The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care
child; Palliative Care; article; female; human; male; social support; palliative therapy; coping; sibling; clinical article; Portugal; clinical practice; adolescent; caregiver; semi structured interview; family; grandchild; psychologic assessment; Coping Strategy Questionnaire; clinical assessment tool; grandparent
In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are underexplored in the literature and clinical practice. The aim of the present study is to propose a psychological experience assessment tool of grandparents in this context. It consists of a sociodemographic and clinical data sheet and a semi-structured interview based on sharing a testimony with other grandparents. On the basis of the latter, 10 dimensions were explored through the grandparents’ own perspective: representation of the illness; representation of the sick grandchild; changes in routine and life; family impact; grandparents’ contributions to the family system; social support and coping strategies; emotional impact; triple concern; needs identification; and post-traumatic growth. The tool can be used in person or remotely and may be combined with other instruments. Its application enables a personalized identification of needs and challenges for each family, promoting the adjustment of the clinical intervention to their wellbeing and resilience from an eco-systemic perspective. The clinical tool is presented in detail and its importance in the context of research and systemic intervention is discussed.
Nogueira AJ; Ribeiro MT
Clinics and Practice
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/10.3390/clinpract14010010" target="_blank" rel="noreferrer noopener">10.3390/clinpract14010010</a>
A "good" death in a pediatric ICU: Is it possible?
human; family; palliative therapy; medical decision making; Medline; review; newborn intensive care; information retrieval; brain death; clinical pathway
Objectives: In the modern pediatric intensive care unit (PICU) physicians are often faced with the need to interrupt life-sustaining treatment (LST) and to allow children to die when no further treatment options are available. Consequently, the importance of palliative care has been increasing in this context. The goal of this review is to provide intensivists with guidelines to allow PICU patients to have a more dignified and humane death. Source of data: Medline was searched using relevant keywords, emphasizing the topic of death in the PICU. The principles of palliative care medicine were then applied to this context. Summary of data: To ensure a dignified death for a child receiving palliative care in the PICU some important measures must be taken, such as: let the family participate in the decision-making process in an open and honest manner; allow family members to perform their religious rites and rituals; offer them moments of complete privacy; effectively manage pain and discomfort, especially at the time of removal of LST; and finally, let the family be present when LST is interrupted, if they so desire. Conclusion(s): A child's death following withdrawal of LST in the PICU can be humane and dignified if basic principles of palliative care are followed. This is especially important in an environment that is notorious for the use of complex technology and described by the general public as inhumane.
Garros D
Jornal de Pediatria
2003
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/10.2223/jped.1101" target="_blank" rel="noreferrer noopener">10.2223/jped.1101</a>
When a Child Dies in the PICU Despite Ongoing Life Support
death; treatment withdrawal; child; Child; family; human; human relation; long term care; Only Child; palliative therapy; pediatric intensive care unit; psychology; resuscitation; terminal care; treatment outcome; uncertainty
OBJECTIVES: To examine the circumstance of death in the PICU in the setting of ongoing curative or life-prolonging goals. DATA SOURCES: Multidisciplinary author group, international expert opinion, and use of current literature. DATA SYNTHESIS: We describe three common clinical scenarios when curative or life-prolonging goals of care are pursued despite a high likelihood of death. We explore the challenges to providing high-quality end-of-life care in this setting. We describe possible perspectives of families and ICU clinicians facing these circumstances to aid in our understanding of these complex deaths. Finally, we offer suggestions of how PICU clinicians might improve the care of children at the end of life in this setting. <br/>CONCLUSION(S): Merging curative interventions and optimal end-of-life care is possible, important, and can be enabled when clinicians use creativity, explore possibilities, remain open minded, and maintain flexibility in the provision of critical care medicine. When faced with real and perceived barriers in providing optimal end-of-life care, particularly when curative goals of care are prioritized despite a very poor prognosis, tensions and conflict may arise. Through an intentional exploration of self and others' perspectives, values, and goals, and working toward finding commonality in order to align with each other, conflict in end-of-life care may lessen, allowing the central focus to remain on providing optimal support for the dying child and their family.
Lewis-Newby M; Clark JD; Butt WW; Dryden-Palmer K; Parshuram CS; Truog RD
Pediatric Critical Care Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/PCC.0000000000001611" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000001611</a>
Discussing Death as a Possible Outcome of PICU Care
attitude to death; death; child; critical illness; decision making; doctor patient relationship; family; female; human; interpersonal communication; male; pediatric intensive care unit; physician; psychology; risk assessment; terminal care; uncertainty
OBJECTIVES: To describe practical considerations related to discussions about death or possible death of a critically ill child. DATA SOURCES: Personal experience and reflection. Published English language literature. STUDY SELECTION: Selected illustrative studies. DATA EXTRACTION: Not available. DATA SYNTHESIS: Narrative and experiential review were used to describe the following areas benefits and potential adverse consequences of conversations about risk of death and the timing of, preparation for, and conduct of conversations about risk of death. <br/>CONCLUSION(S): Timely conversations about death as a possible outcome of PICU care are an important part of high-quality ICU care. Not all patients "require" these conversations; however, identifying patients for whom conversations are indicated should be an active process. Informed conversations require preparation to provide the best available objective information. Information should include distillation of local experience, incorporate the patients' clinical trajectory, the potential impact(s) of alternate treatments, describe possible modes of death, and acknowledge the extent of uncertainty. We suggest the more factual understanding of risk of death should be initially separated from the more inherent value-laden treatment recommendations and decisions. Gathering and sharing of collective knowledge, conduct of additional investigations, and time can increase the factual content of risk of death discussions. Timely and sensitive delivery of this best available knowledge then provides foundation for high-quality treatment recommendations and decision-making.
Gilleland JC; Parshuram CS
Pediatric Critical Care Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/PCC.0000000000001557" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000001557</a>
Whispers in the waiting room
waiting room; anticipatory grief; article; child; clinician; disability; family; human; intensive care unit; life sustaining treatment; longevity; newborn period; palliative therapy; parent; watchful waiting
Kim, aged 3 years, lies asleep, waiting for a miracle. Outside her room, the nurses on the night shift pad softly through the half-lighted corridors, stopping to count breaths, take pulses, or check the intravenous pumps. In the morning, Kim will have her heart fixed. She will be medicated and wheeled into the operating suite. Machines will take on the functions of her body: breathing and circulating blood. The surgeons will place a small patch over a hole within her heart, closing off a shunt between her ventricles that would, if left open, slowly kill her. Kim will be fine if the decision to operate on her was correct; if the surgeon is competent; if that competent surgeon happens to be trained to deal with the particular anatomic wrinkle that is hidden inside Kim's heart; if the blood bank cross-matched her blood accurately and delivered it to the right place; if the blood gas analysis machine works properly and on time; if the suture does not snap; if the plastic tubing of the heart-lung machine does not suddenly spring loose; if the recovery room nurses know that she is allergic to penicillin; if the "oxygen" and "nitrogen" lines in the anesthesia machine have not been reversed by mistake; if the sterilizer temperature gauge is calibrated so that the instruments are in fact sterile; if the pharmacy does not mix up two labels; and if when the surgeon says urgently, "Clamp, right now," there is a clamp on the tray. If all goes well, if ten thousand "ifs" go well, then Kim may sing her grandchildren to sleep some day. If not, she will be dead by noon tomorrow. If Kim were an astronaut, strapped into her seat at the top of some throbbing rocket, the crowd assembled would hold their breath in the morning Florida sun. "How can it possibly work?" they would whisper. "How many parts are there in that machine? A million? What if one fails? My toaster fails. Please let it all work right." The machine would bellow smoke, the gantry fall away, and slowly the monster would rise, Kim on top. If it worked, they would cheer. "A miracle," they would shout, in awe that the millions of tiny lines of effort, the millions of tiny lines of cause and effect, from job shops in Ohio and laboratories in Pasadena, criss-crossing through time and space, could converge so magnificently in a massive, gleaming rocket launched exactly right. Perfect. If it failed, they would cry. So would the rocket's makers, who had done their very best. No one wanted it to end this way. Poor Kim. What was the trouble? What went wrong? Why? The lines of cause will converge around Kim in the morning as she wheels toward the operating room. Thousands upon thousands of elements weaving a basket to hold her safely, all hope. No crowd holds its breath tonight; but wouldn't they if they knew? From: Berwick DM. Controlling variation in health care: a consultation from Walter Shewhart. Medical Care 1991; 29: 1212-1225.
