Physicians' attitudes and experiences about withholding/withdrawing life-sustaining treatments in pediatrics: a systematic review of quantitative evidence
Pediatric; Decision-making; Attitudes; Experiences; Physician; Withhold/withdraw life-sustaining treatments
BACKGROUND: One of the most important and ethically challenging decisions made for children with life-limiting conditions is withholding/withdrawing life-sustaining treatments (LST). As important (co-)decision-makers in this process, physicians are expected to have deeply and broadly developed views. However, their attitudes and experiences in this area remain difficult to understand because of the diversity of the studies. Hence, the aim of this paper is to describe physicians' attitudes and experiences about withholding/withdrawing LST in pediatrics and to identify the influencing factors. METHODS: We systematically searched Pubmed, Cinahl®, Embase®, Scopus®, and Web of Science™ in early 2021 and updated the search results in late 2021. Eligible articles were published in English, reported on investigations of physicians' attitudes and experiences about withholding/withdrawing LST for children, and were quantitative. RESULTS: In 23 included articles, overall, physicians stated that withholding/withdrawing LST can be ethically legitimate for children with life-limiting conditions. Physicians tended to follow parents' and parents-patient's wishes about withholding/withdrawing or continuing LST when they specified treatment preferences. Although most physicians agreed to share decision-making with parents and/or children, they nonetheless reported experiencing both negative and positive feelings during the decision-making process. Moderating factors were identified, including barriers to and facilitators of withholding/withdrawing LST. In general, there was only a limited number of quantitative studies to support the hypothesis that some factors can influence physicians' attitudes and experiences toward LST. CONCLUSION: Overall, physicians agreed to withhold/withdraw LST in dying patients, followed parent-patients' wishes, and involved them in decision-making. Barriers and facilitators relevant to the decision-making regarding withholding/withdrawing LST were identified. Future studies should explore children's involvement in decision-making and consider barriers that hinder implementation of decisions about withholding/withdrawing LST.
Zhong Y; Cavolo A; Labarque V; Gastmans C
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/s12904-023-01260-y" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01260-y</a>
Parental experiences in end-of-life decision-making in allogeneic pediatric stem cell transplantation: "Have I been a good parent?"
decision-making; end-of-life; experiences; hematopoietic stem cell transplantation; parental; pediatric
Background: In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This demands a fast transition for parents. Therefore, an understanding of the parents' perspective on decision-making in such a complex situation is needed. This study aims to gain insight in parental experiences in EOL decision-making in allogeneic pediatric HSCT.Methods: A qualitative descriptive study was performed among parents of eight families. Data were thematically analyzed.Results: All parents were aware of their child's deterioration. Six families were confronted with a rapid deterioration, while two families experienced a gradual realization that their child would not survive. Parental EOL decision-making in pediatric HSCT shows a reflective perspective on the meaning of parenthood in EOL decision-making. Two central themes were identified: "survival-oriented decision-making" and "struggling with doubts in hindsight." Six subthemes within the first theme described the parents' goal of doing everything to achieve survival.Discussion: Parents experienced EOL decision-making mainly as a process guided by health care professionals (HCPs) based on the child's condition and treatment possibilities. The decision-making is characterized by following opportunities and focusing on hope for cure. In hindsight parents experienced doubts about treatment steps and their child's suffering. HCPs can strengthen the parental role by an early integration of palliative care, providing timely support to parents in the process of imminent loss. Advance care planning can be used to support communication processes, defining preferences for future care.
