolescent; Quality of Life; human; inflammatory bowel disease; quality of life; Family; chronic pain; social support; family; child parent relation; social work; prognosis; systematic review; sibling; Chronic Pain; Analgesics Opioid; ethnography; Anthropology Cultural; personal experience; cultural anthropology; outcome assessment; health care personnel; wellbeing; health service; disease severity; adolescent; social isolation; headache; analgesia; pediatric patient; abdominal pain; social care; peer group; patient-reported outcome; pain assessment; Review; racism; narcotic analgesic agent; pain severity; fibromyalgia; complex regional pain syndrome; endometriosis; family life; juvenile rheumatoid arthritis; migraine; musculoskeletal pain
Background: Chronic non-cancer pain in childhood is widespread, affecting 20% to 35% of children and young people worldwide. For a sizeable number of children, chronic non-cancer pain has considerable negative impacts on their lives and quality of life, and leads to increased use of healthcare services and medication. In many countries, there are few services for managing children’s chronic non-cancer pain, with many services being inadequate. Fourteen Cochrane Reviews assessing the effects of pharmacological, psychological, psychosocial, dietary or physical activity interventions for managing children’s chronic non-cancer pain identified a lack of high-quality evidence to inform pain management. To design and deliver services and interventions that meet the needs of patients and their families, we need to understand how children with chronic non-cancer pain and their families experience pain, their views of services and treatments for chronic pain, and which outcomes are important to them. Objectives: 1. To synthesise qualitative studies that examine the experiences and perceptions of children with chronic non-cancer pain and their families regarding chronic non-cancer pain, treatments and services to inform the design and delivery of health and social care services, interventions and future research. 2. To explore whether our review findings help to explain the results of Cochrane Reviews of intervention effects of treatments for children's chronic non-cancer pain. 3. To determine if programme theories and outcomes of interventions match children and their families’ views of desired treatments and outcomes. 4. To use our findings to inform the selection and design of patient-reported outcome measures for use in chronic non-cancer pain studies and interventions and care provision to children and their families. The review questions are:. 1. How do children with chronic non-cancer pain and their families conceptualise chronic pain?. 2. How do children with chronic non-cancer pain and their families live with chronic pain?. 3. What do children with chronic non-cancer pain and their families think of how health and social care services respond to and manage their child’s chronic pain?. 4. What do children with chronic non-cancer pain and their families conceptualise as ‘good’ chronic pain management and what do they want to achieve from chronic pain management interventions and services?. Search methods: Review strategy: we comprehensively searched 12 bibliographic databases including MEDLINE, CINAHL, PsycInfo and grey literature sources, and conducted supplementary searches in 2020. We updated the database searches in September 2022. Selection criteria: To identify published and unpublished qualitative research with children aged 3 months to 18 years with chronic non-cancer pain and their families focusing on their perceptions, experiences and views of chronic pain, services and treatments. The final inclusion criteria were agreed with a patient and public involvement group of children and young people with chronic non-cancer pain and their families. Data collection and analysis: We conducted a qualitative evidence synthesis using meta-ethnography, a seven-phase, systematic, interpretive, inductive methodology that takes into account the contexts and meanings of the original studies. We assessed the richness of eligible studies and purposively sampled rich studies ensuring they addressed the review questions. Cochrane Qualitative Methods Implementation Group guidance guided sampling. We assessed the methodological limitations of studies using the Critical Appraisal Skills Programme tool. We extracted data on study aims, focus, characteristics and conceptual findings from study reports using NVivo software. We compared these study data to determine how the studies related to one another and grouped studies by pain conditions for synthesis. We used meta-ethnography to synthesise each group of studies separately before synthesising them all together. Analysis and interpretation of studies involved children ith chronic non-cancer pain and their families and has resulted in theory to inform service design and delivery. Sampling, organising studies for synthesis, and analysis and interpretation involved our patient and public involvement group who contributed throughout the conduct of the review. We used the GRADE-CERQual (Confidence in the Evidence from Reviews of Qualitative research) approach to assess our confidence in each review finding. We used a matrix approach to integrate our findings with existing Cochrane Reviews on treatment effectiveness for children’s chronic non-cancer pain. Main results: We synthesised 43 studies sampled from 170 eligible studies reported in 182 publications. Included studies involved 633 participants. GRADE-CERQual assessments of findings were mostly high (n = 21, 58%) or moderate (n = 12, 33%) confidence with three (8%) low or very low confidence. Poorly managed, moderate or severe chronic non-cancer pain had profound adverse impacts on family dynamics and relationships; family members’ emotions, well-being, autonomy and sense of self-identity; parenting strategies; friendships and socialising; children’s education and future employment prospects; and parental employment. Most children and parents understood chronic non-cancer pain as having an underlying biological cause and wanted curative treatment. However, families had difficulties seeking and obtaining support from health services to manage their child’s pain and its impacts. Children and parents felt that healthcare professionals did not always listen to their experiences and expertise, or believe the child's pain. Some families repeatedly visited health services seeking a diagnosis and cure. Over time, some children and families gave up hope of effective treatment. Outcomes measured within trials and Cochrane Reviews of intervention effects did not include some outcomes of importance to children and families, including impacts of pain on the whole family and absence of pain. Cochrane Reviews have mainly neglected a holistic biopsychosocial approach, which specifies the interrelatedness of biological, psychological and social aspects of illness, when selecting outcome measures and considering how chronic pain management interventions work. Authors' conclusions: We had high or moderate confidence in the evidence contributing to most review findings. Further research, especially into families' experiences of treatments and services, could strengthen the evidence for low or very low confidence findings. Future research should also explore families' experiences in low- to middle-income contexts; of pain treatments including opioid use in children, which remains controversial; and of social care services. We need development and testing of family-centred interventions and services acceptable to families. Future trials of children's chronic non-cancer pain interventions should include family-centred outcomes. Copyright © 2023 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.
France E; Uny I; Turley R; Thomson K; Noyes J; Jordan A; Forbat L; Caes L; Silveira Bianchim M
Cochrane Database of Systematic Reviews
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/10.1002/14651858.CD014873.pub2" target="_blank" rel="noreferrer noopener">10.1002/14651858.CD014873.pub2</a>
Pediatric Palliative Care Program Implementation in Low- and Middle-income Countries: A Systematic Review Using a Strengths, Weaknesses, Opportunities and Threats Analysis
child; Palliative Care; human; palliative therapy; hospice; education; systematic review; human experiment; psychosocial care; conference abstract; multidisciplinary team; middle income country; government; lowest income group; Preferred Reporting Items for Systematic Reviews and Meta-Analyses; resource limited setting
Background/aims: Of the estimated 21 million children world-wide who need access to pediatric palliative care (PPC), about 97% currently reside in low-and middle-income countries (LMIC). Access to PPC programs in LMIC are limited, and successful strategies and barriers to program implementation remain understudied. We conducted a systematic review to characterize the strengths, weaknesses, opportunities, and threats (SWOT) of PPC program implementation in LMIC. <br/>Method(s): Using PRISMA guidelines, we searched key databases from inception to April 2022 and reviewed references manually. Eligible abstracts and articles included content related to composition, role, function, purpose, development, or implementation of PPC programs in LMIC. <br/>Result(s): From 7,846 titles and abstracts and 229 full-text articles, we identified 62 eligible abstracts and articles; 16 articles were added following manual searching of references, resulting in 78 items (28 abstracts, 50 articles). A total of 82 unique programs were described, including 9 from low-income, 27 from lower-middle income, and 44 from upper-middle income countries. Common strengths included presence of multidisciplinary teams and psychosocial care. Common weaknesses included lack of PPC training and research infrastructure. Common opportunities involved collaboration between institutions, government support, and growth of PPC education. Common threats comprised limited access to PPC services, medications, and other resources. (Table Presented) <br/>Conclusion(s): PPC programs are being successfully implemented in resource limited settings. Hospice and palliative medicine organizations should sponsor PPC clinicians to describe and disseminate more detailed descriptions of successes and challenges with program implementation to help build and grow further PPC initiatives in LMICs.