Cooper MS; McCallum Z; Antolovich G
Brain
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/10.1093/brain/awad333" target="_blank" rel="noreferrer noopener">10.1093/brain/awad333</a>
Community-Based Pediatric Palliative Care: How Services Support Children's and Families' Quality of Life
mental health; child; article; controlled study; human; male; palliative therapy; pain; sibling; spiritual care; quality of life; interview; interpersonal communication; cost effectiveness analysis; adolescent; socialization; caregiver; convenience sample; bereavement support; family; clinician; participatory research; self care; psychological well-being; physical well-being; disease management; community; community integration
Background: The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with life-limiting conditions and their families. CBPPC services aim to improve children and families' quality of life (QOL). <br/>Objective(s): To identify perceived domains of QOL important for children and families and to understand whether and how CBPPC supports QOL. <br/>Design(s): A community-based participatory research framework was used to develop recruitment and data collection materials for eight focus groups and seven interviews. Collected data were transcribed and analyzed with an inductive approach. Setting/Subjects: A convenience sample of 33 PPCN caregivers, 20 providers, and seven key informants, including policymakers, community organizations, and hospital-based clinicians, were interviewed virtually in the United States. Measurements: Perceived QOL domains for children and families, respectively, and perceived impact of CBPPC services on QOL. <br/>Result(s): Reported QOL domains described as important for children were socialization/community integration and accessibility; expression/play; and physical wellness. Control or autonomy, psycho-emotional wellness, and self-care were identified as important for families. Clinical services were described as "integral to mental health" through offered spiritual support; advocacy in the community; and education. PPCN's integrative services were noted as distractions from pain and helped improve communication and bonding. Sibling support and bereavement care were also mentioned as impactful on QOL. <br/>Conclusion(s): Family-centered CBPPC was described as supportive of children's and families' QOL. Future studies should consider using population-based QOL measures, leveraging the QOL domains identified through this analysis and other outcome measures in a cost-effectiveness analysis.
Wang Y; Ferreira E; Savageau J; Beitman A; Young M; Gabovitch E; Merriam G; Jozan A; Padgett K; Bateman S
Journal of 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/10.1089/jpm.2023.0147" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0147</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>
Implementation of evidence-based psychosocial care in six pediatric oncology units across Pakistan
palliative care; pediatric; quality of life; family; oncology; psychosocial; Pakistan; anxiety/depression
BACKGROUND: Despite rising childhood cancer incidence, low-middle income countries often fall short of quality resources to prioritize and develop psycho-oncology services. Patients and families suffering from cancer are subject to great psychological distress and require continuous psychosocial support. Unfortunately, a lack of mental health awareness and trained providers remains a pertinent issue in resource-strained countries such as Pakistan. METHODS: IHHN has a well-established Psychosocial Department for pediatric oncology patients. Mental health counseling, child life, palliative care, bereavement and, social support are provided by a team of trained psychologists and social workers. In an effort to promote the implementation of this psychosocial model, partnerships were formed with public-sector pediatric oncology units and a structured one week online training module was conducted followed by a 1 week hands-on training. RESULTS: Of the total 67 participants registered, 24 were eligible for certificates. The course was open to healthcare workers around the country, considering that dedicated psychosocial personnel are not present in all units. The highest number of participants were from Karachi, accounting for 56.7% and were psychologists, 32.8%. On feedback, all participants said they would recommend this course to others and 80% chose self-motivation as the reason for enrolling compared to 12% who chose workplace requirement and 4% chose certification. Psychosocial workers selected for hands-on training were empowered to implement the POD model at their units and mentorship was continued after the training. CONCLUSION: Establishment of counseling and mental health services must be prioritized and integrated into childhood cancer healthcare delivery. Further studies are needed for establishing psychosocial models in low resource settings.
Farooq W; Nur YA; Baig N; Najmi A; Raza MR
Journal of Psychosocial Oncology
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/10.1080/07347332.2022.2160944" target="_blank" rel="noreferrer noopener">10.1080/07347332.2022.2160944</a>
Palliative Care for Childhood Cancer
child; Palliative Care; human; quality of life; family; home care; practice guideline; pain; Netherlands; cancer patient; physician; hope; health care quality; hospital care; health care planning; health care access; health care personnel; daily life activity; cancer palliative therapy; evidence based practice; medical education; editorial; nausea; child health care; collaborative care team; vomiting; hematopoietic stem cell transplantation; nurse; disease burden; advanced cancer; cause of death; patient worry; health care need; illness trajectory; childhood cancer/th [Therapy]; personalized cancer therapy
Cure rates for children with cancer are improving, but often at the cost of quality of life during treatment [...].
Michiels EM
Children
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children9060777" target="_blank" rel="noreferrer noopener">10.3390/children9060777</a>
"I'm Afraid If This Goes Wrong… What Will Become of Me?": The Psychological Experience of Grandparents in Pediatric Palliative Care
Palliative Care; pediatric palliative care; family; life-limiting conditions; grandparents; psychological experience
Portugal has been identified as the European country with the most rapid evolution of Pediatric Palliative Care provision, where approximately 7800 children have life-limiting conditions. This is a highly complex experience not only for the children and their parental caregivers, but also for their healthy siblings and grandparents. The present descriptive-exploratory study seeks to contribute to the understanding of the psychological experience of life-limiting conditions in grandparents. A total of 19 families, consisting of 15 grandmothers and 4 grandfathers, completed a sociodemographic and clinical data sheet and a semi-structured interview was conducted in which they shared their testimony. The results of the thematic analysis highlighted an integrated view on 10 important dimensions in the grandparental experience and promoted creative responses by means of their own perspective. However, it has some limitations, such as the small sample size and the data collection procedure via telephone. The results contribute to the design of specific intervention methodologies in an ecosystemic approach and suggest further research to explore more protective factors and communication with health professionals. For psychological intervention, it is suggested considering the identification of individual and family resources that contribute to the activation of key processes in resilience and posttraumatic growth.