Mekelenkamp H; Lankester AC; Bierings MB; Smiers FJW; de Vries MC; Kars MC; de Vries MC
Pediatric Blood and Cancer
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/10.1002/pbc.28229" target="_blank" rel="noreferrer noopener">10.1002/pbc.28229</a>
Attitudes and Experiences Towards Death of Healthcare Professionals Working in Neonatal Intensive Care Units
death; neonatal intensive care units; experiences; healthcare professionals; attitudes
BACKGROUND: Death is an integral part of neonatal intensive care units' (NICUs) environment and little it is known about NICU's staff death concepts. AIM: To investigate attitudes and experiences towards death of healthcare professionals (HPs) working in NICUs. DESIGN: Totally 131 participants from six hospitals were included in the study. Research instruments were a questionnaire designed by the authors and the scale Death Attitude Profile-Revised. RESULTS: Gender, marital and educational status, frequent contact with end of life neonates and provision of neonatal end of life care during the research period correlated significantly with dimensions of DAP-R. Impact of NICU neonatal deaths on personal life correlated negatively with fear of death and positively with escape acceptance. CONCLUSION: Evaluating the interrelationships among personal characteristics, attitudes and experiences towards death among NICU HPs may increase our understanding concerning working with dying neonates and provide direction for educational intervention and continuing professional support.
Metallinou D; Bardo S; Kitsonidou I; Sotiropoulou N
Omega
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/10.1177/00302228211048667" target="_blank" rel="noreferrer noopener">10.1177/00302228211048667</a>
Hearing the voices of children diagnosed with a life-threatening or life-limiting illness and their parents' accounts in a palliative care setting: A qualitative study
Children; palliative care; qualitative; experiences; life-limiting; life-threatening
BACKGROUND: Exploring children's experiences of a life-threatening or life-limiting diagnosis is essential in offering appropriate care for them. There have been few studies examining these and they are often from the parent's perspective. Even if adults are frequently unwilling to share information with children, they become aware of their diagnosis and prognosis. The theory of awareness contexts provided a theoretical framework through which it can be understood what children knew about their condition. AIM: To advance the understanding of the experiences of children with a life-threatening or life-limiting condition. DESIGN: A qualitative study using dyadic interviews and thematic analysis. SETTING/PARTICIPANTS: Ten children between 14 to 17 years old with a life-threatening or life-limiting illness who were supported by a palliative care service in Romania. Interviews were also undertaken with their mothers. RESULTS: Interview data demonstrated that there was a gap in the child's experience and understanding of their condition compared to their parents. The data produced six major themes: awareness of the illness, death and dying, the spiritual response to illness, the emotional response to illness, striving for normality and independence and coping strategies. The study showed that children can read subtle cues or they may talk with other children to learn about their illness when information is not openly available to them. CONCLUSIONS: Children in the study often know more about their condition than their parents realised. Using this understanding, healthcare professionals can advise parents and children about how to communicate with one another which would enable the children to give voice to their thoughts, emotions and experiences.
Ciobanu E; Preston N
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/10.1177/02692163211000238" target="_blank" rel="noreferrer noopener">10.1177/02692163211000238</a>
Experiences of new nurses dealing with death in a paediatric setting: A descriptive qualitative study
death; experiences; novice nurse; nurses; paediatric
AIMS: To explore and describe the experiences, challenges and coping strategies of new nurses dealing with paediatric death in a clinical setting. DESIGN: A descriptive qualitative study design was used. METHODS: Semi-structured interviews were conducted to explore the experiences of 12 new paediatric nurses from a tertiary public hospital in Singapore. Data were collected from September 2019-December 2019. A thematic analysis was performed for data analysis. RESULTS: Four themes were generated: (a) a spectrum of emotions; (b) the 'blame' game; (c) getting through the grief; and (d) new nurses' wish list. The new nurses tended to be emotionally affected by their first death experience. They felt anxious and personally responsible for the death but eventually controlled their emotions. Colleagues, religion and self-actualization were key in overcoming grief. CONCLUSION: The experiences nurses go through at the early stages of their profession shape future workplace attitudes. Additional training and support should be provided to new nurses to build their confidence in managing end-of-life care. Training should include cultural awareness and communication skills to equip nurses with the necessary skills. IMPACT: This research will have an impact on institutions, which develop culturally congruent training and support platforms that prepare new nurses for nursing practice. This research will drive future investigations on the long-term effects of paediatric death on new nurses.