Kenneson SA; Hughes-Visentin A; Doherty M; Kaye E; Wrigley J; Gujral P; Lodhi S; Phadke S; Rayala S; Gentica X; Malipeddi D; Sarvode S
Palliative Medicine
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/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</a>
A Systematic Review of Educational Interventions to Equip Health and Social Care Professionals to Promote End-of-Life Supportive Care when a Parent with Dependent Children is Dying with Cancer
Parents; Children; End of life; Cancer; Family-centered care; Systematic review
OBJECTIVES: This systematic review aimed to determine the content, mode of delivery, assessment, and outcomes of educational interventions to equip health and social care professionals (HSCPs) when delivering end-of-life (EoL) supportive care for parents dying with cancer who have dependent children. DATA SOURCES: The review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A search strategy was developed with assistance of subject librarians and peer-reviewed using the Peer Review of Electronic Search Strategies tool. A search of MEDLINE OVID, CINAHL, EMBASE, PsycINFO, Web of Science, and ERIC electronic databases and gray literature was conducted. Quality assessment was conducted on included studies. Data synthesis was conducted using a convergent integrated approach. CONCLUSION: The review identified just two educational interventions, highlighting the dearth of educational interventions available to HSCPs to provide supportive care to families when a parent is at EoL with cancer. The identified interventions were of good methodological quality and were positively evaluated by participants, enhancing their confidence to engage in EoL conversations. It is imperative that interventions that use robust evaluation methods are developed and made accessible to HSCPs. IMPLICATIONS FOR NURSING PRACTICE: The review highlights the urgent need for the development of interventions for HSCPs to provide supportive care to families when a parent is at EoL with cancer. This is a fundamental aspect of care, and it is imperative that accessible educational interventions are developed to improve the quality of care and reduce distress for patients and their families.
Sheehan S; Hanna JR; Drury A; McCance T; Semple CJ; O'Neill C
Seminars in Oncology Nursing
2023
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<a href="http://doi.org/10.1016/j.soncn.2023.151474" target="_blank" rel="noreferrer noopener">10.1016/j.soncn.2023.151474</a>
Vulnerabilities experienced by family members/caregivers of children with chronic conditions
Child; article; human; palliative therapy; systematic review; interview; caregiver; Only Child; health care personnel; wellbeing; health service; thematic analysis; qualitative research; family; chronic disease; child health; vulnerability; locomotion
The objective was to know the vulnerabilities experienced by family members/caregivers of children with a chronic. Qualitative research supported by the theoretical framework of the French philosopher Rosello Un which 15 family members/caregivers of children with chronic conditions participated in the study. The information was collected in the years 2018 and 2019 and submitted to thematic analysis. The results are presented in three themes: The disease as an expression of the vulnerability of being a child; The child's chronic illness as a condition of vulnerability of the family member/caregiver; The support of support networks: potentialities and vulnerabilities in the daily life of children with chronic conditions and family members/caregivers. Knowing the components of vulnerability experienced by the families of children with chronic conditions is complex, as it requires analyzing and reflecting on the situations these families face, considering their peculiarities, feelings, family organization and the accessibility they have to health services. Therefore, knowledge about the context in which these families are inserted is essential to establish an adequate planning of health actions aimed at promoting their well-being.Copyright © 2023, Institute de Medicina Social da UERJ. All rights reserved.
Milbrath VM; Gabatz RIB; Vaz JC; Hense TD
Physis
2023
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<a href="http://doi.org/10.1590/S0103-7331202333034.en" target="_blank" rel="noreferrer noopener">10.1590/S0103-7331202333034.en</a>
Support for families of a child in a palliative situation in the cardiac pediatric intensive care unit
child; female; human; male; Intensive Care Units; patient care; palliative therapy; intensive care; pediatric intensive care unit; nursing; terminal care; Medline; systematic review; Cinahl; satisfaction; rare disease; conference abstract; decision making; memory; holistic care; heart
Background and Aim: The birth prevalence of children with congenital heart disease is about one percent a year. This might mean that a palliative diagnosis maybe directly exists from birth due to the complexity of the congenital heart disease. The required intensive care stay that may follow after birth presents a challenge for parents. To care for the family, the concept of family-centered care is presented and the involvement of the pediatric palliative care team is considered. The aim was to identify nursing measures which support families of a child in a palliative situation in the cardiac pediatric intensive care unit. Method(s): This literature search was conducted between January 1, 2022 and May 31, 2022 in Medline via PubMed, CINAHL and Cochrane research databases and was based on defined inclusion and exclusion criteria. Studies from the PICU and NICU as well as studies focusing on end-of-life care were considered, as it can be assumed that the results may be transferable. Studies with an exclusive oncological focus or specific rare diseases were excluded. Result(s): Seven main categories could be identified to support the parents. The communication, the parental participation in the decision-making process, continuity of care and relationship building. Also the griefing process and memory making takes place. At least challenges in the intensive care unit and satisfaction with care and unmet needs are highlighted. Conclusion(s): The included studies suggest important features of communication and can be partially transferred to the implementation of nursing measures with the help of family-centered care. The necessity of the need to involve parents in the care of the child can be demonstrated in the majority of the studies. Therefore, appropriate communication and parental participation in the whole process should be considered as the focus of care. For holistic care, the involvement of the palliative pediatric care team should be evaluated early. Due to the limitations of the studies and the low level of evidence, the results must be viewed with caution. Further research is needed to comprehensively map the specific area of the cardiac pediatric intensive care.
Wieden N; Eissler AB; Kroger Y
Cardiology in the Young
2023
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<a href="http://doi.org/10.1017/S1047951123001099" target="_blank" rel="noreferrer noopener">10.1017/S1047951123001099</a>
The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review
Child; child; female; human; male; palliative therapy; Medline; pediatrics; systematic review; review; attention; Cinahl; Only Child; child parent relation; Embase; PsycINFO; religion; data source; empiricism
Background: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential questions, which are easily overlooked by healthcare professionals. Aim: We explored how the spiritual dimension becomes manifest in parents of children in pediatric palliative care. Design: A mixed-methods systematic review was conducted, registered in Prospero (2021 CRD42021285318). Data sources: PubMed, CINAHL, Embase, PsycInfo, and Cochrane were searched for articles published between January 1, 2015 and January 1, 2023. We included original empirical studies that reported on spirituality of parents of seriously ill children, from parents' perspectives. Results: Sixty-three studies were included: 22 North-American, 19 Asian, 13 European, 9 other. Studies varied in defining spirituality. We identified five different aspects of spirituality: religion, hope, parental identity, personal development, and feeling connected with others. All aspects could function as source of spirituality or cause of spiritual concern. Sources of spirituality helped parents to give meaning to their experiences and made them feel supported. However, parents also reported struggling with spiritual concerns. Several parents highlighted their need for professional support. Conclusions: Although studies vary in defining spirituality, reports on spirituality focus on how parents connect to their faith, others, and themselves as parents. Healthcare professionals can support parents by paying attention to the spiritual process parents are going through. More research is needed into how healthcare professionals can support parents of seriously ill children in this process.
Engel M; Brouwer MA; Jansen N; Leget C; Teunissen SCCM; Kars MC
Palliative Medicine
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/10.1177/02692163231186173" target="_blank" rel="noreferrer noopener">10.1177/02692163231186173</a>
The FATHER Model of Loss and Grief After Child's Life-Limiting Illness
mental health; Child; child; article; female; human; male; palliative therapy; practice guideline; Medline; anxiety; systematic review; grief; guilt; ethnography; Cinahl; Only Child; Scopus; fatigue; deterioration; injury; mother; meta analysis; quality control; ScienceDirect; ambivalence; father; directory; disenfranchised grief; Preferred Reporting Items for Systematic Reviews and Meta-Analyses; unresolved grief
Context: Loss of a child to a life-limiting condition (LLC) is 1 of the most traumatic life events for parents. Research focusing on fathers' experiences is in its infancy. Objectives: Using a meta-ethnographic approach, we systematically reviewed the literature around fathers' predeath and postdeath experiences of loss and grief. Data sources: We searched Medline, Scopus, Cumulative Index to Nursing and Allied Health Literature, and Science Direct, and used the meta-ethnography reporting guidelines; the Preferred Reporting Items for Systematic Reviews and Meta-Analyses; and sampling strategy, type of study, approaches, range of years, limits, inclusion and exclusions, terms used, and electronic sources recommendations. Study selection: We used the Guide to Children's Palliative Care and the directory of LLCs to select qualitative articles published up until the end of March 2023 that described fathers' predeath and postdeath experiences of loss and grief after their child's LLC. We excluded studies that failed to differentiate outcomes between mothers and fathers. Data extraction: Extracted data included study details, participants' characteristics, response rate, source of participants, method and time of data collection, children's characteristics, and quality assessment. First-order and second-order data were also extracted. Results: Forty studies informed a FATHER model of loss and grief. This highlights both similarities (ambivalence, trauma responses, fatigue, anxiety, unresolved grief, guilt) and distinct features defining the predeath and postdeath experiences of loss and grief. Limitations: There was a bias toward greater mother participation in research. Specific categories of fathers remain underrepresented in palliative care literature. Conclusions: Many fathers experience disenfranchised grief and deterioration in mental health after a child's diagnosis and postdeath. Our model opens possibilities for personalized clinical support in the palliative care system for fathers.