Nogueira AJ; Ribeiro MT
Healthcare
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/healthcare11172391" target="_blank" rel="noreferrer noopener">10.3390/healthcare11172391</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
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/S0103-7331202333034.en" target="_blank" rel="noreferrer noopener">10.1590/S0103-7331202333034.en</a>
An Analysis of John Bowlby’s Mourning Stages in Family Art Therapy as a Way to Help the Family Mourning Process
Bereavement; Hospice Care; Family; Art Therapy; Pallative care
Purpose: Pediatric palliative care is a rapidly developing multidisciplinary approach that supports children with life-limiting conditions and their families. However, there is limited evidence on how to effectively support bereaved parents and siblings. The purpose of this study is to explore the therapeutic impact of art therapy for bereaved families, in accordance with John Bowlby’s four-stage theory of mourning. Methods: This single-case study employed the consensual qualitative research method. Art therapy records of bereaved families were reviewed individually, and records from one case were selected. Verbal statements made during the art therapy sessions and photocopies of the artworks were analyzed to understand the mourning process of the family. Results: A total of 113 statements and 12 artworks from 19 art therapy sessions were analyzed. As the art therapy progressed, each family member exhibited a pattern of engaging in more positive and healthy conversations in daily life, demonstrating the final stage of mourning: reorganization and recovery. The family dynamics also revealed that they reconstructed their inner world and redefined the meaning of loss, which is the final stage of mourning. The art therapy provided a safe environment for the family, allowing them to fulfill their wishes and regain the strength needed for recovery. Conclusion: This study suggests that art therapy supports bereaved families in alleviating their psychological difficulties, engaging in a healthy mourning process, and functioning as members of society. Further research is needed to better understand the effect of art therapy as a bereavement support tool in pediatric palliative care.
Seon AY; Sung HA; Cho HK; Min-Sun K
Journal of Hospice and 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/10.14475/jhpc.2023.26.2.27%5C">10.14475/jhpc.2023.26.2.27\</a>"
"The Key Is to Value Every Little Achievement": A Qualitative Study of the Psychological Experience of Parent Caregivers in Paediatric Palliative Care
Palliative Care; family; qualitative methods; chronic illness; experience; health psychology
In Europe, Portugal has been identified as the country with the most rapid evolution of paediatric palliative care provision, which is a highly complex experience for families. The present descriptive-exploratory study seeks to contribute to the understanding of the psychological experience of life-limiting conditions in parent caregivers. A total of 14 families completed a sociodemographic and clinical data sheet and answered a structured online interview based on an incomplete narrative resulting from the Unwanted Guest Metaphor. A thematic analysis of the various narratives was performed through an inductive-deductive process. The results provide a holistic view of 10 essential dimensions in the parental psychological experience and contribute to the design of intervention methodologies in an eco-systemic approach. The importance of clear communication with health professionals, an awareness of the unpredictability of the disease, the desire for more self-care, the difficulty in understanding their children's needs and the threat implicit in everyday life are some of the main findings. This research emphasizes the importance of having opportunities of emotional expression and psychoeducation about anxiety' management, enhancing the perception of positive characteristics in children with palliative needs and creating time for the couple. The study has some limitations, such as the small sample size, and suggests that further research should explore the father's experience.
Nogueira AJ; Ribeiro MT
Clinics and Practice
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/clinpract13030062" target="_blank" rel="noreferrer noopener">10.3390/clinpract13030062</a>
Sleep quality moderates the association between family bereavement and heart rate variability
Bereavement; Sleep; Family; Descriptive Statistics; Human; Death; Questionnaires; Surveys; Bereavement; Cardiovascular Diseases; Comparative Studies; Family Attitudes; Family Relations; Funding Source; Health Behavior; Heart Rate Variability; Insomnia; Psychological Distress; Psychological Well-Being; Psychosocial Factors; Sleep Quality; United States; Vulnerability
Two separate bodies of literature point to the link between family bereavement and cardiovascular health and between sleep quality and cardiovascular outcomes. However, less is known about the joint influence of family bereavement and sleep quality on cardiovascular functioning. The aims of this study were to examine the relationships between experiencing the death of a family member and heart rate variability (HRV) and to further explore whether these associations differ by sleep quality. Using data from the Midlife in the United States (MIDUS) Biomarker Project, the sample for this study included respondents who experienced the death of an immediate family member - father, mother, spouse, sibling, or child - within a year before the Biomarker project and those who did not experience any deaths (N = 962). We used two measures of HRV and sleep quality was measured using the Pittsburgh Sleep Quality Index. Results showed that experiencing the death of a family member was associated with worse HRV only among those with poor sleep quality and not for those with good sleep quality. These results suggest that poor sleep quality may indicate psychophysiological vulnerability for those who experienced the death of a family member. Interventions to improve sleep quality could be effective in enhancing cardiovascular health of bereaved individuals.
Chai HW; Jester DJ; Lee S; Joo S; Umberson DJ; Almeida DM
Journal of Behavioral 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/10.1007/s10865-022-00388-1%5C">10.1007/s10865-022-00388-1\</a>"
Self-reported experiences of siblings of children with life-threatening conditions: A scoping review
Sibling; critical illness; scoping review Adaptation Psychological; Child; Family; Family Health; Humans; Self Report; Siblings psychology
Sibling relationships are one of the most long-lasting and influential relationships in a human?s life. Living with a child who has a life-threatening condition changes healthy siblings? experience. This scoping review summarized and mapped research examining healthy siblings? experience of living with a child with a life-threatening condition to identify knowledge gaps and provide direction for future research. Studies were identified through five electronic databases. Of the 34 included studies, 17 used qualitative methods, four gathered data longitudinally and 24 focused on children with cancer. Four broad themes of sibling experience were identified across studies: family functioning, psychological well-being, social well-being, and coping. Siblings experienced challenges and difficulties over the course of the child?s illness. Future research should incorporate longitudinal designs to better understand the trajectory of siblings? experiences and focus on a wider variety of life-threatening conditions.
Tay J; Widger K; Stremler R
Journal of Child Health 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/10.1177/13674935211026113" target="_blank" rel="noreferrer noopener">10.1177/13674935211026113</a>
Siblings of children with a complex chronic health condition: Maternal posttraumatic growth as a predictor of changes in child behavior problems
Behavior Problems; child behavior problems; Chronic Illness; complex chronic conditions; families; Family; Palliative Care; pediatric palliative care; Pediatrics; posttraumatic growth; Posttraumatic Growth; siblings; Siblings
Objective: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. Methods: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. Results: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. Conclusion: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Stephenson E; DeLongis A; Steele R; Cadell S; Andrews GS; Siden H
Journal of Pediatric Psychology
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/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsw053</a>
Siblings’ voices: A prospective investigation of experiences with a dying child
Death and Dying; dying child; families; Family; Hospitals; life experiences; Life Experiences; peers; Peers; siblings; Siblings
Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal, qualitative study over 2 years using interpretive descriptive methodology to understand siblings’ perspectives when a brother or sister was dying at home or in hospital. The insights from the 10 siblings revealed complex experiences, both personal and with the ill child, their families, and peers. These experiences were paradoxically sources of strain and of support, revealing the importance of validation and normalization in assisting siblings to successfully navigate the experience. (PsycINFO Database Record (c) 2019 APA, all rights reserved)
Eaton RC; Widger K; Beaune L; Neville A; Cadell S; Steele R; Rapoport A; Rugg M; Barrera M
Death Studies
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer noopener">10.1080/07481187.2017.1334009</a>
