"What about me?": lived experiences of siblings living with a brother or sister with a life-threatening or life-limiting condition
Humans; Parents; Child; child; Male; Attention; Emotions; sibling; life-threatening condition; Adaptation Psychological; life-limiting condition; paediatric palliative care; lived experience; Siblings; Hermeneutics
BACKGROUND: There is a lack of knowledge regarding siblings' experiences of being a brother or sister of a child with a life-threatening or life-limiting condition. Siblings' perspectives are often expressed through their parents and not by siblings themselves. METHOD: This study has a qualitative design within hermeneutic phenomenology. Thirteen siblings (ages 3-29) of children with cancer or genetic conditions participated in semi-structured interviews. Analyses followed a thematic analysis guided by van Manen's lifeexistentials. RESULTS: One overall theme, "What about me?", illustrates that siblings of children with LT/LL conditions are dealing with their own challenges and needs in the situation while also struggling to receive attention from their parents. The overall theme derives from three subthemes: living with heavy strains, feeling disregarded, and having needs of one's own. CONCLUSION: The study revealed that siblings' own needs compete with the needs of the ill child, resulting in the risk of siblings taking a step back rather than expressing what they might actually need themselves. These findings can inform healthcare professionals on the importance of educating and supporting parents and the surrounding community close to the sibling, for example, by helping schoolteachers understand how to meet siblings' needs.
Kittelsen TB; Castor C; Lee A; Kvarme LG; Winger A
International Journal of Qualitative Studies on Health and Well-being
2024
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/17482631.2024.2321645" target="_blank" rel="noreferrer noopener">10.1080/17482631.2024.2321645</a>
Grieving Parents' Meaning-Making Narration in Relation to Value Orientations: A Cross-Cultural Study
Parents; Female; Descriptive Statistics; Human; Adult; Male; Reflection; Complicated Grief; Comparative Studies; Psychosocial Factors; Life Experiences; Parent-Child Relations; Evaluation; Middle Age; Narratives; Autobiographical Memory; Chinese Persons; Cultural Values; Ethnological Research; Life Purpose; Scales; Self Assessment; Self Report; Swiss Persons
This study investigated the association between prolonged grief (PG) severity and meaning-making narration in a cross-cultural context, and specifically aimed to illustrate the role of value orientation in shaping the grieving process. 30 Chinese and 22 Swiss parents who lost their child were asked to narrate and appraise specific memories to reflect their self-evaluation of traditional and modern values. The self-reported Prolonged Grief Disorder Scale (ref ICD-11) assessed PG severity. Compared with the Swiss sample, the Chinese sample provided more elaborated memories, which was not associated with symptom severity. Both Chinese and Swiss bereaved parents with more severe PG provided more narratives of loss-related memories, particularly in response to modern values. They also provided more appraisals of negative meanings for self-defining memories, particularly in relation to their traditional values. These findings indicate that, despite cultural differences in narration tendency, PG severity in bereaved parents was associated with the maladaptive integration of autobiographical memories across different cultures, in relation to value orientations. A clinical implication is the potential value of facilitating narrations of grieving clients that center on value orientations to mitigate the hardship of the personal loss.
Xiu D; Maercker A; Killikelly C; Yang Y; Jia X
Transcultural Psychiatry
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1363461520970735%5C">10.1177/1363461520970735\</a>"
Shared decision-making in pediatric palliative care
Parents; End-of-life care; Palliative care; Shared decision-making
Shared decision-making (SDM) with parents and adolescents is normative in pediatric practice in North America. In this article we discuss how it is applicable to the practice of pediatric palliative care (PPC). As PPC itself is exemplary of patient-and-family-centered care, it often uses a SDM approach in clarifying patient and family preferences, goals, and values. This often occurs in an iterative process and across care environments, wherein the patient and family narrative is elaborated. Decisions are then made incorporating both evidence-based medical practice and the unique attributes and considerations of the patient and family.
Stroh JT; Carter BS
Current Problems in Pediatric and Adolescent Health 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/10.1016/j.cppeds.2023.101551" target="_blank" rel="noreferrer noopener">10.1016/j.cppeds.2023.101551</a>
Parents' hope in perinatal and neonatal palliative care: a scoping review
Parents; Human; Funding Source; Psychosocial Factors; Coping; Critical Illness; Palliative Care; Parental Attitudes; Uncertainty; Autonomy; CINAHL Database; Hope; Intensive Care Neonatal; Interpersonal Relations; Medline; Parenthood; Perinatal Care; Perinatal Period; Psycinfo; Scoping Review
Background: The diagnosis of a life-limiting condition of a child in the perinatal or neonatal period is a threat to parental hopes. Hope is an interactional and multidimensional construct, and in palliative care, it is a determinant of quality of life, survival, acceptance and peaceful death. Objective: To map scientific evidence on parents' hope in perinatal and neonatal palliative care contexts. Method: a scoping review theoretically grounded on Dufault and Martocchio's Framework, following the Joanna Briggs Institute methodological recommendations. Searches were performed until May 2023 in the MEDLINE, CINAHL and PsycINFO databases. The searches returned 1341 studies. Results: Eligible papers included 27 studies, most of which were carried out in the United States under a phenomenological or literature review approach. The centrality of women's perspectives in the context of pregnancy and perinatal palliative care was identified. The parental hope experience is articulated in dealing with the uncertainty of information and diagnosis, an approach to which interaction with health professionals is a determinant and potentially distressful element. Hope was identified as one of the determinants of coping and, consequently, linked to autonomy and parenthood. Cognitive and affiliative dimensions were the hope dimensions that predominated in the results, which corresponded to the parents' ability to formulate realistic goals and meaningful interpersonal relationships, respectively. Conclusion: Hope is a force capable of guiding parents along the path of uncertainties experienced through the diagnosis of a condition that compromises their child's life. Health professionals can manage the family's hope by establishing sensitive therapeutic relationships that focus on the dimension of hope. The need for advanced research and intervention in parental and family hope are some of the points made in this study.
Silveira AO; Wernet M; Franco LF; Dias PLM; Charepe Z
BMC Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-023-01324-z%5C">10.1186/s12904-023-01324-z\</a>"
"You're on a Rollercoaster, Just Hold On": The Lived Experience of the Dyad Following a Fetal Death
Parents; Descriptive Statistics; Human; Thematic Analysis; Qualitative Studies; Bereavement; Psychological Distress; Psychosocial Factors; United States; Coping; Life Experiences; Semi-Structured Interview; Grief; Phenomenological Research; Anticipatory Grieving; Canada; Loneliness; Nursing Role; Parental Behavior; Perinatal Death; Social Isolation; Spiritual Healing
Purpose: Pregnancy and birth is often a joyous period for a dyad. In the instance of fetal death, however, dyads are met with a devastating loss of their child, the hope for the future, and the new reality of becoming a bereaved parent. The purpose of this qualitative study was to investigate the lived experience of the dyad following a fetal death and capture the essence of the grief journey. Study design and methods: A hermeneutic phenomenological study was performed using van Manen's method for data collection and analysis. Semi-structured interviews were conducted via Zoom. Participants were recruited from national and local agencies providing education and resources about perinatal loss. Data analysis utilized the Dedoose software platform to track qualitative coding. Results: Ten dyads (20 individuals) from the United States and Canada participated. The data revealed four major themes with several subthemes. The major themes were as follows: "The child I'll never really know": Pregnancy loss grief; "You're on a rollercoaster, just hold on": The emotional journey; Climbing uphill: Barriers to healing; and Resurfacing from grief: Healing after loss Clinical implications: The death of a fetus over 20 weeks gestation provides a unique experience of grief. The findings support the need for additional resources needed beyond the hospital by nurses or other providers to facilitate healing and minimize complicated grief. Furthermore, the findings support the need for increasing awareness among healthcare providers and peers about how to communicate and care for dyads experiencing fetal death.