Chew YJM; Ang SLL; Shorey S
Journal of Advanced Nursing
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/jan.14602" target="_blank" rel="noreferrer noopener">10.1111/jan.14602</a>
Parental experiences in end-of-life decision-making in allogeneic pediatric stem cell transplantation: "Have I been a good parent?"
decision-making; end-of-life; experiences; hematopoietic stem cell transplantation; parental; pediatric
Background: In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This demands a fast transition for parents. Therefore, an understanding of the parents' perspective on decision-making in such a complex situation is needed. This study aims to gain insight in parental experiences in EOL decision-making in allogeneic pediatric HSCT.Methods: A qualitative descriptive study was performed among parents of eight families. Data were thematically analyzed.Results: All parents were aware of their child's deterioration. Six families were confronted with a rapid deterioration, while two families experienced a gradual realization that their child would not survive. Parental EOL decision-making in pediatric HSCT shows a reflective perspective on the meaning of parenthood in EOL decision-making. Two central themes were identified: "survival-oriented decision-making" and "struggling with doubts in hindsight." Six subthemes within the first theme described the parents' goal of doing everything to achieve survival.Discussion: Parents experienced EOL decision-making mainly as a process guided by health care professionals (HCPs) based on the child's condition and treatment possibilities. The decision-making is characterized by following opportunities and focusing on hope for cure. In hindsight parents experienced doubts about treatment steps and their child's suffering. HCPs can strengthen the parental role by an early integration of palliative care, providing timely support to parents in the process of imminent loss. Advance care planning can be used to support communication processes, defining preferences for future care.
Mekelenkamp H; Lankester A C; Bierings M B; Smiers F J W; Vries M C; Kars M C; de Vries M C
Pediatric Blood & Cancer
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/10.1002/pbc.28229" target="_blank" rel="noreferrer noopener">10.1002/pbc.28229</a>
Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration
adaptation; Adaptation; Adolescent; Anthropology; Brain Neoplasms/*psychology; cancer; Child; children; coping; Cultural; enduring; experiences; Female; health; Humans; illness and disease; Infant; lived experience; Male; meta-ethnogrpahy; metasynthesis; Method: interpretive methods; Parents/*psychology; Preschool; Psychological; psychosocial aspects; Qualitative Research; qualitative. Geographic: Taiwan; quality of life; Quality of Life/*psychology; resilience; Resilience; resistance; survivorship; Young Adult
The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand the term has not been adequately investigated. This study aimed to review the current qualitative research on CYP, parents' and clinicians' concepts of QoL for CYP with BTs using meta-ethnography. Six studies were found, which reflected on the concept of QoL in CYP with BTs; all explored the CYP's perspective and one study also touched upon parents' concept. A conceptual model is presented. Normalcy (a "new normal") was found to be the key element in the concept. This study calls for a conception of QoL, which foregrounds normalcy over the more common health-related quality of life (HRQoL) and the need to understand the concept from all perspectives and accommodate change over time.
Beecham E; Langner R; Hargrave D; Bluebond-Langner M
Qualitative Health Research
2019
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<a href="http://doi.org/10.1177/1049732318786484" target="_blank" rel="noreferrer noopener">10.1177/1049732318786484</a>
Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study
article; child; female; human; male; palliative therapy; controlled study; qualitative research; thematic analysis; Coping; Paediatrics; pediatrics; clinical article; coping behavior; decision making; interview; child care; anxiety; Caregiving; child parent relation; Experiences; grief; Palliative care; Parents; perception; tension; uncertainty
Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals' support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s). Conclusion(s): Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies.What is Known:* In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child's symptoms, a life worth living and a family balance.What is New:* Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship.* Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes.* To provide tailored support, professionals need to understand parents' perceptions, relationship with their child and coping strategies. Copyright © 2019, The Author(s).