Postavaru GI; Hamilton J; Davies S; Swaby H; Michael A; Swaby R; Mukaetova-Ladinska EB
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/10.1542/peds.2022-059122" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-059122</a>
Parental Ethical Decision Making and Implications for Advance Care Planning: A Systematic Review and Secondary Analysis of Qualitative Literature from England and Wales, Germany, and the Netherlands
child; Decision Making; Germany; female; human; male; Netherlands; systematic review; review; advance care planning; Wales; ethics; care behavior; decision making; thematic analysis; qualitative research; theoretical study; Advance Care Planning; ethical decision making; England; law suit; secondary analysis; Wales; Netherlands; Germany
Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make ethical decisions is an under-researched area. A possible model for parental decision making is the Ethics of Care (EoC) theory. Ethical decision making within this framework aims to preserve the caring relationship. What is right or wrong depends on the circumstances at the time. <br/>Objective(s): To identify the parental ethical values and determine whether parental decision making is consistent with EoC, a systematic review and secondary analysis of qualitative research from England and Wales, the Netherlands, and Germany was performed. As part of a larger project investigating conflicts between parents and clinicians about children's medical treatment, the choice of countries was determined by differences in litigation. <br/>Method(s): Eight databases were searched for articles published between 2010 and 2020 reporting on at least one medical treatment decision made by parents of a child with any life-limiting condition and analyzed using reflexive thematic analysis. Twelve included articles directly addressing advance care planning (ACP) were reanalyzed to investigate whether this specific decision parents are increasingly being asked to make is also consistent with EoC. <br/>Result(s): Forty-three articles were included. Parents use the same 6 ethical values which, consistent with EoC, are mostly in the context of their relationship with the child. All values contributed to the previously identified theme of "being a good parent/person." Analysis of parental decision making in ACP confirmed consistency with EoC. <br/>Conclusion(s): The parental decision-making process is consistent with EoC. That parental decisions aim to maintain the caring relationship and are dependent on the circumstances at the time has implications for parental decision making in ACP and should be reflected in future policies.
Neefjes V
Journal of Palliative Medicine
2023
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<a href="http://doi.org/10.1089/jpm.2022.0520" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0520</a>
Are we on the same page? Exploring pediatric patients' involvement with advance care planning
cystic fibrosis; child; adult; female; human; male; caregiver; palliative therapy; neurology; outcome assessment; young adult; review; Medline; advance care planning; systematic review; emotion; randomized controlled trial (topic); acquired immune deficiency syndrome; adolescent; Advance Care Planning; patient participation; pediatric patient
Aasen ERHV; oSovik ML; Stordal K; Lee A
Journal of Pain and Symptom Management
2023
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<a href="https://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub">10.1016/j.jpainsymman.2023.04.003</a>
Palliative care referral criteria and application in pediatric illness care: A scoping review
Palliative Care; palliative care; Pediatrics; chronic disease; Referral and Consultation; systematic review; palliative medicine; referral and consultation
BACKGROUND: Specialty pediatric palliative care services can help to address unmet care needs for children with complex and serious illness. Current guidelines support the identification of unmet palliative care needs; however, it is unknown how these guidelines or other clinical characteristics influence pediatric palliative care referral in research and practice. AIM: To evaluate the identification and application of palliative care referral criteria in pediatric illness care and research. DESIGN: A scoping review with a content analysis approach to summarize results. DATA SOURCES: Five electronic databases (PubMed, CINAHL, PsycINFO, SCOPUS, and Academic Search Premier) were used to identify peer-reviewed literature published in English between January 2010 and September 2021. RESULTS: We included 37 articles focused on the referral of pediatric patients to palliative care teams. The identified categories of referral criteria were: disease-related; symptom-related; treatment communication; psychosocial, emotional, and spiritual support; acute care needs; end-of-life care needs; care management needs; and self-referrals for pediatric palliative care services. We identified two validated instruments to facilitate palliative care referral and seven articles which described population-specific interventions to improve palliative care access. Nineteen articles implemented a retrospective health record review approach that consistently identified palliative care needs with varying rates of service use. CONCLUSIONS: The literature demonstrates inconsistent methods for identifying and referring children and adolescents with unmet palliative care needs. Prospective cohort studies and clinical trials would inform more consistent pediatric palliative care referral practices. More research is needed on palliative care referral and outcomes in community-focused pediatrics.
Bernier Carney KM; Goodrich G; Lao A; Tan Z; Kiza AH; Cong X; Hinderer KA
Palliative Medicine
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="https://journals.sagepub.com/doi/10.1177/02692163231163258">10.1177/02692163231163258</a>
Religious and cultural challenges in paediatrics palliative care: A review of literature
cultural anthropology; palliative therapy; pediatrics; religion; autopsy; caregiver; coping behavior; data base; decision making; human; interpersonal communication; life; organ donor; Palliative Care; review; software; systematic review; terminal care; terminally ill patient
Introduction: Paediatric palliative care aims to improve the quality of life of both the patients and their families when facing life-threatening illnesses. However, regions with strong religious and cultural practices made caring for ill children even more challenging due to the various, and at times, contrasting expectations from the families and the healthcare providers. Objective(s): This article aimed to discover the challenges of paediatric palliative care delivery in the context of culture and religion. Method(s): A systematic review was conducted through an online search of three databases for free open access articles and book chapters published between 2000 and 2018: Medline, Scopus and Google Scholar. Search key terms included: culture, custom, spiritual, ethnic, or religion [AND] end-of-life, palliative care, cancer, hospice, [AND] children or paediatrics. Result(s): Thirty-two (32) articles met the eligibility criteria. Out of these, five distinct themes emerged on the basis of implications for paediatrics palliative care. These include the (i) role of religion and culture in decision-making, (ii) the involvement of clerics towards the end-of-life, (iii) specific communication with the children and their caregivers about imminent death, (iv) the acceptance of autopsy and organ donation, and (v) spiritual coping strategies. Discussion(s): This review paper provided an insight into the impact of religion and topographical culture to the paediatrics end-of-life care. Cultural and religious traditions are dynamic and cannot be generalized to all families, hence a guided framework is recommended for clinicians working in diverse ethnic population in dealing with culturally sensitive, end-of-life care.Copyright © 2019 Pediatric Hematology Oncology Chapter of Indian Academy of Pediatrics
Khalid K; Ku Md Saad S; Abd Ghani NA; Mohamed Abdul Kadher AN
Journal of Pediatric Hematology/Oncology
2019
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<a href="http://doi.org/10.1016/j.phoj.2019.11.001" target="_blank" rel="noreferrer noopener">10.1016/j.phoj.2019.11.001</a>
Geographic Information Systems Utilization in Pediatric End-of-Life Research: A Scoping Review
geographic information system; hospice care; palliative therapy; article; child; clinical practice; data visualization; Geographic Information Systems; human; Information Systems; software; systematic review
Currently, little is known about how geographic information systems (GIS) has been utilized to study end-of-life care in pediatric populations. The purpose of this review was to collect and examine the existing evidence on how GIS methods have been used in pediatric end-of-life research over the last 20 years. Scoping review method was used to summarize existing evidence and inform research methods and clinical practice was used. The Preferred Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA) was utilized. The search resulted in a final set of 17 articles. Most studies created maps for data visualization and used ArcGIS as the primary software for analysis. The scoping review revealed that GIS methodology has been limited to mapping, but that there is a significant opportunity to expand the use of this methodology for pediatric end-of-life care research.