The experience and perceptions of siblings of pediatric intensive care unit patients: A qualitative study
Family; Hospital Discharge; Intensive Care; Pandemics; Pediatrics; Phenomenology; Post PICU outcomes; Sibling experience; Siblings; Trauma
Over 200,000 patients are admitted into pediatric intensive care units (PICU) annually in North America, exposing families to extreme psychosocial stressors and adverse outcomes. While previous research has shown PICU patients and their parents experience post-traumatic stress disorder, few studies have addressed post-PICU outcomes in siblings and siblings' voices of their own experience are absent from the literature.The purpose of this study was to understand the experiences of school aged and adolescent siblings, ages six to 17 years, whose brother or sister experienced admission to a PICU due to a critical illness or injury. Interpretive phenomenology was used to gain an in-depth understanding of the experiences and perceptions of the lived experiences of siblings of PICU patients. Seven participants were identified from a list of families whose child was in the PICU at Dell Children's Medical Center within the past two years and discharged from the hospital for three months or longer. Families were screened for the presence of siblings in the household and for additional inclusion and exclusion criteria before being approached for to participate in the study. Those families meeting criteria received a study information letter and follow up phone call inviting them to participate and providing contact information for the researcher if they wanted to receive further information on the study. Data collection consisted of demographic information to describe the sample and semi-structured interviews to address the research questions. Interviews were conducted either face-to-face prior to the COVID-19 pandemic or by videoconference during the pandemic, and audio recorded and then transcribed word-for-word. Data analysis and interpretation utilized Colaizzi's methodology and Merleau-Ponty's Phenomenology of Perception (2012). Four themes emerged from the data: What I Remember; What I Felt; What Helped; and What's the Same and What's Different. (PsycInfo Database Record (c) 2022 APA, all rights reserved)
Christie LM
Children's Health 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/10.1207/s15326888chc2401_5" target="_blank" rel="noreferrer noopener">10.1207/s15326888chc2401_5</a>
The efficacy of educational interventions on neonatal intensive care unit nurses knowledge and attitude toward neonatal palliative care
fatigue; Palliative Care; Infant Newborn; adult; article; controlled study; female; hospital admission; human; male; death; family; pain; chronic pain; palliative therapy; neonatal intensive care unit; nursing; prognosis; grief; anxiety; morphine; human experiment; nurse; scoring system; aggression; questionnaire; demographics; sedation; nausea and vomiting; respiration depression; care behavior; Jordan; pretest posttest design; work experience; opiate; attitude; education program; knowledge; adjuvant therapy; analgesic activity; cocaine; drowsiness; drug dependence; educational status; electrolyte disturbance; emotional deprivation; intestine; marriage; neonatal intensive care unit attitude scale; pethidine
Abuhammad S; Elayyan M; El-Bashir M
Electronic Journal of General 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://www.ejgm.co.uk/download/the-efficacy-of-educational-interventions-on-neonatal-intensive-care-unit-nurses-knowledge-and-12902.pdf">10.29333/ejgm/12902</a>
Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members
communication; family; Patient Participation; preference for care; qualitative; self report; siblings
BACKGROUND: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferences, priorities and abilities. OBJECTIVES: The aim was to identify preferences for patient-reported outcome measure design (recall period, response format, length, administration mode) to improve the feasibility, acceptability, comprehensibility and relevance of a child and family-centred outcome measure, among children with life-limiting conditions and their family members. METHOD: A semi-structured qualitative interview study seeking the perspectives of children with life-limiting conditions, their siblings and parents on measure design was conducted. Participants were purposively sampled and recruited from nine UK sites. Verbatim transcripts were analysed using framework analysis. RESULTS: A total of 79 participants were recruited: 39 children aged 5-17 years (26 living with a life-limiting condition; 13 healthy siblings) and 40 parents (of children aged 0-17 years). Children found a short recall period and a visually appealing measure with ten questions or fewer most acceptable. Children with life-limiting conditions were more familiar with using rating scales such as numeric and Likert than their healthy siblings. Children emphasised the importance of completing the measure alongside interactions with a healthcare professional to enable them to talk about their responses. While parents assumed that electronic completion methods would be most feasible and acceptable, a small number of children preferred paper. CONCLUSIONS: This study demonstrates that children with life-limiting conditions can engage in communicating preferences regarding the design of a patient-centred outcome measure. Where possible, children should be given the opportunity to participate in the measure development process to enhance acceptability and uptake in clinical practice. Results of this study should be considered in future research on outcome measure development in children.
Coombes L; Harðardóttir D; Braybrook D; Roach A; Scott H; Bristowe K; Ellis-Smith C; Downing J; Bluebond-Langner M; Fraser LK; Murtagh FEM; Harding R
The Patient
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s40271-023-00627-w" target="_blank" rel="noreferrer noopener">10.1007/s40271-023-00627-w</a>
Challenges and opportunities in providing palliative care services to children with a life-limiting illness: A systematic review
palliative therapy; quality of life; child; Child; family; health care personnel; human; Only Child; Palliative Care; qualitative research
Background Palliative care for children is an innovative approach that helps improve the quality of life of children suffering from life-limiting illnesses, and their family members. The WHO recognized palliative care as a part of universal health coverage. However, there is inadequate availability and inequitable distribution of palliative care services for children in most parts of the world. We reviewed the existing literature to assess (i) the challenges in providing palliative care services for children suffering from life-limiting illnesses and (ii) the strategies or opportunities to overcome these challenges. Methods We conducted systematic searches in the PubMed and Scopus databases to find articles published in the past 10 years (January 2011 to December 2020). The population, concept and context (PCC) framework was used to devise a search strategy in an electronic database. Results A total of 1562 articles were found by searching the database and other sources. Title and abstracts of articles were screened, and 206 articles were selected for full-text review. After scrutiny 28 articles met the inclusion criteria. Barriers to and opportunities in the provision of palliative care services for children were identified at policy, organizational, healthcare provider, and patient/family levels. Conclusion We found that the majority of barriers to provision of palliative care services for children with life-limiting illnesses can be addressed by adopting research-driven strategies. Adequate and equitable distribution of palliative care services is required for improving children and their family members' quality of life.
Agrawal US; Sarin J; Bakhshi S; Garg R
The National Medical Journal of India
2023
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<a href="http://doi.org/10.25259/NMJI_349_2022" target="_blank" rel="noreferrer noopener">10.25259/NMJI_349_2022</a>
The experience of families in face of the finiteness of their children in the process of adopting palliative care
Family; Palliative Care; Adaptation Psychological; Child; Communication; Existentialism; Humans; Only Child; Palliative Care; Qualitative Research
OBJECTIVE: To reveal the experience of family members after learning their child would adopt palliative care., METHOD: Phenomenological research on Heidegger's perspective. The participants were eleven family members of children who were recommended palliative care in the Pediatric Intensive Care Unit from a university hospital in southern Brazil. The statements were obtained in a semi-structured interview, from January to November/2017, and submitted to Heidegger's theoretical-philosophical analysis. Research approved by the institution's Ethical Committee., RESULTS: The communication of palliative care triggers the perception of the child's existencial facticity in the Family, revealing reactions explained in the thematic dimensions: "Coping with the finiteness of the child when confronted with the proposal of adopting palliative care" and "The need for compassionate and attentive care"., FINAL CONSIDERATIONS: Phenomenology allows us to understand the parent's existential purpose. An understanding perspective can help interdisciplinary teams to communicate the adoption of palliative care in a sensitive and ethical way, focusing on the best interest of the child.