McDonough MR; Leone-Sheehan D
Research and Theory for Nursing 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/10.1891/rtnp-2023-0037%5C">10.1891/rtnp-2023-0037\</a>"
Barriers to the spiritual care of parents taking care of their child with a life-limiting condition at home
Parents; Palliative care; Grief; Spirituality; Child care; Focus groups
The changes that parents face when caring for a child with a life-limiting condition at home can affect them on a spiritual level. Yet, indications remain that parents do not feel supported when dealing with spiritual issues related to caring for a severely ill child. This paper explores, from the perspectives of bereaved parents, chaplains, grief counselors, and primary health care providers, the barriers to supporting the spiritual needs of parents. We conducted a qualitative focus group study from a constructivist point with chaplains/grief counselors, primary care professionals, and bereaved parents. All groups participated in two consecutive focus group sessions. Data were thematically analyzed. Six chaplains/grief counselors, 6 care professionals, and 5 parents participated. We identified six barriers: (1) There were difficulties in identifying and communicating spiritual care needs. (2) The action-oriented approach to health care hinders the identification of spiritual care needs. (3) There is an existing prejudice that spiritual care needs are by nature confrontational or difficult to address. (4) Spiritual support is not structurally embedded in palliative care. (5) There is a lack of knowledge and misconceptions about existing support. (6) Seeking out spiritual support is seen as too demanding. CONCLUSION: Parents of children with life-limiting conditions face existential challenges. However, care needs are often not identified, and existing support is not recognized as such. The main challenge is to provide care professionals and parents with the tools and terminology that suit existing care needs. WHAT IS KNOWN: • Spiritual care needs are an important aspect of pediatric palliative care. • Parents of children with life-limiting conditions feel unsupported when dealing with spiritual questions. WHAT IS NEW: • Parents and professionals mention barriers that hinder spiritual support for parents. • There is a disconnect between existing support and the care needs that parents have.
Brouwer MA; Bas-Douw BC; Leget CJW; Engel M; Teunissen Sccm; Kars MC
European Journal of Pediatrics
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00431-023-05314-4" target="_blank" rel="noreferrer noopener">10.1007/s00431-023-05314-4</a>
Social support and prolonged grief disorder symptoms in parents who lost their only child from urban and rural China
Parents; Grief; social support; China; Social Support; Symptoms; International Classification of Diseases; Only Children; parents who lost their only child (shiduers); prolonged grief disorder (PGD); Rural Environments; urban/rural area
Objective: The one-child policy has existed in China for more than 30 years. It brought benefits to the country's economic development and reduced the magnitude of the population within a short period. However, it has led to the emergence of a significant number of parents who have lost their only child, referred to as shiduers (失独者). This study explored the symptoms of prolonged grief disorder (PGD) among shiduers and their relationship with the social support shiduers received after they lost the child, specifically accounting for the disparity between rural and urban areas. Method: In total, 405 participants were recruited with a mean age of 60.37 years (SD = 7.78). Around 68.75% were female, and 58.66% were urban shiduers. They were asked to complete a series of self-reported questionnaires, including demographic information, the Social Support Rate Scale, and the Prolonged Grief-13. Results: First, 29.63% of the participants (N = 120) fulfilled the International Classification of Diseases (11th rev.) diagnostic criteria for PGD symptoms; second, PGD symptoms of shiduers were negatively related to social support, including objective support, subjective support, and the availability of support; and third, urban/rural location moderated the effect of objective support on the PGD symptoms of shiduers, but not the effect of subjective support on PGD symptoms. Furthermore, the simple-slope tests indicated that the shiduers in rural areas benefited most from objective support. Conclusions: The present results revealed high rates of PGD symptoms in Chinese shiduers, and our findings highlight the important role of urban/rural location in the relationship between social support and PGD symptoms. (PsycInfo Database Record (c) 2023 APA, all rights reserved) This study could help government leaders and primary health care workers to create targeted programs for shiduers in the future, especially those living in rural areas. (PsycInfo Database Record (c) 2023 APA, all rights reserved)
Song C; Fu Z; Li W; Yu Y; Ma J; Li X; Wang J
Psychological Trauma: Theory, Research, Practice, and Policy
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/10.1037/tra0001116" target="_blank" rel="noreferrer noopener">10.1037/tra0001116</a>
“It's Hard Not to Have Regrets:” Qualitative Analysis of Decisional Regret in Bereaved Parents
Parents; child; Bereavement; pediatric cancer; parent; bereavement; decisional regret
Context Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement. Objectives We characterized decisional regrets endorsed by parents of children who died from cancer within the first two years of their bereavement. Methods We analyzed responses from a cross-sectional, dual site study of parents 6 to 24 months from their child's death. Parents indicated whether they had regrets about decisions made at the end of their child's life (yes/no/I don't know) and elaborated with free text. We used content analysis to identify recurrent categories in parents’ responses. Results A total of 125 parents of 88 children completed the survey; 123 responded to the decisional regret item and 84 (63%) elaborated with free text. Forty-seven (38%) parents reported decisional regret(s), 61 (50%) indicated no regret(s), and 15 (12%) were unsure. Parental free-text responses related to 5 categories: treatments, including those pursued and/or not pursued (n=57), decision-making processes (n=35), relationships with their child and care team (n=26), child suffering (n=10), and end-of-life characteristics (n=6). The relative frequency of categories was similar in parents with and without decisional regret, but self-blame was more common in responses from parents with decisional regret. Conclusion Many bereaved parents endorse decisional regret in early bereavement. Treatments and decision-making processes were most cited among parents both with and without regret. Identifying factors associated with heightened parental risk of decisional regret using longitudinal study is an important focus of future research.
Feifer D; Broden E; Baker JN; Wolfe J; Snaman J
Journal of Pain and Symptom Management
2023
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.144" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.144</a>
Existential experiences and perceptions of death among children with terminal cancer: An interpretative qualitative study
Humans; Parents; Child; Palliative Care; Quality of Life; Qualitative Research; Neoplasms; Only Child; Terminal Care; Death
BACKGROUND: Exploring the experience and understanding of death in children with terminal cancer is important to provide them with appropriate care. However, most studies have focused on the perspectives of parents and healthcare professionals, and few have focused on the end-of-life experiences of children., AIM: To advance the understanding of end-of-life experiences and perceptions of death in children with cancer., DESIGN: Interpretative qualitative study using semi-structured interviews. Data were analyzed using reflexive thematic analysis., SETTING/PARTICIPANTS: The study was conducted at the department of oncological surgery, Children's Hospital, Zhejiang University School of Medicine. Ten children aged 8-17 with terminal cancer were included in the study., RESULTS: Four major themes (and eight sub-themes) were identified from the findings: (1) helplessness in the face of death (loneliness, loss of control); (2) desire to connect with the world they left (reluctantly to be forgotten, sense of self-worth); (3) perceptions and attitudes toward death (separating from loved ones, embracing death); (4) expectations of future life (promoting comfort, fulfilling wishes)., CONCLUSIONS: Children with terminal cancer have a strong sense of loneliness and a desire to connect with the world they have left behind. Differences in children's perceptions and attitudes about death suggest that healthcare professionals should focus on their experiences and needs and provide personalized palliative care services to children and their families to improve their quality of life.