Verberne L M; Kars M C; Schouten-van Meeteren A Y N; van den Bergh E M M; Bosman D K; Colenbrander D A; Grootenhuis M A; van Delden J J M
European Journal of Pediatrics.
2019
<a href="http://doi.org/10.1007/s00431-019-03393-w" target="_blank" rel="noreferrer noopener">10.1007/s00431-019-03393-w</a>
The experiences and needs of healthcare professionals facing perinatal death: A scoping review
Health Services Needs and Demand; Stillbirth; experiences; Female; healthcare professionals; Health Personnel/ psychology; Humans; Maternal Health Services/ manpower; Maternity care; Needs; Perinatal Death; Pregnancy; Scoping review
BACKGROUND: Globally, perinatal death is on a decline. However, its impact on the healthcare profession is huge. The existing literature focuses on examining perinatal death from parents' perspectives and patient death from the perspectives of nurses and a few doctors in critical care, oncology, and neonatology in the West. Due to the unique setting of maternity units where death is not routinely anticipated, as well as distinctive socio-cultural views surrounding death, there is a need to comprehensively review literature examining the impact of perinatal death on the perspectives of healthcare professionals working in maternity units. OBJECTIVES: To examine available literature on the needs and experiences of healthcare professionals working in maternity units who have experienced perinatal death. DESIGN: A scoping review of published and unpublished data. DATA SOURCES: A systematic literature search from 1st January 1996 to 5th August 2016 was made in the following databases: PubMed, CINAHL, Embase, PsycINFO, ScienceDirect, and Web of Science. Cochrane Library, Joanna Briggs Institute Library of Systematic Reviews, York Centre for Reviews and Dissemination, Open Grey, ProQuest Dissertation and Theses, and Mednar were reviewed for grey literature. A hand search of the reference lists of the included papers was performed. REVIEW METHODS: Based on the pre-set inclusion criteria, 1519 articles were screened for their titles and abstracts. Eighty-five full-text papers were reviewed, resulting in 30 papers included for this review. The data were extracted and cross-checked between the reviewers. Any discrepancy between the authors' views would be discussed with a third reviewer until consensus was reached. Thematic analysis was used to categorise the results into themes. RESULTS: Two major themes emerged from the review: the experiences and needs of healthcare professionals. Six subthemes emerged from the experiences of healthcare professionals: 1) psychological impact, 2) physical impact, 3) positive feelings, 4) coping strategies, 5) personal factors influencing the experience, and 6) cultural factors influencing the experience. Three subthemes including 1) social support, 2) training and education, and 3) other needs explained the needs of healthcare professionals. Studies focusing on the experiences and needs of physicians were scarce. CONCLUSIONS: Perinatal death has a profound impact on the psychological and physical wellbeing of healthcare professionals. They have unmet needs that need to be addressed. Though they use internal and external resources to combat their stress, institutional support acknowledging their stress and their needs is essential. Culturally-sensitive education and training are needed to provide support to these professionals.
Shorey S; Andre B; Lopez V
International Journal Of Nursing Studies
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.ijnurstu.2016.12.007" target="_blank" rel="noreferrer">10.1016/j.ijnurstu.2016.12.007</a>
A survey of the experiences of families with bereavement support services following a perinatal loss
Bereavement Services; Experiences; Loss; Mothers; Perinatal Death; Survey
Background: Although there are many studies that explore complicated grief, no studies have examined the impact of bereavement support services on the progression to complicated grief. The aims of our study were to describe the types of bereavement services utilised by families who have experienced a perinatal loss, and explore the impact of these services on the families’ bereavement journey.
Methods: Women who experienced a perinatal loss were sent a survey consisting of the modified Perinatal Post Traumatic Stress Disorder (PTSD) questionnaire, items addressing use of bereavement services, and the Inventory of Complicated Grief. Respondents also provided free-text comments.