Neis M; Issi HB; da Motta Mda G.; Rocha CMF; Carvalho PRA
Revista Gaúcha de Enfermagem
2023
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<a href="http://doi.org/10.1590/1983-1447.2022.20220174.en" target="_blank" rel="noreferrer noopener">10.1590/1983-1447.2022.20220174.en</a>
Shared Spiritual Beliefs between Adolescents with Cancer and Their Families
quality of life; Adolescent; Adult; Female; Follow-Up Studies; Humans; Male; Prognosis; Decision Making; Longitudinal Studies; Single-Blind Method; Young Adult; Cross-Sectional Studies; Family/psychology; Religion and Medicine; Spirituality; Advance Care Planning/statistics & numerical data; Adolescent Behavior; family; adolescents; cancer; congruence; spirituality; funding from the American Cancer Society to adapt/translate this protocol into; Neoplasms/psychology/therapy; Spanish. There are no other conflicts of interest to disclose.; study from the National Institutes of Health. Maureen E. Lyon is also receiving
BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology care and an integral dimension of pediatric advance care planning. PROCEDURE: As part of four-site randomized controlled trial of FACE for teens with cancer, the functional assessment of chronic illness therapy-spiritual well-being- version 4 (FACIT-Sp-EX-4) was completed independently by 126 adolescents with cancer/family dyads. The prevalence-adjusted and bias-adjusted kappa (PABAK) measured congruence on FACIT-Sp-EX-4. RESULTS: Adolescents (126) had mean age of 16.9 years, were 57% female and 79% White. Religious/spiritual classifications were: Catholic (n = 18), Protestant (n = 76), Mormon (n = 3), none/atheist (n = 22), other (n = 5), and unknown (n = 2). Agreement at item level between spiritual well-being of adolescents and families was assessed. Three items had ≥90% agreement and Excellent PABAK: "I have a reason for living," "I feel loved," "I feel compassion for others in the difficulties they are facing." Three items had <61% agreement and Poor PABAK: "I feel a sense of harmony within myself," "My illness has strengthened my faith or spiritual beliefs," "I feel connected to a higher power (or God)." Dyadic congruence was compared by social-demographics using median one-way analysis. Male family members (median = 72%) were less likely to share spiritual beliefs with their adolescent than female family members (median = 83%), P = .0194. CONCLUSIONS: Family members may not share spiritual beliefs with adolescents and may be unaware of the importance of spiritual well-being for adolescents.
Livingston J; Cheng YI; Wang J; Tweddle M; Friebert S; Baker JN; Thompkins J; Lyon ME
Pediatric Blood and Cancer
2020
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<a href="http://doi.org/10.1002/pbc.28696" target="_blank" rel="noreferrer noopener">10.1002/pbc.28696</a>
Vulnerability and Agency across Treatment-Seeking Journeys for Acutely Ill Children: How Family Members Navigate Complex Healthcare Before, During and After Hospitalisation in A Rural Kenyan Setting
Adult; Child Preschool; Cohort Studies; Female; Humans; Infant; Male; Qualitative Research; Prospective Studies; Family; Continuity of Patient Care; Hospitalization; Child Mortality; Social Support; Acute Disease; Caregivers; Health Facilities; Family Characteristics; Vulnerable Populations; Rural Population; Kenya/epidemiology; Agency; Child Health; Childhood acute illness; Delivery of Health Care/standards; Treatment-seeking; Vulnerability
BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations and ability to make choices and act (their agency). We examined vulnerability and agency across treatment-seeking journeys for acutely ill children and considered the implications for policy and practice. METHOD: A qualitative sub-study was embedded within the prospective CHAIN Network cohort study, which is investigating mechanisms of inpatient and post-hospital discharge mortality among acutely ill young children across a spectrum of nutritional status. Primary data were collected from household members of 20 purposively selected cohort children over 18 months through formal interviews (total n = 74), complemented by informal discussions and observations. Data were analysed using narrative and thematic approaches. RESULTS: Treatment-seeking pathways were often long and complex, particularly for children diagnosed as severely malnourished. Family members' stories reveal that children's carers, usually mothers, navigate diverse challenges related to intersecting vulnerabilities at individual, household and facility levels. Specific challenges include the costs of treatment-seeking, confusing and conflicting messaging on appropriate care and nutrition, and poor continuity of care. Strong power inequities were observed between family members and health staff, with many mothers feeling blamed for their child's condition. Caregivers' agency, as demonstrated in decision-making and actions, often drew on the social support of others but was significantly constrained by their situation and broader structural drivers. CONCLUSION: To support children's care and recovery, health systems must be more responsive to the needs of families facing multiple and interacting vulnerabilities. Reducing incurred treatment costs, improving interpersonal quality of care, and strengthening continuity of care across facilities is essential. Promising interventions need to be co-designed with community representatives and health providers and carefully tested for unintended negative consequences and potential for sustainable scale-up.
Zakayo SM; Njeru RW; Sanga G; Kimani MN; Charo A; Muraya K; Sarma H; Uddin MF; Berkley JA; Walson JL; Kelley M; Marsh V; Molyneux S
International Journal for Equity in Health
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12939-020-01252-x" target="_blank" rel="noreferrer noopener">10.1186/s12939-020-01252-x</a>
Explore the Bereavement Needs of Families of Children With Cancer From the Perspective of Health Caregivers: A Qualitative Study
Introduction: The experience of bereavement is associated with severe physical, psychological, social and spiritual reactions in the parents of children with cancer. Because of that, the families of these children need to receive bereavement services. The aim of this study was to explore the bereavement needs of families of children with cancer from the perspective of health caregiver as people who have a close relationship with the child and the family. Methods: This qualitative descriptive study design in. In total 15 semi-structured interviews were conducted using a purposive sampling in 2018. Interviews were recorded and transcribed and conventional content analysis was used to analysis the data. The Trustworthiness of the data were assessed according to the criteria of Lincoln and Guba. Results: From the data analysis, needs of the bereaved family were categorized in three dimension including "achieving peace," "Abandoned family access to care," and "continuing care." The category of "achieving peace" includes spiritual and existential support, companionship with the family, contact with other bereaved families, support in passing and accepting the bereaved and continuing empathetic communication with the family, the category "Abandoned family access to care" includes the promotion of family self-control, awareness of end-of-life care to the family, and the category of "continuing care," includes formal and informal family care and individualized care. Conclusion: It is necessary for the care team to pay special focus to family considering the needs of the family about the death of the patient and the challenges of the family bereavement period. It is recommended that members of the health care team should be trained in assessing family needs, identifying risks of adverse outcomes, continuing care, and providing resources during bereavement. The needs of the bereaved family should also be addressed in their care plan.