Lin N; Lv D; Hu Y; Zhu J; Xu H; Lai D
Palliative Medicine
2023
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<a href="http://doi.org/10.1177/02692163231165100" target="_blank" rel="noreferrer noopener">10.1177/02692163231165100</a>
A Systematic Review of Educational Interventions to Equip Health and Social Care Professionals to Promote End-of-Life Supportive Care when a Parent with Dependent Children is Dying with Cancer
Parents; Children; End of life; Cancer; Family-centered care; Systematic review
OBJECTIVES: This systematic review aimed to determine the content, mode of delivery, assessment, and outcomes of educational interventions to equip health and social care professionals (HSCPs) when delivering end-of-life (EoL) supportive care for parents dying with cancer who have dependent children. DATA SOURCES: The review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A search strategy was developed with assistance of subject librarians and peer-reviewed using the Peer Review of Electronic Search Strategies tool. A search of MEDLINE OVID, CINAHL, EMBASE, PsycINFO, Web of Science, and ERIC electronic databases and gray literature was conducted. Quality assessment was conducted on included studies. Data synthesis was conducted using a convergent integrated approach. CONCLUSION: The review identified just two educational interventions, highlighting the dearth of educational interventions available to HSCPs to provide supportive care to families when a parent is at EoL with cancer. The identified interventions were of good methodological quality and were positively evaluated by participants, enhancing their confidence to engage in EoL conversations. It is imperative that interventions that use robust evaluation methods are developed and made accessible to HSCPs. IMPLICATIONS FOR NURSING PRACTICE: The review highlights the urgent need for the development of interventions for HSCPs to provide supportive care to families when a parent is at EoL with cancer. This is a fundamental aspect of care, and it is imperative that accessible educational interventions are developed to improve the quality of care and reduce distress for patients and their families.
Sheehan S; Hanna JR; Drury A; McCance T; Semple CJ; O'Neill C
Seminars in Oncology Nursing
2023
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<a href="http://doi.org/10.1016/j.soncn.2023.151474" target="_blank" rel="noreferrer noopener">10.1016/j.soncn.2023.151474</a>
Protective and risk factors in the grieving process among cancer-bereaved
Parents; Female; Male; Risk Factors; Attitude to Death; Neoplasms; Quality of Life; Bereavement; Grief; Qualitative Studies; Human; Support Psychosocial; Thematic Analysis; Funding Source
This Norwegian nationwide study explored cancer-bereaved parents'
Rasouli O; Øglænd IS; Reinfjell T; Eilertsen MEB
Death Studies
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/10.1080/07481187.2022.2142324" target="_blank" rel="noreferrer noopener">10.1080/07481187.2022.2142324</a>
Consulting parents bereaved by childhood cancer: A qualitative study to improve bereavement services
Parents; Bereavement; Communication; Interviews; Referral and Consultation; Qualitative Studies; Empathy; Human; Thematic Analysis; Childhood Neoplasms; Patient Care; Psychosocial Factors
Twelve Australian parents bereaved by childhood cancer were interviewed
Loxton I; Oxlad M; Perry A
Death Studies
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/10.1080/07481187.2022.2142325" target="_blank" rel="noreferrer noopener">10.1080/07481187.2022.2142325</a>
Fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options: A qualitative systematic review
Child; child; palliative care; male; life-limiting conditions; Only Child; qualitative research; parents; paediatric palliative care; hospice and palliative nursing; fathers; family-centred care
AIM: To systematically review and synthesize findings across qualitative primary studies about fathers' experiences of living with a child with a progressive life-limiting condition without curative treatment options (C3 conditions). DESIGN: Systematic review and metasynthesis. METHODS: Sandelowski and Barosso's qualitative research methodology guided this review and metasynthesis. A modification of Ricoeur's interpretation theory, described by Lindseth and Norberg, guided the synthesis of qualitative data. The quality of the studies was evaluated using the Joanna Briggs Institute Checklist for Qualitative Research. DATA SOURCES: A systematic literature search was conducted on 6 May 2022 and updated on 19 July 2023 on MEDLINE, CINAHL Plus with Full Text, APA PsycInfo and Scopus. Inclusion criteria were English-written qualitative studies from the year 2000, from which we could extract data on fathers' experiences of living with a child from 0 to 18 years with a progressive life-limiting condition without curative treatment options. RESULTS: Seven reports from Western countries contributed to the review. Through structural analysis, we developed the following themes: 'Being shattered in the perception of fatherhood', 'Establishing a new normal' and 'Striving to be acknowledged as a part of the caring team'. CONCLUSION: Fathers had to establish a new normal, and they experienced anticipatory mourning, role conflicts and feeling sidelined in healthcare settings when living with a child with a C3 condition. An important issue for further research on paediatric palliative care (PPC) should be to include fathers in the research sample and report separately on fathers' or mothers' experiences instead of parents' experiences. IMPACT: The findings will be of interest to healthcare personnel and multidisciplinary teams working within PPC, as they give insight into fathers' experiences and suggest interventions to increase healthcare personnel's involvement with fathers, such as telemedicine. REPORTING METHOD: Following EQUATOR guidelines, the study was reported according to the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) framework. PATIENT OR PUBLIC CONTRIBUTION: No patient or Public Contribution.
Sjuls M; Ludvigsen MS; Robstad N; Fegran L
Journal of Advanced Nursing
2023
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<a href="http://doi.org/10.1111/jan.15884" target="_blank" rel="noreferrer noopener">10.1111/jan.15884</a>
Parental perspectives on the clinician's approach to serious illness communication: A qualitative study
Parents; Children; Palliative care; Communication; Qualitative research; Serious illness
OBJECTIVES: To explore the perceptions of parents caring for a child with a life-limiting condition on approaches to communication used by clinicians engaging in routine serious illness communication. METHODS: An exploratory qualitative design was used, employing a thematic analysis of data derived through semi-structured interviews which presented hypothetical vignettes of serious illness conversations to elicit parental perspectives. Adult parents of children with a life-limiting condition, in a stable phase of care, known to the Neurodevelopment and Disability Department of a tertiary Children's Hospital in Melbourne, Australia, were purposively sampled to achieve a broad representation of relevant clinical and sociodemographic factors. RESULTS: Eleven parents (72% female) of children aged 7 months to 18 years participated. Two major themes characterized parental perspectives on serious illness communication: "Approaches clinicians can use to lay the foundation for quality communication" including checking in, validation, aligning with hopes and a commitment to listening and being present; and "Approaches clinicians can use to aid the delivery of information" including honesty and compassion, presenting possibilities, providing a plan, and conveying the clinician's experience. SIGNIFICANCE OF RESULTS: This study provides novel insights into the perspectives of parents of children with life-limiting conditions that inform how clinicians may best approach serious illness communication. The findings highlight the need for clinicians working in pediatric health care to be cognizant of parents' needs before and during conversations. Laying the foundation for quality communication is important alongside the approaches outlined that aid in the delivery of information.