Qualls KA; Svynarenko R; Cozad MJ; Keim-Malpass J; Huang G; Lindley LC
American Journal of Hospice and Palliative Care
2023
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<a href="http://doi.org/10.1177/10499091231165276" target="_blank" rel="noreferrer noopener">10.1177/10499091231165276</a>
Health Professionals' Views on Pediatric Palliative Care: A Mixed Methods Systematic Review
Palliative Care; Professional-Family Relations; Terminal Care; Communication; Collaboration; Hospitals; Attitude of Health Personnel; Professional-Patient Relations; Health Services Accessibility; Human; Education; Reward; Evaluation; Pediatric Care; PubMed; Communities; Multidisciplinary Care Team; Systematic Review; Multimethod Studies
Introduction: Providing care for children in the end of life entails special challenges and exceptional requirements for all health professionals involved. Aim: The aim of the study is to explore the views of health professionals about pediatric palliative care. Methods: Systematic review of published relevant studies in PubMed and Scopus. The bibliography search took place for articles published from 2017 to 2022. The study included articles on qualitative, quantitative or mixed studies of health professionals in hospitals or in the community that provided pediatric palliative care to people <25 years of age, published from 2015 onwards, exploring their views on palliative care. Results: The results of 15 studies performed on 1,505 health professionals showed that their views focused on the rewards gained and challenges experienced from providing pediatric palliative care, the relationship they develop with the child and family, the collaboration and role of the interdisciplinary team, the role of communication and education, and to the effect of the care on patients and their families as well as on their own personal lives. They identify barriers at individual, team, organizational, hospital, community, and policy level. To address these barriers, they used strategies to support health professionals, patients and families, work and care organization strategies, strategies to improve relationships, communication, education, collaboration and intercultural care. Conclusions: Pediatric palliative care is considered both a reward and a challenge for health professionals but it is obvious that their poor and/or inadequate education and insufficient organization of work and care is in need of improvement in order to provide it effectively.
Anastasopoulou E; Dousis E
International Journal of Caring Sciences
2022
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
Understanding Parent Experiences of End-Of-Life Care for Children: A Systematic Review and Qualitative Evidence Synthesis
end-of-life care;Child; Palliative Care; Parents; qualitative research; systematic review
BACKGROUND: An estimated 21 million children worldwide would benefit from palliative care input and over 7 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support. There is a lack of synthesised research about how parents experience the care delivered to their child at the end of life. AIM: To systematically identify and synthesise qualitative research on parents' experiences of end-of-life care of their child. DESIGN: A qualitative evidence synthesis was conducted. The review protocol was registered in PROSPERO (CRD42021242946). DATA SOURCES: MEDLINE, EMBASE, CINAHL, PsycINFO and Web of Science databases were searched for qualitative studies published post-2000 to April 2020. Studies were appraised for methodological quality and data richness. Confidence in findings was assessed by GRADE-CERQual. RESULTS: About 95 studies met the eligibility criteria. A purposive sample of 25 studies was taken, of good-quality papers with rich data describing the experience of over 470 parents. There were two overarching themes: parents of children receiving end-of-life care experienced a profound need to fulfil the parental role; and care of the parent. Subthemes included establishing their role, maintaining identity, ultimate responsibility, reconstructing the parental role, and continuing parenting after death. CONCLUSIONS: Services delivering end-of-life care for children need to recognise the importance for parents of being able to fulfil their parental role and consider how they enable this. What the parental role consists of, and how it's expressed, differs for individuals. Guidance should acknowledge the need to enable parents to parent at their child's end of life.
Barrett L; Fraser L; Noyes J; Taylor J; Hackett J
Palliative Medicine
2022
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<a href="http://doi.org/10.1177/02692163221144084" target="_blank" rel="noreferrer noopener">10.1177/02692163221144084</a>
Designing the physical environment for inpatient palliative care: A narrative review
Hospice Care; Hospital Care; Hospital Patient; Narrative; Nursing Home; Palliative Therapy; Cinahl; Family Management; Hospice Care; Hospital Care; Medline; PsycINFO; Adult; Built Environment; Child; Comfort; Conception; Data Extraction; Data Synthesis; Emergency Ward; Family Interaction; Family Management; Hospice Care; Hospital Care; Nursing Home Care; Female; Furniture; Human; Human Dignity; Male; Nursing Home; Privacy; Review; Systematic Review; Thematic Analysis
Background: It is essential that the physical environments in which inpatient palliative care is provided support the needs of patients and the facilitate the multidimensional delivery of palliative care. This review aims to identify the features and characteristics of inpatient palliative care environments that enhance or detract from the patient experience; and identify opportunities for progress within this field. Method(s): Three databases were searched: MEDLINE (1946-2020), PsycINFO (1806-2020) and CINAHL (1937-2020). Articles were screened by title and abstract with included studies read in full for data extraction. Data synthesis involved thematic analysis informed by the findings of the included literature. Inclusion criteria were studies with empirical methodology examining adult palliative care in the hospital, hospice or nursing home environment. Studies that examined palliative care delivered within the emergency department, ICU or within the home were excluded, as were those related to paediatric palliative care. Result(s): Four main themes were identified: the provision of privacy, facilitating interactions with family, facilitating comfort through homeliness and connections to nature. Conclusion(s): The board acceptance of single rooms as the preeminent design solution for supporting privacy, dignity and family interaction, alongside current conceptions of homeliness that typically focus on matters of interior design, are limiting possibilities for further design innovation within palliative care settings. Research that investigates a broader set of design strategies through which the built environment can support care, alongside enhanced interdisciplinary collaboration, could positively contribute to patient and family experiences of inpatient palliative care.Copyright © Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.
Wong K; McLaughlan R; Collins A; Philip J
BMJ Supportive and Palliative Care
2021
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<a href="http://doi.org/10.1136/bmjspcare-2021-003087" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003087</a>
The Loss of a Child, Bereavement and the Search for Meaning: A Systematic Review of the Most Recent Parental Interventions
Child Loss; Interventions; Meaning-centered approach; Parental Bereavement; Systematic Review
The loss of a child is considered one of the most tragic experiences that parents can go through. The present systematic review aims to compile the most recently published interventions in bereavement support for these parents, being particularly interested in those made from a meaning-centered approach. The search for the units of analysis was guided by the standards of the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) Statement and was entered in Web of Science, Scopus and EBSCO, obtaining a total of 485 papers of which 21 have been included in this article. The results found are heterogeneous in terms of the type of intervention used and results, but they all seem to have something in common: the lack of research and reliable interventions that exist for this population. With this systematic review we intend to achieve a better understanding of these parents' needs and to highlight the enormous work that still remains ahead in order to make their bereavement experience a little less devastating.
Pelacho-Rios L; Bernabe-Valero G
Current Psychology
2022
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<a href="http://doi.org/10.1007/s12144-022-03703-w" target="_blank" rel="noreferrer noopener">10.1007/s12144-022-03703-w</a>
Pediatric Palliative Care through the Eyes of Healthcare Professionals, Parents and Communities: A Narrative Review
Cinahl; Embase; Medical Subject Headings; Medline; Palliative care; PsycINFO; United States; article; attitudes; child; community sample; controlled study; developing country; eligibility; female; high income country; human; knowledge; male; narrative; palliative therapy; pediatric; systematic review; terminal care
BACKGROUND AND OBJECTIVE: Pediatric palliative care is a holistic approach that aims to enhance the quality of life of seriously ill children and their families. Despite the documented benefits, many barriers challenge early integration of such care. The lack of knowledge and negative attitudes and beliefs toward pediatric palliative care are often cited among these barriers. This narrative review aims to summarize the existing literature regarding knowledge, attitudes and beliefs toward pediatric palliative care among healthcare professionals, parents and communities. METHOD(S): Four databases were searched: Medline, EMBASE, PsychINFO, and Cumulative Index to Nursing and Allied Health Literature Complete. The search strategy combined Medical Subject Headings, terms and keywords using Boolean operators to retrieve references addressing each concept of interest within the English literature. The initial search was conducted in August 2020 and updated in August 2021. No date limits were set. Two independent authors screened the retrieved papers for eligibility. KEY CONTENT AND FINDINGS: The majority of the 60 retrieved articles (n=49, 82%) were derived from high-income countries, with almost half of them from the United States. The references from developing countries were scattered across continents. The perspectives of healthcare professionals were more extensively explored compared to parents and community samples. Reports describe confusion between pediatric palliative care and end-of-life care. Yet, a positive attitude toward pediatric palliative care prevails whenever respondents possess accurate information about such care. CONCLUSION(S): This comprehensive review of different perspectives on pediatric palliative care helped in identifying the literature gaps and provided direction for future research in this area. The need to enhance accurate knowledge and promote understanding especially in developing countries was emphasized. This review also highlighted factors that influence knowledge, attitudes and beliefs toward pediatric palliative care, and identified the need for validated tools for research.