Pakseresht M; Rassouli M; Rejeh N; Rostami S; Barasteh S; Molavynejad S
Frontiers in Psychology
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/10.3389/fpsyg.2021.750838" target="_blank" rel="noreferrer noopener">10.3389/fpsyg.2021.750838</a>
Encouraging Family Physicians to Fill the Gaps in Hospice and Palliative Care for Children
Child; Humans; Hospices; Palliative Care; Physicians; Family; Hospice Care; Referral and Consultation
Fan JN; Kilpatrick LB
American Family Physician
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/" target="_blank" rel="noreferrer noopener"></a>
Patient and Family Participation in Medication Decisions on Discharge to Hospice Care
Humans; Adolescent; Hospice Care; Cross-Sectional Studies; Family; Decision Making; Shared Oregon PMC; PMC9784578 OTO; NOTNLM
Background: High-quality hospice care is characterized by patient-centered care and shared decision making between patients, families, and health care workers. However, little is known regarding the frequency and characteristics of patient and family participation in medication decisions on transition to hospice care. Objective: To quantify the frequency and characteristics of patient and/or family participation in medication decisions. Subjects: Adult (age ≥18 years) patients discharged from Oregon Health & Science University Hospital (OHSU) to hospice care between January 1, 2010 and December 31, 2016. Design: Cross-sectional study. Measures: The primary outcome was documented patient and/or family participation. Patient or family participation was defined as documentation of patient or family member discussion surrounding medication decisions in the discharge summary. We used logistic regression to identify patient and admission characteristics associated with documentation of patient or family member participation in medication decisions. Results: Among 348 eligible patients, patient and/or family participation was documented in 22% of discharges to hospice care. Higher Charlson comorbidity index (adjusted odds ratio [aOR]: 1.09, 95% confidence interval [CI]: 1.01-1.17) and having a diagnosis of cancer (aOR: 1.99, 95% CI: 1.16-3.43) were associated with an increased documentation of patient or family member participation in medication decisions. Patients admitted to the intensive care unit were less likely to have patient/family member participation (aOR: 0.55, 95% CI: 0.32-0.94). Having a specialty palliative care consultation was not significantly associated with patient or family member participation in medication decisions (aOR: 0.77, 95% CI: 0.40-1.48). Conclusions: Patient or family participation in medication decisions was documented for only 22% patients on discharge to hospice care. Opportunities to improve participation likely include increasing knowledge and capacity regarding primary palliative care for all clinicians and implementation of specialized interventions for patients and families transitioning to hospice care from acute care settings. FAU - Noble, Brie N
Noble BN; Izumi S; Tjia J; Ku IY; Kadoyama KL; McPherson ML; Furuno JAO
Journal of Palliative Medicine
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/10.1089/jpm.2021.0630" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0630</a>
Implementing a Palliative Care Education Program in the NICU and Why It Is so Important: A Literature Review
Infant; Neonatal Palliative Care; Family; Nursing Staff; Anxiety; educational program; end-of-life care; Infant; neonatal; Palliative Care; Newborn Humans Intensive Care Units
Aim: To review the literature relevant to palliative care educational programs for nursing staff and families in the NICU. Background: Few hospitals have a palliative care educational program that is in place despite the increasing need for one. Neonatal staff are not educated or prepared to provide end-of-life care (EOLC) and support to family members. There is a lack of literature that looks at parents' perception of EOLC and the potential benefit that proper education may have had on their experience. Methods: Sixteen articles were reviewed, including 7 cohort studies, 5 expert opinions, 1 experimental trail, 1 case-controlled study, 1 literature review, and 1 case study. Conclusion: Implementation of a palliative care education program can provide the necessary tools for neonatal staff to provide EOLC. This education can reduce the stress and anxiety that staff feel about EOLC. With proper education, the neonatal staff can then provide the necessary support for family members. Relevance to Clinical Practice: EOLC is part of all NICUs, and neonatal staff should receive proper education on how to handle such situations.
Arbuckle AD
Neonatal Network
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/10.1891/nn-2021-0010" target="_blank" rel="noreferrer noopener">10.1891/nn-2021-0010</a>
Family experience in a regional participant contact registry for research on intellectual disability
Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather than recruiting through multiple schools or service agencies. The authors describe the development of one such registry and results of a survey of registry families. Results suggest that families joined the registry to help others, they hope research in the ID field improves the daily lives of individuals with ID and their families, and they find research participation to be a positive experience. However, logistic concerns can be an important barrier to their research participation, and they would like more information about the research study both before and after participating.
Conners FA; Phillips BA; Rhodes JD; Hamilton JC
Intellectual and Developmental Disabilities
2014
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/10.1352/1934-9556-52.2.112" target="_blank" rel="noreferrer noopener">10.1352/1934-9556-52.2.112</a>
Sudden Unexpected Death in Childhood in Greater Manchester (United Kingdom): A Five-Year Review (2015–2020)
Bereavement; Cause of Death; Child Pediatricians; Child Welfare; Childhood; Coping; Death; Emergency Service; England; Evaluation; Family; Family Support; Infancy; Parents; Police Home Visits; Psychosocial Factors; Sudden
The sudden, unexpected death of a child (SUDC) is a devastating experience. It is vital that supportive and investigative services are effective and promote the best outcomes for families. Analysis of 5 years of data from 309 SUDC cases in Greater Manchester, United Kingdom (UK) shows how a number of key service outcomes can be measured and achieved through a raft of actions which are commensurate with and exceed the service level recommended by the UK Government. Annual reports covering the work of the Greater Manchester SUDC team are compiled from audit forms completed by the attending SUDC pediatrician for each case. Data from these reports from April 1, 2015 to March 31, 2020 were analyzed. Most cases happened out of normal working hours, predominantly on Sundays. This supports the need for a 24-hour, 7 days per week SUDC service to enable early investigation and timely support for families. The review demonstrated that the Greater Manchester model is able to deliver this in a rapid response with early attendance in emergency departments and early home visits; effective joint agency working with police, children's social services, and other agencies; and provision of support to families. The proposed instigation of a key worker role in the SUDC team is a welcome development. This is central to ameliorating the experience for parents by providing bereavement support separate from the investigative role of the SUDC team. Research is needed into the role of the key worker, potentially as a dedicated bereavement nurse, and understanding of families' experiences to ensure that support is optimal.
Quinn S; Dierckx E; Long T; Rowland AG
Comprehensive Child & Adolescent Nursing
2022
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<a href="http://doi.org/10.1080/24694193.2022.2047828" target="_blank" rel="noreferrer noopener">10.1080/24694193.2022.2047828</a>
An International Study of Caregiver-Reported Burden and Quality of Life in Metachromatic Leukodystrophy
Leukodystrophy Metachromatic/Genetics; Quality of Life/Psychology; Burden of illness; Caregiver burden; Caregiver experience; Caregivers; Child; Early-onset; Family; Humans; Juvenile; Late infantile; Metachromatic leukodystrophy; Mld; Quality of Life; Surveys and Questionnaires
BACKGROUND: Metachromatic leukodystrophy (MLD) is an autosomal recessive lysosomal disorder caused by mutations in the arylsulfatase A gene. Until now, there has been little information on the burden of MLD on patients and their caregivers. This multinational study aims to quantify caregiver-related impacts of MLD across several key domains including symptoms, treatment burden, time investment, social and emotional well-being, and professional and financial impact. RESULTS: Data were collected through moderator-assisted web survey and telephone interviews. The survey was developed with extensive input from clinical experts and MLD patient advocacy groups. The EQ-5D-5L questionnaire was administered during follow-up interviews. The total sample consisted of parents of MLD patients in the US (n = 10), France (n = 10), Germany (n = 6), UK (n = 5), Belgium (n = 1), and Norway (n = 2). The impact of MLD is evident from the EQ-5D-5L scores, which indicate utility values for caregivers below respective national population norms and a higher proportion of caregivers reporting problems with anxiety/depression. Time involved for care was demonstrated by a mean of 4.1 inpatient and 29.6 outpatient hospital visits in the previous 12-month period. These commitments place stress on familial relationships with 50% of caregivers reporting their child's MLD diagnosis had negatively impacted their relationship with their spouse/partner. Professionally, 76.5% of caregivers stopped working or switched to part-time employment following their child's MLD diagnosis, and most acknowledged caring for their child had affected their potential for career progression or promotion. Differences are also observed based on late infantile versus juvenile onset MLD, time since diagnosis, and for transplanted patients versus those who received palliative care only. CONCLUSIONS: This multinational study demonstrates that MLD consistently negatively affects many aspects of caregivers' lives including health, relationships, and professional status, irrespective of location. We expect that the results of this study are generalizable to other countries. This study enhances our understanding of MLD caregiver impacts, which could improve patient care and assist in identifying support for individuals with MLD and their families.
Sevin C; Barth M; Wilds A; Afriyie A; Walz M; Dillon A; Howie K; Pang F
Orphanet Journal of Rare Diseases
2022
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<a href="http://doi.org/10.1186/s13023-022-02501-8" target="_blank" rel="noreferrer noopener">10.1186/s13023-022-02501-8</a>
End of Life in Pediatrics. [French]
Child; Death; Family; Humans; Neoplasms; Neoplasms/th [Therapy]; Palliative Care; accompagnement; cancer; caregiving practice; parent; pediatric palliative care; pratique soignante; soins palliatifs pediatriques; support
When medicine proves to be powerless to cure a child suffering from cancer, there remains the path of accompaniment by what we call palliative care. This is very different from the treatments that have been administered up to now - since they are not intended to cure - and its main objective is to create a comfortable living environment, a warm and reassuring climate around the young patient and his family. Copyright © 2022. Published by Elsevier Masson SAS.