Mills N; Chapman M; Sutherland I; Gillam L; Collins A
Palliative and Supportive 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/10.1017/s1478951523001153" target="_blank" rel="noreferrer noopener">10.1017/s1478951523001153</a>
The Quality of Life of Children Facing Life-Limiting Conditions and That of Their Parents in Belgium: A Cross-Sectional Study
Belgium; Quality of Life; outcomes; quality of life; Cross-Sectional Studies; life-limiting conditions; parents; paediatric palliative care; Cesarean Section; children’s palliative outcome scale (CPOS-2); patient-centred outcome measures
BACKGROUND: Paediatric palliative care (PPC) aims to improve children's quality of life, but this outcome is rarely measured in clinical care. PPC is provided in Belgium through six transmural paediatric liaison teams (PLTs) ensuring continuity of care for children with life-limiting or life-threatening conditions (LLC/LTC). This study aims to measure the quality of life (QoL) of children with LLC/LTC followed-up by PLTs and the QoL of their parents. METHODS: During interviews, an original socio demographic questionnaire, the Children palliative outcome scale-version 2 (CPOS-2), the Fragebogen für Kinder und Jugendliche zur Erfassung der gesundheitsbezogenen Lebensqualität (KINDL) and the Quality of life in life-threatening Illness-Family caregiver (QOLLTI-F) were filled in by PLT members. Statistics were used to investigate significant differences between scores. Results were discussed and interpreted with six PLTs. RESULTS: 73 children aged 1-18 were included in the study. Especially for items focusing on emotional items, children reported their QoL as higher than their parents did. The QoL scores were not significantly associated with the child's condition's severity. CONCLUSIONS: This study provides, for the first time, an overview of the QoL of children and parents followed-up by PLTs in Belgium.
Friedel M; Aujoulat I; Brichard B; Fonteyne C; Renard M; Degryse JM
Children
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children10071167" target="_blank" rel="noreferrer noopener">10.3390/children10071167</a>
The dignity of terminally ill children in pediatric palliative care: perspectives of parents and healthcare providers
Humans; Parents; Child; Palliative Care; Adult; Qualitative Research; Health Personnel; Palliative Care; Terminally Ill; Terminally Ill; Terminally ill children; Dignity; Mainland China; Pediatric Palliative care; Respect
BACKGROUND: The Chochinov Dignity Model was developed based on a cohort of adult patients with advanced cancer, but its role among dying children is not clear. This study aims to develop a model of dignity for children receiving pediatric palliative care based on the Chochinov Dignity Model. METHODS: This is a descriptive qualitative study. Participants included a total of 11 parents and 14 healthcare providers who were recruited from a tertiary children's hospital in Beijing and the Pediatric Palliative Care Subspecialty Group of the Pediatrics Society of the Chinese Medical Association using purposive sampling. Thematic framework analysis was used to analyze data. RESULTS: The themes of the empirical Dignity Model were broadly supported in this study, but some themes were interpreted differently in the child population. Compared with the original model, some child-specific themes were identified including acknowledging regret, a sense of security, the company of important loved ones, realizing unfinished wishes, decent and dignified death, resolving family disputes, and fairness. CONCLUSIONS: This is the first study on Dignity Model for terminal children. Knowledge of children's dignity can promote reflection of healthcare providers and caregivers regarding the values underlying their performance in pediatric palliative care, and develop certain practical interventions to strengthen children and their families' sense of dignity at end of life.
Cai S; Guo Q; Lin J; Deng C; Li H; Zhou X
BMC Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-023-01206-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01206-4</a>
Crossroads of parental decision making: Intersections of hope, communication, relationships, and emotions
Humans; Infant; Decision Making; Communication; Qualitative Research; Uncertainty; Emotions; Parents; Parents/px [Psychology]; Decision Making
Parents of children born with complex life-threatening chronic conditions (CLTCs) experience an uncertain trajectory that requires critical decision making. Along this trajectory, hope plays an influential but largely unexplored role; therefore, this qualitative descriptive study explores how parent and provider hope may influence decision making and care of a child born with CLTCs. A total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making. Overall, parental hope remained strong and played a pivotal role in parental decision making. Parents and professional healthcare providers expressed a range of emotions that appeared to be integrally linked to hope and affected decision making. Providers and parents brought their own judgments, perceptions, and measure of hope to relationships, when there was common ground for expressing, and having, hope, shared decision making was more productive and they developed more effective relationships and communication. Relationships between parents and providers were particularly influenced by and contributory to hope. Communication between parents and providers was also responsible for and responsive to hope.
Koch A; Albrecht T; Kozhumam AS; Son H; Brandon D; Docherty SL
Journal of Child Health 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/10.1177/13674935211059041" target="_blank" rel="noreferrer noopener">10.1177/13674935211059041</a>
Fatal fetal anomaly: Experiences of women and their partners
Humans; Female; Male; Palliative Care; Quality of Health Care; Qualitative Research; Adaptation, Psychological; Pregnancy; Parents; Grief
OBJECTIVE: This study explored the care experiences of parents whose pregnancy was diagnosed with a fatal fetal anomaly following the legalisation of termination of pregnancy in 2019 in Ireland., METHODS: A qualitative study using in-depth semi-structured interviews and interpretative phenomenological analysis was undertaken. Purpose ful sampling was used to recruit 10 parents, six women and four of their male partners. Parents recruited included those who terminated and continued the pregnancy., RESULTS: Three superordinate themes were identified: 'Attachment and coping', 'There's no place for you in the pregnancy world' and 'Consistency of quality care'. Parents shared the different approaches and level of attachment to their baby that supported their coping. Regardless of the level of attachment, many parents benefited from the acts of remembrance. Parents expressed how they no longer felt they belonged in the 'pregnancy world' and described a need for healthcare professionals to recognise their loss and create a safe and supportive environment in which they could share their grief. Despite this, parents' accounts highlighted variations and inconsistencies in care and service provision., CONCLUSION: Our study highlighted parents' need for consistent, well communicated, and comprehensive care, which encourages an individualised perinatal palliative care approach to meet parental needs.
Jackson P; Power-Walsh S; Dennehy R; O'Donoghue K
Prenatal Diagnosis
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/pd.6311" target="_blank" rel="noreferrer noopener">10.1002/pd.6311</a>
The roles of preparation, location, and palliative care involvement in parent-perceived child suffering at the end of life
Parents; Palliative Care; End-of-life care; Palliative care; cancer; Complex chronic conditions; Cardiac disease
Purpose Parents' perceptions of their child's suffering affect their bereavement experience. Identifying factors that shape parental perceptions of suffering could help build effective supportive interventions for children and parents navigating EOL and grief. We aimed to compare parent-perceived child suffering between diagnostic groups and identify related factors. Design and methods We combined databases from 3 surveys of parents whose children who died following cancer, a complex chronic condition (CCC), or advanced heart disease. We built multivariable logistic regression models to identify relationships between parent-perceived child suffering and parent/child, illness experience, and care-related factors. Results Among 277 parents, 41% rated their child's suffering as moderate or high. Fifty-seven percent of parents whose child died from cancer reported that their child suffered “a lot” or “a great deal” at EOL, compared to 33% whose child died from a CCC, and 17% whose child died from heart disease (P < 0.001). Preparation for EOL symptoms was associated with decreased parent-perceived child suffering in multivariable modeling, with parents who were prepared for EOL 68% less likely to rate their child's suffering as high compared to those who felt unprepared (AOR: 0.32, CI [0.13–0.77], P = 0.013). Conclusions Preparing families for their child's EOL may help mitigate lingering perceptions of suffering. Operationalizing preparation is crucial to optimizing family support during EOL care. Implications to practice Preparation for symptoms, and access to resources, including medical/psychosocial interventions and staff, may help ease parental perception of EOL suffering. Clinicians should prioritize preparing families for what to expect during a child's dying process.