Saad R; Huijer HAS; Noureddine S; Sailian SD
Annals of Palliative Medicine
2022
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<a href="http://doi.org/10.21037/apm-22-525" target="_blank" rel="noreferrer noopener">10.21037/apm-22-525</a>
The Dutch Multidisciplinary Clinical Practice Guideline for Pediatric Palliative Care
Netherlands; advance care planning; bereavement support; child; clinical practice; conference abstract; controlled study; female; human; male; palliative therapy; practice guideline; randomized controlled trial (topic); shared decision making; systematic review
Background and Aims: Pediatric palliative care is concerned with relief of suffering of all children with a life threatening disease and their families in all domains (physical, psychological, social and spiritual). This includes pediatric oncology patients. In 2013, the first Dutch multidisciplinary clinical practice guideline for pediatric palliative care was developed, providing recommendations on relief of symptoms, decision-making and organization of care. Evaluation of the guideline revealed a need for revision of the recommendations and inclusion of new recommendations on E-Poster Topics such as psychosocial and bereavement care, advance care planning and shared decision-making. The aim of this research is to improve provision of pediatric palliative care in the Netherlands by developing an updated version of the Dutch Pediatric Palliative Care guideline. Method(s): A multidisciplinary guideline panel reviewed literature on pediatric palliative care by systematic literature searches. The GRADE methodology was used to grade the evidence and to formulate recommendations. Recommendations were formulated and refined based on the evidence, clinical expertise, and patient values. For those E-Poster Topics where no evidence was available, recommendations were based on other guidelines, clinical expertise and patient values. Result(s): The updated systematic literature search identified 14 randomized controlled trials and 15 systematic reviews that prompted refinement of recommendations. For 27 out of 42 formulated clinical questions, no evidence was found. This revealed major gaps in knowledge on pediatric palliative care. Based on evidence (if available), clinical expertise and patient values, more than 100 recommendations on various E-Poster Topics in pediatric palliative care were generated. Conclusion(s): The updated guideline uses existing evidence and national expertise to develop transparent and easy-to-use recommendations to facilitate provision of high quality pediatric palliative care. The guideline promotes interdisciplinary collaboration and opens opportunities for international research into the identified knowledge gaps to further improve pediatric palliative care.
Van Teunenbroek K; Mulder R; Kremer L; Borggreve B; Verhagen AAE; Michiels E
Pediatric Blood and Cancer
2022
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<a href="http://doi.org/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener">10.1002/pbc.29952</a>
Reported Costs of Children with Medical Complexity-A Systematic Review
Children; Systematic review; Chronic disease; Medical complexity; Healthcare; Medical assistance; Medical costs
Examining reported costs for Children with Medical Complexity (CMCs) is essential because costing and resource utilization studies influence policy and operational decisions. Our objectives were to (1) examine how authors identified CMCs in administrative databases, (2) compare reported costs for the CMC population in different study settings, and (3) analyze author recommendations related to reported costs. We undertook a systematic search of the following databases: Medical Literature Analysis and Retrieval System Online, Excerpta Medica dataBase, Cumulative Index to Nursing and Allied Health Literature, and Cochrane Library with a focus on CMCs as a heterogeneous group. The most common method used n = 11 (41%) to identify the CMC population in administrative data was the Complex Chronic Conditions methodology. The majority of included studies reported on health care service costs n = 24 (89%). Only n = 3 (11%) of the studies included costs from the family perspective. Author recommendations included standardizing how costs are reported and including the family perspective when making care delivery or policy decisions. Health system administrators and policymakers must consider the limitations of reported costs when assessing local costing studies or comparing costs across jurisdictions.
Sidra M; Sebastianski M; Ohinmaa A; Rahman S
Journal of Child Health Care
2022
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<a href="http://doi.org/10.1177/13674935221109683" target="_blank" rel="noreferrer noopener">10.1177/13674935221109683</a>
Parental Perspective in Paediatric Palliative Care: A Systematic Review of Literature Using the PRISMA Method
Communication; Pediatric palliative care; Decision-making; Systematic review; Parental concerns; Perspective
Research in Parental Perspectives are pivotal in gaining understanding of parents' experiences, issues, concerns and attitude in pediatric palliative care which affects their decision making. However only a limited number of such studies have included the first-person perspective of Parents. The aim of this article is to understand the contribution of previous research on parental perspectives in pediatric palliative care through a systematic review of literature. Nine articles that met the inclusion criteria were accessed and seven key themes emerged; Psychological perspective, parental concerns, parental needs, parental attitude, spiritual perspective, cultural perspective and financial perspective. This review highlights requirement of more research into parental perspective if possible, covering all key aspects along with additional research in cultural perspective and development of validated tools, checklists and psychometric questionnaires for the assessment of these perspectives in various domains: spiritual, financial, psychological, cultural and social.
Srivastava R; Srivastava S
Indian Journal of Palliative Care
2022
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<a href="http://doi.org/10.25259/ijpc_37_2021" target="_blank" rel="noreferrer noopener">10.25259/ijpc_37_2021</a>
Paediatric advance care planning in life-limiting conditions: Scoping review of parent experiences
child; pediatrics; female; male; comparative study; Cinahl; human; quality of life; systematic review; review; advance care planning; Medline; decision making; conversation; care behavior; participatory research; sense of coherence
Background: Advance care planning is considered best practice for children and young people with life-limiting conditions but there is limited evidence how parents' perceive, understand and engage with the process. Aim(s): To understand parents' experience of advance care planning for a child or young person with a life-limiting condition. Design(s): Scoping review, theoretically informed by Family Sense of Coherence. Parents' experience was conceptualised in terms of meaningfulness, comprehensibility and manageability. Data sources: Electronic databases Medline, CINAHL and PyschINFO were searched for studies published between 1990 and 2021, using MeSH and broad-base terms. Result(s): 150 citations were identified and screened; 15 studies were included: qualitative (n=10), survey (n=3) and participatory research (n=2). Parents' experience of advance care planning was contextualised by their family values and beliefs, needs and goals and the day-to-day impact of caring for their child and family. They valued conversations, which helped them to maximise their child's quality of life and minimise their suffering. They preferred flexible, rather than definitive decisions about end-of-life care and treatment. Conclusion(s): Advance care planning which solely focuses on treatment decisions is at odds with parents' concerns about the current and future impact of illness on their child and family. Parents want advance care planning for their child to reflect what matters to them as a family. Future longitudinal and comparative studies are needed to understand the influence of advance care planning on parental decision-making over time and how social, cultural and contextual nuances influence parental experience. Copyright © Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.
Bennett HE; Duke S; Richardson A
BMJ Supportive and Palliative Care
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/bmjspcare-2022-003544" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2022-003544</a>
Parental support needs during pediatric resuscitation: A systematic review
Health services needs and demand; Parents; Pediatrics; Resuscitation; Social support; Systematic review
Background Resuscitation of a child is one of the most critical times that parents need support, and parental support is fundamental to providing family-centered care in high acuity settings. The aim of this systematic review was to appraise and synthesize studies conducted to examine the support needs of parents during resuscitation of their child from their own perspective. Method The PRISMA model guided the systematic literature search of Google Scholar, PubMed, Cochrane, Scopus, and Ovid for studies published until the end of 2020. Keywords used were: family support, family-centered care, family needs, resuscitation, CPR, children, neonatal, pediatric, family presence, family-witnessed, and parents. Results There were 787 articles located. After reviewing for relevancy, 21 articles met criteria and were included in this review. Findings indicate the needs of parents during resuscitation of their child include: Spiritual and cultural support; Communication with the child before and after resuscitation; Professional behavior from staff; Receiving information; Presence at resuscitation; Trust in the resuscitation team; and Having physical and mental needs met. Conclusion Parents have differing support needs when their child is resuscitated in the hospital, and meeting these needs is critical for providing family-centered care.