Results: Forty-seven women were included in the study (34% response rate); 75% had a perinatal PTSD score which indicated the need for support from mental health services and 75% accessed services. Forty-three percent met the criteria for complicated grief. Women whose PTSD scores were in the highest quartile were most likely to access services; 45% of surveyed women used SIDS and Kids of the Australian Capital Territory (SKACT) accessing counselling (90%), support groups (50%), playgroups (15%) and the helpline (10%). Fifty-seven percent of women surveyed accessed non-SKACT services and predominantly used psychologists (66%) and general practitioners (30%). Requests were made for grief training of hospital staff, and for referral to bereavement services to be offered after hospital discharge.
Conclusions: Following a perinatal loss, a high proportion of women had high PTSD scores and complicated grief despite utilising local bereavement services. Our findings support the continuation of current support services with modifications that may potentially improve recovery following a perinatal loss.
Inati V; Matic M; Phillips C; Maconachie N; Vanderhook F; Kent AL
The Australian & New Zealand Journal Of Obstetrics & Gynaecology
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://onlinelibrary.wiley.com/doi/10.1111/ajo.12661/abstract" target="_blank" rel="noreferrer">10.1111/ajo.12661</a>
Quality Indicators And Parental Satisfaction With Perinatal Palliative Care In The Intrapartum Setting After Diagnosis Of A Life-limiting Fetal Condition
Perinatal; State; Model; Program; Decisions; Prenatal-diagnosis; Nursing; Fetal Diagnosis; Palliative Care; Quality Indicators; Experiences; Measurement; Medical Care; Diagnosis; Health Aspects; Palliative Treatment; Fetal Diseases; Analysis; Quality Management; Pregnancy; Medical Diagnosis; Palliative Care; Parents & Parenting; Perception; Quality Of Care
Measurement of quality indicators (QIs) in perinatal palliative care has not been addressed. Parents who chose to continue pregnancy after a diagnosis of a life-limiting fetal condition described perceptions of quality care and their satisfaction with care. This research identified which QIs explained parental satisfaction. High QI scores are associated with parental satisfaction. Parents who were satisfied reported 2.9 times the odds that their baby was treated with dignity and respect and 3.4 times the odds their medical care was addressed. This research is a first step in developing a robust measure of QIs in perinatal palliative care.
Wool C; Black BP; Woods AB
Advances In Nursing Science
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1097/ANS.0000000000000147
Lived Experiences Of Parents Caring For A Child With A Life-limiting Condition In Australia: A Qualitative Study.
Illness; Pediatric Palliative Care; Impact; Services; Cancer; Families; Support; Of-life; Public; Public Environmental & Occupational Health; Caregivers; Medicine General & Internal; Health Care Sciences & Services; Threatening Conditions
Pediatric Palliative Care; Caregiver; Experiences; Life-limiting Conditions; Qualitative
BACKGROUND:
Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports.
AIM:
To provide an in-depth exploration of the prevalent lived experiences of parents who are currently providing care for a child with a life-limiting condition in Australia.
DESIGN:
Cross-sectional, prospective, qualitative study guided by an advisory group and reported according to the consolidated criteria for reporting qualitative studies. Transcripts were subjected to a thematic analysis, underpinned by an interpretative phenomenological framework.
SETTING/PARTICIPANTS:
Purposively sampled parents (n = 14) recruited from a statewide paediatric hospice who self-identified as a 'primary caregiver' for one or more children and/or adolescents (⩽18 years) with a life-limiting condition.
RESULTS:
Four key themes represented the prevalent experiences of parents: (1) trapped inside the house, (2) the protector, (3) living with the shadow and (4) travelling a different pathway. They describe parents' physical and social isolation, exclusion from the workforce, pervasive grief and associated impacts to their health and well-being. Limited professional and diminished social supports resulted in full ownership of care responsibility. Yet, parents embraced their role as 'protector', reporting acquired meaning and purpose.