Broden EG; Mazzola E; DeCourcey DD; Blume ED; Wolfe J; Snaman JM
Journal of Pediatric Nursing
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.pedn.2023.06.024" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2023.06.024</a>
How do children’s nurses working in hospices manage emotional labour and professional integrity in long-term relationships with parents?
Parents; child; female; human; male; ethics; Hospices; emotion; clinical article; hospice; mobile phone; human experiment; nurse; human tissue; thematic analysis; conference abstract; coping behavior; theoretical study; social media; telephone interview; nursing practice; emotional intelligence; professionalism; purposive sample
Background Children with life-limiting conditions are living longer, so relationships between nurses and families can span decades (Maunder 2013)2. Although long-term relationships between nurses and children/families in paediatric palliative care have been researched, studies undertaken exclusively in children's hospices (CH) are rare. Aims Develop an understanding of how CH nurses maintain professional integrity whilst providing long-term practical, emotional, social and spiritual care to parents. Explore coping strategies used by CH nurses to manage emotional labour. Methods Participants were a purposive sample of six registered children's nurses, employed at CH for minimum of 4 years. Participants told the story of a shift, focusing on interactions with parents. Data collected (January 2019-January 2020) via audio diaries recorded on mobile phones and further explored in telephone interviews. Audio diaries securely transmitted via 'Whatsapp' (university and hospice ethics approval granted). Results Thematic analysis (Braun and Clarke 2006)1 was used to identify that participants used a range of strategies/ approaches to manage their relationship with parents; in terms of their emotions (Purposeful positioning) and interactions (Balancing personability and professionalism). In addition, participants revealed other CH specific factors which helped them cope with their role (Coping with and counterbalancing emotional labour). Discussion Findings were indicative of CH nurses' using and building Emotional Intelligence (EI). Established EI theory was combined with findings to develop: ENRiCHn (Using EI to Navigate Relationships in Children's Hospices: a framework for nurses). Although CH specific, aspects of the framework could be adapted for other areas of nursing practice where long-term nurse-parent/client relationships exist. Conclusions The findings provided an insight into how experienced CH nurses used emotional intelligence to engage emotionally with parents whilst simultaneously managing the level of involvement and maintaining a sense of separation. Features of hospice work which positively contributed to counterbalancing the emotional demands of the role were also highlighted.
Brimble MJ
BMJ Supportive and Palliative Care
2023
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<a href="http://doi.org/10.1136/spcare-2023-PCC.52" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-PCC.52</a>
Silent Mourning: Infant Death and Caring for Iranian Parents Under the Influence of Religious and Socio-cultural Factors
Humans; Infant; Grief; Infant Newborn; Intensive Care Units Neonatal; Parents; Iran; Death; Bereavement; Infant Death
Fadaei Z; Mirlashari J; Nikbakht NA; Ghorbani F
Journal of religion and health
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://link.springer.com/article/10.1007/s10943-022-01684-5">10.1007/s10943-022-01684-5</a>
Uncertainty and probability in neonatal end-of-life decision-making: analysing real-time conversations between healthcare professionals and families of critically ill newborns
Critical Illness; Decision Making; Child; Communication; Critical Illness; Critical Illness/th [Therapy]; Death; Decision Making; Delivery of Health Care; Female; Humans; Infant Newborn; Parents; Pregnancy; Probability; Qualitative Research; Uncertainty
BACKGROUND: A significant number of critically ill neonates face potentially adverse prognoses and outcomes, with some of them fulfilling the criteria for perinatal palliative care. When counselling parents about the critical health condition of their child, neonatal healthcare professionals require extensive skills and competencies in palliative care and communication. Thus, this study aimed to investigate the communication patterns and contents between neonatal healthcare professionals and parents of neonates with life-limiting or life-threatening conditions regarding options such as life-sustaining treatment and palliative care in the decision-making process., METHODS: A qualitative approach to analysing audio-recorded conversations between neonatal team and parents. Eight critically ill neonates and a total of 16 conversations from two Swiss level III neonatal intensive care units were included., RESULTS: Three main themes were identified: the weight of uncertainty in diagnosis and prognosis, the decision-making process, and palliative care. Uncertainty was observed to impede the discussion about all options of care, including palliative care. Regarding decision-making, neonatologists oftentimes conveyed to parents that this was a shared endeavour. However, parental preferences were not ascertained in the conversations analysed. In most cases, healthcare professionals were leading the discussion and parents expressed their opinion reactively to the information or options received. Only few couples proactively participated in decision-making. The continuation of therapy was often the preferred course of action of the healthcare team and the option of palliative care was not mentioned. However, once the option for palliative care was raised, the parents' wishes and needs regarding the end-of-life care of their child were obtained, respected, and implemented by the team., CONCLUSION: Although shared decision-making was a familiar concept in Swiss neonatal intensive care units, parental involvement in the decision-making process illustrated a somewhat different and complex picture. Strict adherence to the concept of certainty might impede the process of decision-making, thereby not discussing palliation and missing opportunities to include parental values and preferences. Copyright © 2023. The Author(s).
Limacher R; Fauchere JC; Gubler D; Hendriks MJ
BMC Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-023-01170-z" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01170-z</a>
Impact of compounded drugs on the caregivers' burden of home therapy management in pediatric palliative care: A descriptive study
Hospice and Palliative Care Nursing; Palliative Care; Caregivers; Child; Drug Compounding; Humans; Palliative Care; Parents; Quality of Life
BACKGROUND: Children with medical complexity need complex assistance, that considerably affects caregivers' quality of life. They often need multiple medications, with a consequent relevant risk of errors or poor compliance. Galenic (or compounded) drugs are blended in the pharmacy's laboratory worldwide according to different rules and tailoring the patient's needs. While their use may sometimes simplify these therapies, little is known about parents' attitude about this issue., AIM: This study aimed at investigating the complexity of the daily therapy management and exploring the parents' opinions about galenic compounds., DESIGN: Parents were interviewed by using a structured questionnaire., SETTING: Children followed by the Pediatric Palliative Care Network in Friuli Venezia Giulia, Italy, were included from November 2021 to April 2022. Those diagnosed with malignancies were excluded, since therapies are mainly administered through a central venous catheter., RESULTS: Thirty-four parents were interviewed. Fourteen patients took drugs orally, one via nasogastric tube (NGT), 18 via gastrostomy, and one orally + NGT. The mean number of drugs taken every day was six (2-14), in mean 10 (3-18) administrations, that overall required a mean of 44 (8-180) minutes to be delivered. Twenty-eight parents used galenic compounds, and 24 reported relevant advantages, because of a ready-to-use and safe formulation., CONCLUSIONS: The therapy management of children with medical complexity relies on parents. Galenic compounds may improve both patients' and caregivers' quality of life, either in terms of shorter time of administration or smaller risk of errors. Therefore, their use should be encouraged worldwide, according to the different reference rules.