Ghavi A; Hassankhani H; Powers K; Arshadi-Bostanabad M; Namdar-Areshtanab H; Heidarzadeh M
International Emergency Nursing
2022
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<a href="http://doi.org/10.1016/j.ienj.2022.101173" target="_blank" rel="noreferrer noopener">10.1016/j.ienj.2022.101173</a>
Which children and young people are at higher risk of severe disease and death after hospitalisation with SARS-CoV-2 infection in children and young people: A systematic review and individual patient meta-analysis
Adolescent; Child; Chronic condition; Covid-19; Hospitalisation; Intensive care; Meta-analysis; Mortality; Risk factor; SARS-CoV-2; Severity; Systematic review
BACKGROUND: We aimed to describe pre-existing factors associated with severe disease, primarily admission to critical care, and death secondary to SARS-CoV-2 infection in hospitalised children and young people (CYP), within a systematic review and individual patient meta-analysis. METHODS: We searched Pubmed, European PMC, Medline and Embase for case series and cohort studies published between 1st January 2020 and 21st May 2021 which included all CYP admitted to hospital with ≥ 30 CYP with SARS-CoV-2 or ≥ 5 CYP with PIMS-TS or MIS-C. Eligible studies contained (1) details of age, sex, ethnicity or co-morbidities, and (2) an outcome which included admission to critical care, mechanical invasive ventilation, cardiovascular support, or death. Studies reporting outcomes in more restricted groupings of co-morbidities were eligible for narrative review. We used random effects meta-analyses for aggregate study-level data and multilevel mixed effect models for IPD data to examine risk factors (age, sex, comorbidities) associated with admission to critical care and death. Data shown are odds ratios and 95% confidence intervals (CI).PROSPERO: CRD42021235338. FINDINGS: 83 studies were included, 57 (21,549 patients) in the meta-analysis (of which 22 provided IPD) and 26 in the narrative synthesis. Most studies had an element of bias in their design or reporting. Sex was not associated with critical care or death. Compared with CYP aged 1-4 years (reference group), infants (aged <1 year) had increased odds of admission to critical care (OR 1.63 (95% CI 1.40-1.90)) and death (OR 2.08 (1.57-2.86)). Odds of death were increased amongst CYP over 10 years (10-14 years OR 2.15 (1.54-2.98); >14 years OR 2.15 (1.61-2.88)).The number of comorbid conditions was associated with increased odds of admission to critical care and death for COVID-19 in a step-wise fashion. Compared with CYP without comorbidity, odds ratios for critical care admission were: 1.49 (1.45-1.53) for 1 comorbidity; 2.58 (2.41-2.75) for 2 comorbidities; 2.97 (2.04-4.32) for ≥3 comorbidities. Corresponding odds ratios for death were: 2.15 (1.98-2.34) for 1 comorbidity; 4.63 (4.54-4.74) for 2 comorbidities and 4.98 (3.78-6.65) for ≥3 comorbidities. Odds of admission to critical care were increased for all co-morbidities apart from asthma (0.92 (0.91-0.94)) and malignancy (0.85 (0.17-4.21)) with an increased odds of death in all co-morbidities considered apart from asthma. Neurological and cardiac comorbidities were associated with the greatest increase in odds of severe disease or death. Obesity increased the odds of severe disease and death independently of other comorbidities. IPD analysis demonstrated that, compared to children without co-morbidity, the risk difference of admission to critical care was increased in those with 1 comorbidity by 3.61% (1.87-5.36); 2 comorbidities by 9.26% (4.87-13.65); ≥3 comorbidities 10.83% (4.39-17.28), and for death: 1 comorbidity 1.50% (0.00-3.10); 2 comorbidities 4.40% (-0.10-8.80) and ≥3 co-morbidities 4.70 (0.50-8.90). INTERPRETATION: Hospitalised CYP at greatest vulnerability of severe disease or death with SARS-CoV-2 infection are infants, teenagers, those with cardiac or neurological conditions, or 2 or more comorbid conditions, and those who are obese. These groups should be considered higher priority for vaccination and for protective shielding when appropriate. Whilst odds ratios were high, the absolute increase in risk for most comorbidities was small compared to children without underlying conditions. FUNDING: RH is in receipt of a fellowship from Kidney Research UK (grant no. TF_010_20171124). JW is in receipt of a Medical Research Council Fellowship (Grant No. MR/R00160X/1). LF is in receipt of funding from Martin House Children's Hospice (there is no specific grant number for this). RV is in receipt of a grant from the National Institute of Health Research to support this work (grant no NIHR202322). Funders had no role in study design, data collection, analysis, decision to publish or preparation of the manuscript.
Harwood R; Yan H; Talawila Da Camara N; Smith C; Ward J; Tudur-Smith C; Linney M; Clark M; Whittaker E; Saatci D; Davis PJ; Luyt K; Draper ES; Kenny SE; Fraser LK; Viner RM
EClinicalMedicine
2022
<a href="http://doi.org/10.1016/j.eclinm.2022.101287" target="_blank" rel="noreferrer noopener">10.1016/j.eclinm.2022.101287</a>
Pediatric palliative care and end-of-life: a systematic review of economic health analyses
Health economics; Hospice care; Palliative care; Pediatrics; Systematic review
OBJECTIVE: To perform a systematic review of the health economic evidence on the care of children and adolescents with complex clinical conditions, comparing groups included and not included (control group) in palliative care at the end of life. DATA SOURCE: The seven databases searched were PubMed, Embase, Web of Science, Cochrane Library, Virtual Health Library-Latin American and Caribbean Health Sciences Literature (VHL-LILACS), EBSCOhost, and Paediatric Economic Database Evaluation, following recommendations of the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) Statement, from January 1979 to November 2020. The review included studies of patients under 18 years of age with complex clinical conditions that compared a palliative care group with a control group. The economic outcomes analyzed were length and place of stay at the end of life (home, hospice, ward, intensive care unit, emergency room), diagnostic and therapeutic procedures performed, and health-related costs. The exclusion criteria were: studies without a matched control group, conference/congress abstracts, letters to the editor, editorials, comments, qualitative studies, narrative reviews, studies with ten or fewer participants in each group, articles published in languages other than English, Portuguese, or Spanish. DATA SYNTHESIS: Out of the 518 articles identified, 4 met the inclusion criteria. We found evidence of direct economic benefits, such as reduced health costs, indirect savings, and protection of patients from undergoing invasive procedures, surgeries, and costly therapies, which cause greater suffering at the end of life. Therefore, participating in a palliative care program saved financial and technological resources, besides increasing the frequency of deaths at home and improving the quality of life. CONCLUSIONS: Public and private policies to promote palliative care represent better efficiency when allocating available health care resources.
Lo DS; Hein N; Bulgareli JV
Revista Paulista de Pediatria
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/10.1590/1984-0462/2022/40/2021002" target="_blank" rel="noreferrer noopener">10.1590/1984-0462/2022/40/2021002</a>
Assessment of Long-term Psychological Outcomes after Pediatric Intensive Care Unit Admission: A Systematic Review and Meta-analysis
admission; Pediatric intensive care unit; PICU; psychological outcomes; Systematic Review
Importance: The pediatric intensive care unit (PICU) exposes children to stressful experiences with potential long-term psychological repercussions. However, current understanding of post-PICU psychological outcomes is incomplete. Objective(s): To systematically review and evaluate reported long-term psychological outcomes among children previously admitted to the PICU. Data Sources: A systematic search of the Cumulative Index to Nursing and Allied Health Literature, Embase, MEDLINE (PubMed), and PsycINFO was conducted from database inception to June 2021. Search terms included phrases related to intensive care (eg, intensive care units and critical care) and terms for psychological disorders (eg, posttraumatic stress disorder, depressive disorder, conduct disorder, and neurodevelopmental disorder) limited to the pediatric population. Study Selection: This systematic review and meta-analysis included randomized clinical trials and observational studies reporting psychological disorders among children younger than 18 years who were admitted to the PICU with follow-up for at least 3 months. Psychological disorders were defined using the Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition). Children were excluded if they were admitted to the PICU for primary brain conditions (eg, traumatic brain injury, meningoencephalitis, and brain tumors) or discharged to the home for palliative care. Data Extraction and Synthesis: Titles and abstracts were independently screened by 2 reviewers, with data extraction conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) reporting guideline. Data were pooled using a random-effects model during meta-analysis. Main Outcomes and Measures: Age-corrected IQ scores and long-term psychological outcomes measured by scales such as the Child Behavior Checklist (higher scores indicate more behavioral problems) among children admitted to the PICU. Result(s): Of 9193 records identified, 31 independent studies (5 randomized clinical trials and 26 observational studies) involving 7786 children (mean age, 7.3 years [95% CI, 6.2-8.4 years]; 4267 boys [54.8%]; race and ethnicity were not reported by all studies) admitted to the PICU were included. Overall, 1 of 19 children (5.3%) to 14 of 16 children (88.0%) previously admitted to the PICU were reported to have at least 1 psychological disorder. Studies that examined posttraumatic stress disorder reported that 6 of 60 children (10.0%) to 31 of 102 children (30.4%) met the diagnostic criteria for the disorder at 3 to 6 months of follow-up. Compared with healthy children, those admitted to the PICU had lower IQ scores at 1 to 2 years of follow-up (mean, 89.40 points [95% CI, 88.33-90.47 points] vs 100.70 points [95% CI, 99.43-101.97 points]; P <.001) and 3 to 5 years of follow-up (mean, 88.54 points [95% CI, 83.92-93.16 points] vs 103.18 [95% CI, 100.36-105.99 points]; P <.001) and greater total emotional and behavioral problems at 4 years of follow-up (mean, 51.69 points [95% CI, 50.37-53.01 points] vs 46.66 points [95% CI, 45.20-48.13 points]; P <.001). Conclusions and Relevance: This systematic review and meta-analysis found a high burden of psychological sequelae among children previously admitted to the PICU, suggesting that risk stratification and early interventions are needed for high-risk groups.. Copyright © 2022 American Medical Association. All rights reserved.