Malezieux ML
Soins, Pediatrie, Puericulture
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/10.1016/j.spp.2022.07.009" target="_blank" rel="noreferrer noopener">10.1016/j.spp.2022.07.009</a>
Reflecting on Palliative Care for Children, Young People and their Families: A Revised Model
adolescent; child; child wellbeing; family; human; palliative; palliative nursing; palliative therapy; partnership; reflective models; trials
The unique needs of children requiring palliative care and their families have been increasingly recognised on a global scale. The complexities of such care, the unpredictability of the illness trajectory and increased choice in terms of where care is provided has led to challenges for nurses/practitioners striving to provide optimal care for these families. Working in partnership with children and families and reflecting on practice are key issues in providing care and support. Reflective models are frequently used as a tool for two reasons: firstly, to reflect on practice with the aim of quality improvement; secondly, to help practitioners explore difficult or challenging aspects of care negotiated with families. Here, the authors report on a specialised model that has been developed and updated for use within children's palliative care. For reasons of confidentiality, a fictitious case study is used to illustrate how this model could be implemented during a debriefing session following the death of a child. While more research is needed, initial trials of the model by the authors suggests that using specialised reflective models and frameworks can help to facilitate such discussions in children's palliative care.
McNeilly P; McCloskey S; Peacock V; Price JE
International Journal of Palliative Nursing
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/10.12968/ijpn.2022.28.10.482" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2022.28.10.482</a>
Hope in the Uncertainties and Certainty for Parents of Children with Rare Neurological Disorders: Part 2 (Of 3): Certainty
Child; Disease Attributes; Family; Hope; Impact of Events Scale; Nervous System Diseases Therapy; Parents Psychosocial Factors; Scales; Uncertainty
This is the second of a three-part series that explores different aspects of uncertainty, certainty and hope in the context of providing clinical care for children with rare and life-limiting neurological disorders. When caring for families impacted by an overwhelming complex disorder in a child, complicated by threatening uncertainties and potentially more threatening certainties, clinicians utilise skills drawn from differing fields to make the load of information, and the emotional impact more manageable. The first article in this series addressed how clinicians might manage the 'accumulation of uncertainties' and to provide compassionate care not only to their patients, and their families, but also to themselves. This second paper delves into the less helpful aspects of 'certainty', including the associated losses and griefs endured by parents responding to threatening fears associated with their child's condition. In the extreme, disconnection and psychological isolation borne by parents can lead to a sense of hopelessness and desperation. Facing unwelcome certainties - clinicians and parents together - forms the basis of future trust and hope. Clinicians who share the field of trust with families and show commitment to helping parents, even when cure remains elusive, build a sense of hope. This is the sort of hopefulness that clinicians need to have and to offer as they share the journey with families. In this series, we seek to harness a shared approach to face unwelcome certainties and to kindle a sense of hope that is both credible and meaningful to the parents, family and clinician.
Nevin SM; Beavis E; Macintosh R; Palmer EE; Sachdev R; Le Marne FA; Bye AME; Nunn K
Journal of Paediatrics and Child Health
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/10.1111/jpc.16202" target="_blank" rel="noreferrer noopener">10.1111/jpc.16202</a>
What Does the Best Interests Principle of the Convention on the Rights of the Child Mean for Paediatric Healthcare? [Review]
Best interests principle; Child; Children's rights; Convention on the Rights of the Child; Decision Making; Delivery of Health Care; Family; HIV Infections; Human Rights; Human rights in paediatrics; Humans; Paediatric ethics; Shared decision-making; United Nations
The present review analyses the implications of the best interests of the child principle, which is one of the most widely discussed principles of medical ethics and human rights, for paediatric healthcare. As a starting point, it presents the interpretation of the best interests principle by the United Nations Committee on the Rights of the Child. On this basis, it points out possible fields of application of the best interests principle with regard to paediatric healthcare and discusses the potential difficulties in the application of the best interests principle. Based on this, it illustrates the implications of the best interests principle for paediatric healthcare through four case studies, which look at ethical dilemmas in paediatric gynaecology, end-of-life care, HIV care and genetic testing. Conclusion: The best interests principle requires action, inter alia, by health policymakers, professional associations, hospital managers and medical teams to ensure children receive the best possible healthcare. Whilst the best interests principle does not provide a conclusive solution to all ethical dilemmas in paediatric healthcare (as illustrated by the case studies), it provides children, medical teams, parents and families, and clinical ethicists with an indispensable framework for health care centred on the rights of the child. What is Known: * The best interests principle is one of the most widely discussed principles of medical ethics and human rights and one of the four general principles of the Convention on the Rights of the Child. What is New: * The present review discusses possible fields of application and potential difficulties of the best interests principle with regard to paediatric healthcare. * Based on this, it illustrates the implications of the best interests principle for paediatric healthcare through four case studies, which look at ethical dilemmas in paediatric gynaecology, end-of-life care, HIV care and genetic testing. Copyright © 2022. The Author(s).
Marz JW
European Journal of 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/10.1007/s00431-022-04609-2" target="_blank" rel="noreferrer noopener">10.1007/s00431-022-04609-2</a>
Expressing Condolences to a Family after the Death of a Child #443
Bereavement; Child; Death; Family; Humans
Background The origins of the word condolence stem from Latin roots: com ‘together,” and dolere, “to grieve”. Parents grieving the death of their child benefit from condoling words and actions of those around them. Grieving the death of a child differs from other types of bereavement, as children are not meant to precede their parents in death, particularly in modern times. Thus, words of condolence should account for the ground-shattering change experienced within the family’s life. Meaningful, personal, and compassionate letters of condolence can be both a tribute to the child who died and a source of comfort to the parents. Fast Fact #22 discusses condolence letters for the general population.
Wiener L; Lichtenthal W; Weaver MS
Journal of Palliative Medicine
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/10.1089/jpm.2022.0252">10.1089/jpm.2022.0252</a>
Factors that Contribute to Bereaved Parents' Perceptions of Neonatal Palliative Care: A Systematic Literature Review
infant; review; guideline; neonatal; newborn; parent; experience; family; quality; satisfaction; palliative; Reviews; human; article; female; male; perception; psychological; therapy; practice; care; Reporting; intensive; unit; and; for; Items; Meta-Analyses; Preferred; systematic; Systematic; analysis; meta; units
OBJECTIVES: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families play a integral role in the decision-making process for their infant, but their experiences with and perceptions of the support and care provided to them via NPC is unclear to health professionals. This literature review summarizes the state of knowledge on parents' perspectives of NPC while focusing on the specific factors that influence their experiences and satisfaction with NPC. METHOD(S): A systematic literature review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Articles published in peer-reviewed journals between January 2010 and January 2021 that investigated parents' perceptions of neonatal palliative care either as their central topic or as a sub-topic as part of a larger focus. RESULT(S): A total of 16 articles (N = 16) were included in this review. Three overarching themes encompass the findings of the literature review: parent-clinician interactions, parent-infant interactions, and parent-self interactions. Within these themes, topics such as consistent and clear communication, involvement in care decisions, and social and psychological support were explored. CONCLUSION(S): Clinicians must focus on these important quality indicators to ensure they provide the best care possible to the patients and families that they serve. Further research must be done to investigate parent satisfaction and needs in relation to NPC more deeply and to develop more supportive interventions and protocols.