Burlo F; Zanon D; Passone E; Toniutti M; Ponis G; Barbi E; Taucar V; De Zen L
Palliative Medicine
2023
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<a href="http://doi.org/10.1177/02692163231151733" target="_blank" rel="noreferrer noopener">10.1177/02692163231151733</a>
Uncertainty and Perinatal Post?Traumatic Stress Disorder in the Neonatal Intensive Care Unit
Male; Female; Infant; Palliative Care; Parents; Infant Newborn; Questionnaires; Prospective Studies; Intensive Care Units Neonatal; Hospitalization; Mental Disorders; Intensive Care Units; Patient Discharge; Data Analysis Software; Human; Descriptive Statistics; Stress Disorders Post-Traumatic; Perinatal Care; Uncertainty; Scales; Psychosocial Factors; Comparative Studies; Coefficient Alpha; Summated Rating Scaling; After Care; Hypothesis; Parent-Infant Relations; Psychologists; Reliability and Validity
Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post?traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of uncertainty about illness have been theorized as an antecedent to post?traumatic stress, however the relationship has not been explored in parents of infants requiring care in the NICU. The purpose of this prospective study was to explore parental uncertainty during and after NICU discharge and the relationship between uncertainty and PPTSD. The sample consisted of 319 parents during NICU hospitalization and 245 parents at 3 months postdischarge. Parents who screened positive for PPTSD 3 months after hospital discharge reported more uncertainty both while in the NICU and 3 months after hospital discharge (p < 0.001). In parents with a personal or family history of mental illness, the moderated/mediating structural probit analysis showed no direct or indirect effect of uncertainty during hospitalization or at 3 months after hospital discharge on screening positive for PPTSD. In parents who did not report personal or family history of mental illness, uncertainty at 3 months after hospital discharge had a direct effect (b = 0.678, p < 0.001) and indirect mediating effect (b = 0.276, p < 0.001) on screening positive for PPTSD. The results provide actionable implications for mental health and NICU providers: (1) routine screening for uncertainty and risk factors including previous personal and family history of mental illness, and (2) the development of NICU follow?up support services to mitigate risk for PPTSD.
Malin KJ; Johnson TS; Brown RL; Leuthner J; Malnory M; White?Traut R; Rholl E; Lagatta J
Research in Nursing and Health
2022
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<a href="http://doi.org/10.1002/nur.22261" target="_blank" rel="noreferrer noopener">10.1002/nur.22261</a>
Living With Loss: Study Protocol for a Randomized Controlled Trial Evaluating an Internet-Based Perinatal Bereavement Program for Parents Following Stillbirth and Neonatal Death
Male; Female; Bereavement; Parents; Quality of Life; Grief; Infant Newborn; Australia; Pregnancy; Internet; Clinical Trials; Perinatal Death; Scales; Psychosocial Factors; Prevention and Control
Background: Stillbirth and neonatal death are devastating pregnancy outcomes with long-lasting psychosocial consequences for parents and families, and wide-ranging economic impacts on health systems and society. It is essential that parents and families have access to appropriate support, yet services are often limited. Internet-based programs may provide another option of psychosocial support for parents following the death of a baby. We aim to evaluate the efficacy and acceptability of a self-guided internet-based perinatal bereavement support program "Living with Loss" (LWL) in reducing psychological distress and improving the wellbeing of parents following stillbirth or neonatal death.Methods: This trial is a two-arm parallel group randomized controlled trial comparing the intervention arm (LWL) with a care as usual control arm (CAU). We anticipate recruiting 150 women and men across Australia who have experienced a stillbirth or neonatal death in the past 2 years. Participants randomized to the LWL group will receive the six-module internet-based program over 8 weeks including automated email notifications and reminders. Baseline, post-intervention, and 3-month follow-up assessments will be conducted to assess primary and secondary outcomes for both arms. The primary outcome will be the change in Kessler Psychological Distress Scale (K10) scores from baseline to 3-month follow-up. Secondary outcomes include perinatal grief, anxiety, depression, quality of life, program satisfaction and acceptability, and cost-effectiveness. Analysis will use intention-to-treat linear mixed models to examine psychological distress symptom scores at 3-month follow-up. Subgroup analyses by severity of symptoms at baseline will be undertaken.Discussion: The LWL program aims to provide an evidence-based accessible and flexible support option for bereaved parents following stillbirth or neonatal death. This may be particularly useful for parents and healthcare professionals residing in rural regions where services and supports are limited. This RCT seeks to provide evidence of the efficacy, acceptability, and cost-effectiveness of the LWL program and contribute to our understanding of the role digital services may play in addressing the gap in the availability of specific bereavement support resources for parents following the death of a baby, particularly for men.Trial Registration: Australian New Zealand Clinical Trials Registry, ACTRN12621000631808 . Registered prospectively on 27 May 2021.
Loughnan SA; Boyle FM; Ellwood D; Crocker S; Lancaster A; Astell C; Dean J; Horey D; Callander E; Jackson C; Shand A; Flenady V
Trials
2022
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<a href="http://doi.org/10.1186/s13063-022-06363-0" target="_blank" rel="noreferrer noopener">10.1186/s13063-022-06363-0</a>
What Does 'Good' Palliative Care Look Like for Children and Young People? A Qualitative Study of Parents' Experiences and Perspectives
End-of-life care; Child; Palliative Care; child; parents; qualitative research; palliative care; Only Child
BACKGROUND: Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and what is being done, in clinical practice. In 2017, the National Institute for Health and Care Excellence (NICE) introduced a quality standard, to standardise and improve children's palliative care in England. However, there is little evidence about what good experiences of palliative care for children are, and how they relate to the quality standard for end-of-life care. AIM: This study explored how the NICE quality standard featured in parental experiences of palliative care for children to understand what 'good' palliative care is. DESIGN: Qualitative study, employing in-depth, telephone and video-call, semi-structured interviews. Data were analysed using thematic analysis, informed by Appreciative Inquiry. SETTING/PARTICIPANTS: Participants were parents of children and young people (aged 0-17?years) in England, who were receiving palliative care, and parents whose child had died. RESULTS: Fourteen mothers and three fathers were interviewed. Seven were bereaved. Parents were recruited via four children's hospices, one hospital, and via social media. Good palliative care is co-led and co-planned with trusted professionals; is integrated, responsive and flexible; encompasses the whole family; and enables parents to not only care for, but also to parent their child to end of life. CONCLUSIONS: Findings have implications for informing evidence based practice and clinical guidelines, overall improving experiences of care.