Ko MSM; Poh PF; Heng KYC; Sultana R; Murphy B; Ng RWL; Lee JH
JAMA Pediatrics
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1001/jamapediatrics.2021.5767" target="_blank" rel="noreferrer noopener">10.1001/jamapediatrics.2021.5767</a>
Pediatric End-of-Life Care in Rural America: A Systematic Review
systematic review; pediatric palliative care; pediatric end-of-life; pediatric hospice; rural health care; rural hospice
BACKGROUND: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural areas. OBJECTIVE: The purpose of this study was to comprehensively review and summarize the evidence regarding end-of-life care for children living in rural areas, identify key findings and gaps in the literature, and make recommendations for future research. METHODS: A systematic review was conducted from 2011 to 2021 using MEDLINE and CINAHL databases. RESULTS: Nine studies met inclusion criteria. Key themes from the literature included: barriers, facilitators, and needs. Three articles identified barriers to end-of-life care for children in rural communities, which included access to end-of-life care and clinicians trained to provide pediatric care. Three studies identified and evaluated the facilitators of end-of-life care for rural children. The articles identified technology and additional training as facilitators. Four studies reported on the needs of rural children for end-of-life care with serious illness. CONCLUSIONS: We found major barriers and unmet needs in the delivery of rural pediatric end-of-life care. A few facilitators in delivery of this type of care were explored. Overall research in this area was sparse. Future studies should focus on understanding the complexities associated with delivery of pediatric end-of-life care in rural areas.
Stone W; Keim-Malpass J; Cozad MJ; Fornehed MLC; Lindley LC
American Journal of Hospice and 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/10.1177/10499091211064202" target="_blank" rel="noreferrer noopener">10.1177/10499091211064202</a>
Transition of children with life-limiting conditions to adult care and healthcare use: a systematic review
child; life-limiting condition; systematic review; Transition to adult care
Background: Improved survival has led to increasing numbers of children with life-limiting conditions transitioning to adult healthcare services. There are concerns that transition may lead to a reduction in care quality and increases in emergency care. This review explores evidence for differences in health or social care use post- versus pre-transition to adult services.
Jarvis SW; Roberts D; Flemming K; Richardson G; Fraser LK
Pediatric Research
1120
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/10.1038/s41390-021-01396-8" target="_blank" rel="noreferrer noopener">10.1038/s41390-021-01396-8</a>
Pain assessment tools in paediatric palliative care: A systematic review of psychometric properties and recommendations for clinical practice
paediatrics; pain assessment; Pain measurement; palliative care; systematic review
BACKGROUND: Assessing pain in infants, children and young people with life-limiting conditions remains a challenge due to diverse patient conditions, types of pain and often a reduced ability or inability of patients to communicate verbally. AIM: To systematically identify pain assessment tools that are currently used in paediatric palliative care and examine their psychometric properties and feasibility and make recommendations for clinical practice. DESIGN: A systematic literature review and evaluation of psychometric properties of pain assessment tools of original peer-reviewed research published from inception of data sources to April 2021. DATA SOURCES: PsycINFO via ProQuest, Web of Science Core, Medline via Ovid, EMBASE, BIOSIS and CINAHL were searched from inception to April 2021. Hand searches of reference lists of included studies and relevant reviews were performed. RESULTS: From 1168 articles identified, 201 papers were selected for full-text assessment. Thirty-four articles met the eligibility criteria and we examined the psychometric properties of 22 pain assessment tools. Overall, the Faces Pain Scale-Revised (FPS-R) had high cross-cultural validity, construct validity (hypothesis testing) and responsiveness; while the Faces, Legs, Activity, Cry and Consolability (FLACC) scale and Paediatric Pain Profile (PPP) had high internal consistency, criterion validity, reliability and responsiveness. The number of studies per psychometric property of each pain assessment tool was limited and the methodological quality of included studies was low. CONCLUSION: Balancing aspects of feasibility and psychometric properties, the FPS-R is recommended for self-assessment, and the FLACC scale/FLACC Revised and PPP are the recommended observational tools in their respective age groups.
Chan AY; Ge M; Harrop E; Johnson M; Oulton K; Skene SS; Wong IC; Jamieson L; Howard RF; Liossi C
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/10.1177/02692163211049309" target="_blank" rel="noreferrer noopener">10.1177/02692163211049309</a>
Effectiveness of virtual reality interventions for adolescent patients in hospital settings: Systematic review
adolescents; hospital; pain; anxiety; Systematic review; virtual reality
Background: Given the high level of interest and increasing familiarity with virtual reality among adolescents, there is great potential to use virtual reality to address adolescents' unique health care delivery needs while in hospital. While there have been reviews on the use of virtual reality for specific health conditions and procedures, none to date have reviewed the full scope of virtual reality hospital interventions for adolescents who are often combined with children as a homogenous group, despite the fact that adolescents experience virtual environments different from children. Objective(s): The aim of this review was to systematically identify available evidence regarding the use of virtual reality interventions for adolescent patients in hospital settings to evaluate effectiveness, suitability, and safety and identify opportunities for future research. Method(s): PubMed, PsycINFO, Medline, and Scopus databases were searched using keywords and phrases. Retrieved abstracts (n=1525) were double screened, yielding 276 articles for full-text screening. Of these, 8 articles met inclusion criteria. Data were extracted to a standardized coding sheet, and a narrative synthesis was performed due to the heterogeneity of the studies. Result(s): Four RCTs and 4 single-case reports were identified for inclusion, all of which aimed to reduce pain or anxiety. The scenarios targeted were burn pain, venipuncture, chemotherapy, preoperative anxiety, and palliative care. Three out of 4 RCTs found significant reductions in pain or anxiety outcomes measures when using virtual reality compared to standard care or other distraction techniques; however, only 1 study combined self-reported experiences of pain or anxiety with any physiological measures. Single-case reports relied primarily upon qualitative feedback, with patients reporting reduced pain or anxiety and a preference for virtual reality to no virtual reality. Conclusion(s): Virtual reality can provide a safe and engaging way to reduce pain and anxiety in adolescents while in hospital, particularly when virtual reality software is highly immersive and specifically designed for therapeutic purposes. As VR becomes more accessible and affordable for use in hospitals, larger and more diverse studies that capitalize on adolescents' interest in and aptitude for virtual reality, and on the full range of capabilities of this emerging technology, are needed to build on these promising results. Copyright © 2021 Journal of Medical Internet Research. All rights reserved.
Ridout B; Kelson J; Campbell A; Steinbeck K
Journal of Medical Internet Research
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/10.2196/24967" target="_blank" rel="noreferrer noopener">10.2196/24967</a>
Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis
children; systematic review; life limiting conditions; paediatrics; fathers
BACKGROUND: Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the majority of this research is from mothers' perspectives, meaning that fathers' experiences are not well understood. OBJECTIVES: To identify and synthesise findings from existing qualitative studies that have explored the experiences of fathers of children with a life-limiting condition. METHODS: A systematic review of qualitative research was conducted using thematic synthesis. Searches were conducted in MEDLINE, CINAHL, EMBASE, PsycINFO and Social Science Citation Index. RESULTS: Findings from 30 studies were included, representing the experiences of 576 fathers of children with a range of diagnoses including cancer, cystic fibrosis, genetic and neurological conditions. Themes detailed fathers' experiences of uncertainty and shock around the time of their child's diagnosis, their accounts of a 'new normal', difficulties in discussing their emotions, forming relationships with and seeking support from professionals and working fathers' role conflicts. They discussed the life-changing nature of their child's diagnosis, an event that affected all aspects of their lives from everyday activities, to their relationships, spirituality, values and ambitions. CONCLUSIONS: Fathers experience many difficulties in response to their child's diagnosis and ongoing treatment. Findings highlight the need for healthcare professionals to recognise individual family dynamics and the evolving role of the father. Fathers' responses are not widely understood, and research that directly addresses their own well-being is warranted.