Hamel M N; Beltran SJ
American Journal of Hospice 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/10.1177/10499091221113277">10.1177/10499091221113277</a>
How doctors manage conflicts with families of critically ill patients during conversations about end-of-life decisions in neonatal, pediatric, and adult intensive care
child; human; female; male; article; adult; newborn; responsibility; conversation; family; morality; uncertainty; emotion; conflict; conflict; health; research; literacy; management; patient; clinical; genetic; qualitative; care; ill; intensive; unit; decision; making; clinical; critically; intensive; transcription
Purpose Intensive care is a stressful environment in which team-family conflicts commonly occur. If managed poorly, conflicts can have negative effects on all parties involved. Previous studies mainly investigated these conflicts and their management in a retrospective way. This study aimed to prospectively explore team-family conflicts, including its main topics, complicating factors, doctors’ conflict management strategies and the effect of these strategies. Methods Conversations between doctors in the neonatal, pediatric, and adult intensive care unit of a large university-based hospital and families of critically ill patients were audio-recorded from the moment doubts arose whether treatment was still in patients’ best interest. Transcripts were coded and analyzed using a qualitative deductive approach. Results Team-family conflicts occurred in 29 out of 101 conversations (29%) concerning 20 out of 36 patients (56%). Conflicts mostly concerned more than one topic. We identified four complicating context- and/or family-related factors: diagnostic and prognostic uncertainty, families’ strong negative emotions, limited health literacy, and burden of responsibility. Doctors used four overarching strategies to manage conflicts, namely content-oriented, process-oriented, moral and empathic strategies. Doctors mostly used content-oriented strategies, independent of the intensive care setting. They were able to effectively address conflicts in most conversations. Yet, if they did not acknowledge families’ cues indicating the existence of one or more complicating factors, conflicts were likely to linger on during the conversation. Conclusion This study underlines the importance of doctors tailoring their communication strategies to the concrete conflict topic(s) and to the context- and family-related factors which complicate a specific conflict.
Spijkers A S; Akkermans A; Smets EMA; Schultz MJ; Cherpanath TGV; van Woensel JBM; van Heerde M; van Kaam AH; van de Loo M; Willems DL; de Vos MA
Intensive Care Medicine
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/10.1007/s00134-022-06771-5" target="_blank" rel="noreferrer noopener">10.1007/s00134-022-06771-5</a>
Family Experiences with Palliative Care in Freestanding Paediatric Hospices: A Scoping Review
Bereavement; Pediatrics; Family; Scoping review; Hospice care; Terminal care
BACKGROUND: Paediatric palliative care provides supportive care to children with life-threatening or life-limiting illnesses throughout the disease trajectory. Up to 42% of children receiving palliative care in Canada will die within a freestanding paediatric hospice or designated end-of-life care bed. Few studies have assessed families' experiences of this care within freestanding paediatric hospices. OBJECTIVES: To find and describe literature relating to family experiences in paediatric hospice palliative care throughout the end-of-life care journey including grief and bereavement. CRITERIA: Inclusion criteria: Children antepartum to 18 years or older if on paediatric palliative care service. Research conducted in freestanding paediatric hospices that focused on families' experiences and perceptions of end-of-life and grief and bereavement care. Full-text articles available in English. EXCLUSION CRITERIA: Adult palliative and end-of-life care, respite care, palliative care provided in acute or community settings, professional perspectives, unexpected or sudden child death, pregnancy after loss. SOURCES OF EVIDENCE: Academic Search Complete, CINAHL, Cochrane Database of Systematic Reviews, Embase, PsycINFO, PubMed and Web of Science databases were searched from database inception until the present. Grey literature was also searched for relevant results. CHARTING METHODS: The scoping review was guided by recommendations from Arksey and O'Malley and Levac et al. RESULTS: A total of 4250 papers were retrieved, of which 10 met the scoping review criteria. The majority of studies were conducted in the UK. Three major themes emerged: more supportive care for families including grief and bereavement support, the hospice experience itself and future research areas. CONCLUSIONS: There is little literature that focuses specifically on the needs of families within freestanding paediatric hospices. Further examination of the themes identified above provides an opportunity for future research.
Dorman J; Raffin BS; daSilva CK; Miller M
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-2021-003457" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003457</a>
Assessment of an Instrument to Measure Interdisciplinary Staff Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit
Humans; Infant; Cross-Sectional Studies; Female; Male; Child; Intensive Care Units, Pediatric; Family; Death; Terminal Care
IMPORTANCE: Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children and families at end of life. OBJECTIVES: To evaluate the Pediatric Intensive Care Unit Quality of Dying and Death (PICU-QODD) instrument and examine differences between disciplines and end-of-life circumstances. DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional survey included staff at a single center involved in pediatric CICU deaths from July 1, 2019, to June 30, 2021. EXPOSURES: Staff demographic characteristics, intensity of end-of-life care (mechanical support, open chest, or cardiopulmonary resuscitation [CPR]), mode of death (discontinuation of life-sustaining therapy, treatment limitation, comfort care, CPR, and brain death), and palliative care involvement. MAIN OUTCOMES AND MEASURES: PICU-QODD instrument standardized score (maximum, 100, with higher scores indicating higher quality); global rating of quality of the moment of death and 7 days prior (Likert 11-point scale, with 0 indicating terrible and 10, ideal) and mode-of-death alignment with family wishes. RESULTS: Of 60 patient deaths (31 [52%] female; median [IQR] age, 4.9 months [10 days to 7.5 years]), 33 (55%) received intense care. Of 713 surveys (72% response rate), 246 (35%) were from nurses, 208 (29%) from medical practitioners, and 259 (36%) from allied health professionals. Clinical experience varied (298 [42%] ≤5 years). Median (IQR) PICU-QODD score was 93 (84-97); and quality of the moment of death and 7 days prior scores were 9 (7-10) and 5 (2-7), respectively. Cronbach α ranged from 0.87 (medical staff) to 0.92 (allied health), and PICU-QODD scores significantly correlated with global rating and alignment questions. Mean (SD) PICU-QODD scores were more than 3 points lower for nursing and allied health compared with medical practitioners (nursing staff: 88.3 [10.6]; allied health: 88.9 [9.6]; medical practitioner: 91.9 [7.8]; P < .001) and for less experienced staff (eg, <2 y: 87.7 [8.9]; >15 y: 91, P = .002). Mean PICU-QODD scores were lower for patients with comorbidities, surgical admissions, death following treatment limitation, or death misaligned with family wishes. No difference was observed with palliative care involvement. High-intensity care, compared with low-intensity care, was associated with lower median (IQR) rating of the quality of the 7 days prior to death (4 [2-6] vs 6 [4-8]; P = .001) and of the moment of death (8 [4-10] vs 9 [8-10]; P =.001). CONCLUSIONS AND RELEVANCE: In this cross-sectional survey study of CICU staff, the PICU-QODD showed promise as a reliable and valid clinician measure of quality of dying and death in the CICU. Overall QODD was positively perceived, with lower rated quality of 7 days prior to death and variation by staff and patient characteristics. Our data could guide strategies to meaningfully improve CICU staff well-being and end-of-life experiences for patients and families.
Bailey V; Beke DM; Snaman JM; Alizadeh F; Goldberg S; Smith-Parrish M; Gauvreau K; Blume ED; Moynihan KM
JAMA Network Open
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1001/jamanetworkopen.2022.10762" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2022.10762</a>