Fields D; Fraser LK; Taylor J; Hackett J
Palliative Medicine
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163231154300" target="_blank" rel="noreferrer noopener">10.1177/02692163231154300</a>
Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review
Adolescent; anxiety; autism spectrum disorder; Autism Spectrum Disorder; behaviour; Child; Child, Preschool; communication; Humans; hyperactivity; Infant; Infant, Newborn; Medical Marijuana; Parents; Prospective Studies; Retrospective Studies; Medicinal Cannabis
BACKGROUND: Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited, parents are increasingly turning to clinicians for advice regarding the use of medicinal cannabis to manage behavioural disturbances. OBJECTIVE: The objective of this scoping review was to identify and map symptoms, outcomes and adverse events related to medicinal cannabis treatment for ASD-related behaviours. METHODS: Ovid MEDLINE, Embase, CINAHL, PsycInfo, Web of Science Core Collection, Google Scholar and grey literature sources were searched up to 5 January 2020 for studies. Included studies met the following criteria: (1) investigate the use of medicinal cannabis, (2) at least 50% participants had ASD, (3) at least 50% of the study population was 0-18 years old and (4) any study design (published or unpublished). RESULTS: We identified eight completed and five ongoing studies meeting the inclusion criteria. All studies reported substantial behaviour and symptom improvement on medicinal cannabis, with 61% to 93% of subjects showing benefit. In the three studies reporting on concomitant psychotropic medication usage and with cannabis use, up to 80% of participants observed a reduction in concurrent medication use. Adverse events related to cannabis use were reported in up to 27% of participants related, and two participants had psychotic events. CONCLUSIONS: Early reports regarding medicinal cannabis in paediatric ASD symptom management are presented as positive; the evidence, however, is limited to very few retrospective cohort and observational studies. Evidence of safety and efficacy from prospective clinical trials is needed.
Fletcher S; Pawliuk C; Ip A; Huh L; Rassekh SR; Oberlander TF; Siden H
Child: Care, Health and Development
2022
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<a href="http://doi.org/10.1111/cch.12909" target="_blank" rel="noreferrer noopener">10.1111/cch.12909</a>
Symptoms, adverse events, and outcomes in the use of medicinal cannabis in children and adolescents with autism spectrum disorder: a scoping review protocol
Adolescent; Autism Spectrum Disorder; Child; Delivery of Health Care; Humans; Medical Marijuana; Parents; Review Literature as Topic; Medicinal Cannabis
OBJECTIVE: The objective of this scoping review is to map and identify the symptoms, adverse events, and outcomes in the use of medicinal cannabis in children and adolescents with autism spectrum disorder. INTRODUCTION: Autism spectrum disorder is a neurodevelopmental disorder that impacts social communication and social interaction, and is associated with restrictive and repetitive behaviors and interests. Medicinal cannabis has become a potential area of interest for parents for the treatment of autism spectrum disorder symptoms in their children. There is some evidence that cannabinoids may be involved in autism spectrum disorder, laying a potential foundation for medicinal cannabis utility; however, previous reviews did not identify any clinical research on this topic. INCLUSION CRITERIA: This scoping review will consider all published and unpublished studies that investigate the use of medicinal cannabis in autism spectrum disorder, where at least 50% of the participants have a diagnosis of autism spectrum disorder and at least 50% of the study population is 0 to 18 years of age, or where pediatric data are reported separately. Studies undertaken in any context (hospital or community) and in any geographic location will be included. METHODS: We will search MEDLINE, Embase, CINAHL, PsycINFO, Web of Science, and Google Scholar, and the gray literature sources for studies. Two independent team members will screen titles and abstracts, review full texts for potential inclusion, and extract data for all studies. The results will be presented as a narrative synthesis and in tabular form.
Fletcher S; Pawliuk C; Ip A; Oberlander T; Siden H
JBI Evidence Synthesis
2021
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<a href="http://doi.org/10.11124/JBIES-20-00001" target="_blank" rel="noreferrer noopener">10.11124/JBIES-20-00001</a>
Experiences and Needs of Parents of Palliative Paediatric Oncology Patients: A Meta-Synthesis
child; cancer; parents; palliative care; end-of-life; paediatric
INTRODUCTION: Despite palliative care being offered to paediatric cancer patients, it has limited utilisation and often excludes parental support. Therefore, this review aims to consolidate evidence regarding experiences and needs of parents of end-of-life palliative paediatric oncology patients. METHODS: Six electronic databases were searched as follows: CINAHL, The Cochrane Library, Embase, PubMed, Scopus and PsycINFO. Included studies were appraised using the Critical Appraisal Skills Programme Checklist. They were then analysed using a two-step approach comprising firstly meta-summaries followed by meta-synthesis for generating fresh insights to the topic. RESULTS: Thirteen studies were included. Three themes emerged as follows: (1) normalising the pain; (2) failure as a parent; and (3) importance of communication and social support. Parental experiences included moving on despite the pain and harbouring hopes for their children. However, parents felt immense guilt and a sense of failure in carrying out their parental roles. Effective communication with healthcare providers, availability of family support and religion were necessary to help them cope. CONCLUSIONS: Given the emotional challenges faced by parents, healthcare policies and practices should be revised to include parental support in paediatric palliative care services. Future healthcare communication trainings should consider parental need for sensitivity in communication, empathy and kindness from healthcare professionals.
Tan AJN; Tiew LH; Shorey S
European Journal of Cancer Care
2020
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<a href="http://doi.org/10.1111/ecc.13388" target="_blank" rel="noreferrer noopener">10.1111/ecc.13388</a>
Parents' Views on What Facilitated or Complicated Their Grief after Losing A Child to Cancer
Bereavement; Grief; Pediatric oncology; Parents; Coping
OBJECTIVES: The loss of a child is a devastating event, and bereaved parents often suffer intense and long-lasting grief reactions and are at risk for psychological symptoms. More knowledge about how parents cope with grief may improve the support to bereaved parents. This study, therefore, aimed to explore parents' views on what facilitated or complicated their grief coping after losing a child to cancer. METHODS: This study was derived from a nationwide postal survey. Cancer-bereaved parents (n = 161) provided written responses to two open-ended questions: "Is there anything that has helped you cope with your grief after your child's death?" and "Is there anything that made it difficult for you to cope with your grief?" Content analysis was used to analyze the responses. RESULTS: Parents reported that a supportive social network of family and friends, and having remaining children, facilitated their coping with grief. Meeting professional counselors and meeting other bereaved parents, connecting to memories of the deceased child in various contexts, including school and pediatric care settings, were also reported facilitating grief coping. Parents stated that the following experiences had complicated grief coping: additional losses in their family or social network; not being able to share emotions with their partner; when they perceived that friends, relatives, or colleagues lacked empathy or patience; when they felt challenging demands from employers at a too early stage. SIGNIFICANCE OF RESULTS: This study contributes to the understanding of parents' grief experiences and what has facilitated or complicated their coping with grief, which can help health care professionals and others improve bereavement support services.