Fisher V; Fraser L; Taylor J
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-2021-003019" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003019</a>
The impact of digital health interventions on the psychological outcomes of patients and families receiving paediatric palliative care: A systematic review and narrative synthesis
palliative care; systematic review; psychosocial outcomes; paediatric; Digital health interventions
BACKGROUND: Digital health interventions are becoming increasingly important and may be particularly relevant for paediatric palliative care. In line with the aims of palliative care, digital health interventions should aim to maintain, if not improve, psychological wellbeing. However, the extent to which the psychological outcomes of digital health interventions are assessed is currently unknown. AIM: To identify and synthesise the literature exploring the impact of all digital health interventions on the psychological outcomes of patients and families receiving paediatric palliative care. DESIGN: Systematic review and narrative synthesis. DATA SOURCES: MEDLINE, EMBASE, Health Management Information Consortium, PsycINFO, Cumulative Index to Nursing and Allied Health Literature and the Midwives Information & Resource Service were searched on the 27th July 2020, in addition to the first five pages of Google Scholar. To be included in the review, papers must have contained: quantitative or qualitative data on psychosocial outcomes, data from patients aged 0-18 receiving palliative care or their families, a digital health intervention, and been written in English. RESULTS: Three studies were included in the review. All looked at the psychological impact of telehealth interventions. Papers demonstrated fair or good quality reporting but had small sample sizes and varied designs. CONCLUSIONS: Despite the design and development of digital health interventions that span the technological landscape, little research has assessed their psychosocial impact in the paediatric palliative care community. Whilst the evidence base around the role of these interventions continues to grow, their impact on children and their families must not be overlooked.
Archer S; Cheung NHY; Williams I; Darzi A
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/10.1177/02692163211026523" target="_blank" rel="noreferrer noopener">10.1177/02692163211026523</a>
Grief and Bereavement in Fathers After the Death of a Child: A Systematic Review
systematic review; hospice and palliative medicine; bereavement; father grief
CONTEXT: The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the experiences of fathers remains underexplored. OBJECTIVE: We systematically reviewed the literature to characterize the grief and bereavement experiences of fathers after the death of a child. DATA SOURCES: We searched Medline, PsycInfo, Embase, and Cumulative Index to Nursing and Allied Health Literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. STUDY SELECTION: Inclusion criteria encompassed English language articles published between 2007 and 2019 that evaluated the grief and bereavement experiences of fathers after the death of their child. We excluded studies describing paternal bereavement after the death of a child aged older than 21 years, stillbirth, miscarriage, or studies that did not specify age of death. DATA EXTRACTION: Extracted domains included study design, demographics, findings, and quality assessment. RESULTS: We screened 1848 deduplicated titles and abstracts and 139 full articles, yielding 21 articles for inclusion in this analysis. Fathers often avoided discussing their grief with others, returned to work earlier, and used goal-oriented tasks as coping strategies. Intense grief reactions and posttraumatic psychological sequelae diminished over time in mothers yet persisted in fathers. LIMITATIONS: Included studies were primarily descriptive in nature, without ability to ascertain causality. Limited paternal data exists in the literature compared with maternal data. CONCLUSIONS: Despite evolving gender roles, many fathers navigate loss through stoicism, self-isolation, and hard work. For some fathers, these coping mechanisms may be inadequate for navigating grief.
McNeil MJ; Baker JN; Snyder I; Rosenberg AR; Kaye EC
Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/peds.2020-040386" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-040386</a>
Impact of palliative care on end-of-life care and place of death in children, adolescents, and young adults with life-limiting conditions: A systematic review
Adolescent; Child; Systematic review; Palliative care; impact; Young adult
OBJECTIVE: To determine the impact of palliative care (PC) on end-of-life (EoL) care and the place of death (PoD) in children, adolescents, and young adults with life-limiting conditions. METHOD(S): Eight online databases (PubMed, Medline, EMBASE, Cochrane Library, CINAHL, Airiti, GARUDA Garba Rujukan Digital, and OpenGrey) from 2010 to February 5, 2020 were searched for studies investigating EoL care and the PoD for pediatric patients receiving and not receiving PC. RESULT(S): Of the 6,468 citations identified, 14 cohort studies and one case series were included. An evidence base of mainly adequate- and strong-quality studies shows that inpatient hospital PC, either with or without the provision of home and community PC, was found to be associated with a decrease in intensive care use and high-intensity EoL care. Conflicting evidence was found for the association between PC and hospital admissions, length of stay in hospital, resuscitation at the time of death, and the proportion of hospital and home deaths. SIGNIFICANCE OF RESULTS: Current evidence suggests that specialist, multidisciplinary involvement, and continuity of PC are required to reduce the intensity of EoL care. Careful attention should be paid to the need for a longer length of stay in a medical setting late in life, and earlier EoL care discussion should take place with patients/caregivers, especially in regard to attempting resuscitation in toddlers, adolescents, and the young adult population. A lack of robust evidence has identified a gap in rigorous multisite prospective studies utilizing data collection.
Lin SC; Huang MC; Yasmara D; Wuu HL
Palliative & Supportive 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/10.1017/S1478951520001455" target="_blank" rel="noreferrer noopener">10.1017/S1478951520001455</a>
The Phenomenon of Bereaved Parenting: An Integrative Review of Literature
Emotions; Psychology; Communication; Bereavement; Survivors; Conflict (Psychology); Human; Coping; Parenting; Grief; Social Work; Parents -- Psychosocial Factors; Systematic Review; Parental Role; Family Role; Science
Bereaved parenting, a role that entails parenting surviving children after experiencing the death of a child, is a unique but understudied phenomenon within bereavement research. Not much is known about the impact of a child's death on this crucial familial role. An integrative review of literature of 20 studies across psychology, nursing, communications, social work, and family sciences was undertaken to determine the current state of science regarding bereaved parenting. Results revealed three influential contexts: the general context of parental grief and bereavement, described as traumatic and life-changing experiences; the personal context of the resulting parental changes and coping strategies; and the relational context of the subsequent parenting of surviving children, an experience characterized by periodic conflict between personal and children's needs, emotional fluctuations, challenges with levels of protectiveness and control, and a heightened sense of responsibility within the parental role. Discussion of results and implications for research are presented.
Haylett WJ; Scott Tilley D
Omega: Journal of Death & Dying
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/10.1177/0030222818819350" target="_blank" rel="noreferrer noopener">10.1177/0030222818819350</a>
Supporting the Decision Making of Children With Cancer: A Meta-synthesis
children; cancer; systematic review; decision making
Background: Recently, awareness of children's decision making has increased in an effort to enhance palliative care. However, the conceptual framework for decision making among children with cancer remains unclear. Aims: We clarified the decision-making process of children with cancer regarding their care, treatment, and support from family and health care professionals, and identified their needs and preferences. Design: We used metaethnography to conduct a metasynthesis of relevant studies. Data sources: We searched PubMed, EMBASE, PsycINFO, MEDLINE, and CINAHL. This report was prepared in accordance with the PRISMA statement. Results: Of the 7,237 retrieved studies, 27 met our inclusion criteria. Four themes emerged that reflected the decision-making process of children with cancer: (a) facing changes brought about by a health threat, (b) preparing for action, (c) asserting one's choice, and (d) internal and external influences. Conclusion: Children with cancer initially undergo a decision-making process. Respecting children's preferences, values, and emotions may help build trusting relationships and promote their decision-making capability. Future research should focus on children's emotions, cognition, development, and interactions with parents and health care professionals.
Yamaji N; Suto M; Takemoto Y; Suzuki D; Lopes K D S; Ota E
Journal of Pediatric Oncology Nursing
2020
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<a href="http://doi.org/10.1177/1043454220919711" target="_blank" rel="noreferrer noopener">10.1177/1043454220919711</a>
Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review
palliative care; child; adolescent; hospice care; terminal care; neoplasms; systematic review
Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim(s): To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access. Design(s): A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874). Data sources: Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000-2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool. Result(s): An evidence base of mainly low- and moderate-quality studies (n = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children's symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services. Conclusion(s): Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children's views, and research is needed to determine whether specialist input improves quality of life. Copyright © The Author(s) 2020.
Taylor J; Booth A; Beresford B; Phillips B; Wright K; Fraser L
Palliative Medicine
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/10.1177/0269216320908490" target="_blank" rel="noreferrer noopener">10.1177/0269216320908490</a>