CONCLUSION:
This study builds upon the growing body of evidence available in paediatric palliative care internationally. The key themes highlight the substantial demand for both physical and emotional support beyond what is currently offered and call for the implementation of carefully planned support services and other societal initiatives which seek to alleviate the broad health impacts to caregivers.
Collins A; Hennessy-Anderson N; Hosking S; Hynson J; Remedios C; Thomas K
Journal Of Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1177/0269216316634245
Living With Dying In The Pediatric Intensive Care Unit: A Nursing Perspective
Child; Nurses; Nursing; Death; Compassion Fatigue; Grief; Professionals; Critical Care Medicine; Experiences; Pediatric Intensive-care; Beliefs; Opinions And Attitudes; Management; Critically Ill Children; Health Aspects; Analysis; Nurses; Intensive Care Units Pediatric; Pediatric Nursing; Family; Practice
BACKGROUND:
Despite reported challenges encountered by nurses who provide palliative care to children, few researchers have examined this phenomenon from the perspective of nurses who care for children with life-threatening illnesses in pediatric intensive care units.
OBJECTIVES:
To describe and interpret the essence of the experiences of nurses in pediatric intensive care units who provide palliative care to children with life-threatening illnesses and the children's families.
METHODS:
A hermeneutic phenomenological study was conducted with 12 pediatric intensive care unit nurses in the northeastern United States. Face-to-face interviews and field notes were used to illuminate the experiences.
RESULTS:
Five major themes were detected: journey to death; a lifelong burden; and challenges delivering care, maintaining self, and crossing boundaries. These themes were illuminated by 12 subthemes: the emotional impact of the dying child, the emotional impact of the child's death, concurrent grieving, creating a peaceful ending, parental burden of care, maintaining hope for the family, pain, unclear communication by physicians, need to hear the voice of the child, remaining respectful of parental wishes, collegial camaraderie and support, and personal support.
CONCLUSION:
Providing palliative care to children with life-threatening illnesses was complex for the nurses. Findings revealed sometimes challenging intricacies involved in caring for dying children and the children's families. However, the nurses voiced professional satisfaction in providing palliative care and in support from colleagues. Although the nurses reported collegial camaraderie, future research is needed to identify additional supportive resources that may help staff process and cope with death and dying.
Stayer; Lockhart; J S
American Journal Of Critical Care
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.4037/ajcc2016251
Healthcare Staff ’s Experience In Providing End-of-life Care To Children: A Mixed-method Review.
Healthcare Staff; Children; End Of Life; Experiences; Mixed-method Review
BACKGROUND:
Staff who provide end-of-life care to children not only have to deal with their own sense of loss but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges.
AIM:
The aim of this review is to explore the experiences of healthcare professionals who provide end-of-life care to children in order to inform the development of interventions to support them, thereby improving the quality of paediatric care for both children and their families.
DATA SOURCES:
Searches included CINAHL, MEDLINE, Web of Science, EMBASE, PsychINFO and The Cochrane Library in June 2015, with no date restrictions. Additional literature was uncovered from searching reference lists of relevant studies, along with contacting experts in the field of paediatric palliative care.
DESIGN:
This was a systematic mixed studies review. Study selection, appraisal and data extraction were conducted by two independent researchers. Integrative thematic analysis was used to synthesise the data.
RESULTS:
The 16 qualitative, 6 quantitative and 8 mixed-method studies identified included healthcare professionals in a range of settings. Key themes identified rewards and challenges of providing end-of-life care to children, the impact on staff's personal and professional lives, coping strategies and key approaches to help support staff in their role.
CONCLUSION:
Education focusing on the unique challenges of providing end-of-life care to children and the importance of self-care, along with timely multidisciplinary debriefing, are key strategies for improving healthcare staff's experiences, and as such the quality of care they provide.
McConnell T; Scott D; Porter S
Journal Of Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1177/0269216316647611