Pohlkamp L; Sveen J; Kreicbergs U; Lövgren M
Palliative and Supportive Care
2020
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<a href="http://doi.org/10.1017/s1478951520001212" target="_blank" rel="noreferrer noopener">10.1017/s1478951520001212</a>
Parental Perceptions of Hospital-Based Bereavement Support Following a Child's Death from Cancer: Room for Improvement
Bereavement; Grief; Parents; Childhood Cancer; Bereavement Support
CONTEXT: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents continue to express a desire for additional assistance. OBJECTIVES: We examined parental perceptions of bereavement support from the clinical teams and institution and suggested modifications to hospital support strategies. METHODS: We explored the answers to four questions on the bereavement support provided from the care team and institutional mailings from a larger survey, querying parents of children who died from cancer 6 to 24 months prior to participation. Answers were Likert-scale based with additional free text responses. RESULTS: Forty-nine parents completed the survey (response rate 36%). The respondents were predominantly white (N=43, 88%), female (N=32, 65%), and non-Hispanic/Latino (N=43, 88%). The mean length of time from child's death to completion was 13 months. Twenty-seven (55%) and 26 (53%) parents indicated that contact with care team and mailings, respectively, were at least a little helpful in their grief experience. In free text responses, parents identified support outside the hospital (28 respondents), groups and events hosted by the hospital or hospice (8), contact with care team (3), and hospital mailings (1) as the most helpful. Findings support modifications to hospital support strategies. CONCLUSIONS: Bereaved parents request additional supportive services. Using the parents' perspective and recommendations, we outline options to augment support and provide a variety of supportive resources for bereaved parents to access in their own time.
Helton G; Morris SE; Dole OR; Wolfe J; Snaman JM
Journal of Pain and Symptom Management
2020
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.11.012" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.11.012</a>
Advance Care Planning For Adolescents with Cancer and Their Parents: Study Protocol of the Boost Pacp Multi-Centre Randomised Controlled Trial and Process Evaluation
Child; Adolescent; Humans; Terminal Care; Surveys and Questionnaires; Parents; Communication; Advance Care Planning; Randomized Controlled Trials as Topic; Multicenter Studies as Topic; Advance care planning; Neoplasms/therapy; Adolescent; Multi-Centre randomised controlled trial; Paediatric oncology; Paediatric palliative care; Parent-adolescent communication
BACKGROUND: Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and preferences for treatment, there is a lack of structured multicomponent interventions to improve parent-adolescent communication on different ACP themes including those not limited to end-of-life care. The aim of this study is to evaluate the effectiveness and implementation, context and mechanisms of impact of a novel ACP program in paediatric oncology. METHODS: We will conduct a multi-centre parallel-group randomised controlled superiority trial with embedded mixed-methods process evaluation in Flanders, Belgium. Adolescents aged 10-18 who have cancer, and their parent(s) will be recruited via all four university hospitals in Flanders, Belgium, and support groups. Families will be randomised to receive care as usual or the multicomponent BOOST pACP program, consisting of three conversation sessions between an external facilitator and the adolescent and parent(s). The primary endpoint is improved parent-adolescent communication from the perspective of the adolescent. Secondary endpoints are adolescents' and parents' attitudes, self-efficacy, intention and behaviour regarding talking about ACP themes with each other, parents' perspective of shared decision making in the last clinical encounter, and the paediatric oncologist's intention and behaviour regarding talking about ACP themes with the family. Measurements will be performed at baseline, at 3 months and at 7 months using structured self-reported questionnaires. We will perform a process evaluation in the intervention group, with measurement throughout and post-intervention, using structured diaries filled out by the facilitators, interviews with facilitators, interviews with involved paediatric oncology teams, and audio-recordings of the BOOST pACP conversations. DISCUSSION: The BOOST pACP program has been developed to stimulate conversations on ACP themes between parent(s) and the adolescents, simultaneously lowering the threshold to discuss similar themes with healthcare professionals, initiating a process of normalization and integration of ACP in standard care. This combined outcome and process evaluation aims to contribute to building the necessary evidence to improve ACP in paediatric oncology. TRIAL REGISTRATION: The study is registered at ISRCTN, ISRCTN33228289 . Registration date: January 22, 2021.
van Driessche A; De Vleminck A; Gilissen J; Kars MC; van der Werff TBJ; Deliens L; Cohen J; Beernaert K
BMC Pediatrics
2021
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<a href="http://doi.org/10.1186/s12887-021-02841-7" target="_blank" rel="noreferrer noopener">10.1186/s12887-021-02841-7</a>
Perceptions of the Parents of Deceased Children and of Healthcare Providers about End-Of-Life Communication and Breaking Bad News at a Tertiary Care Public Hospital in India: A Qualitative Exploratory Study
Palliative care; communication; Pediatrics; Parents; Nurses; Qualitative Studies; Physicians
BACKGROUND: Parents of dying children face unique challenge and expect compassionate support from health care providers (HCPs). This study explored the experiences of the parents and HCPs about the end-of-life care and breaking bad news and related positive and negative factors in Indian context. METHODS: This qualitative exploratory study was conducted at paediatrics department of a tertiary care hospital in Delhi. In-depth interviews with the parents (n = 49) and family members (n = 21) of the children died at the hospital and HCPs (6 doctors, 6 nurses and 4 support staffs) were conducted. Also events and communication around death of eight children were observed. Data were inductively analysed using thematic content analysis method to identify emerging themes and codes. RESULTS: Doctors were the lead communicators. Majority of parents perceived the attitude, communication and language used as by resident doctors as brief, insensitive and sometimes inappropriate or negative. They perceived that the attitude and communication by senior doctor's as empathetic, positive and complete. Parents recalled the death declaration by resident doctors as non-empathetic, blunt and cold. Most parents received no emotional support from HCPs during and after death of their child. All doctors expressed that death of their patients affected them and their emotions, which they coped through different activities. The overcrowded wards, high workload, infrastructural limitation and no formal communication training added to the emotional stress of the HCPs. CONCLUSIONS: Majority of the communication by the HCPs during the hospitalisation and end-of-life period were perceived as suboptimal by the parents. The HCPs were emotionally affected and faced end-of-life communication challenges. The study highlights the communication by HCPs and support for parents during the end-of-life communication and breaking bad news. It suggests adoption of context specific communication protocol and materials and training of HCPs in communication to improve the quality of care.
Das MK; Arora NK; Chellani HK; Debata PK; Meena KR; Rasaily R; Kaur G; Malik P; Joshi S; Kumari M
PLoS One
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/10.1371/journal.pone.0248661" target="_blank" rel="noreferrer noopener">10.1371/journal.pone.0248661</a>
Improvement and Implementation of a National Individual Care Plan in Paediatric Palliative Care: A Study Protocol
Hospice and Palliative Care Nursing; Palliative Care methods; Child; Female; Health Personnel; Human; Male; Netherlands; Palliative Care; Parents
INTRODUCTION: Paediatric palliative care (PPC) is care for children with life-threatening or life-limiting conditions, and can involve complex high-tech care, which can last for months or years. In 2015, the National Individual Care Plan (ICP) for PPC was developed and has shown to be successful. The ICP can be seen as an instrument to facilitate coordination, quality and continuity of PPC. However, in practice, an ICP is often completed too late and for too few children. We aim to improve the coordination, quality and continuity of care for every child with a life-threatening or life-limiting condition and his/her family by further developing and implementing the ICP in the Netherlands. METHODS AND ANALYSIS: To evaluate the original ICP, ICP 1.0, interviews and questionnaires will be held among parents of children who have or have had an ICP 1.0 and healthcare professionals (HCPs) who used ICP 1.0. Based on the results, ICP 1.0 will be further developed. An implementation strategy will be written and the renewed ICP, ICP 2.0, will be nationally tested in an implementation period of approximately 7 months. During the implementation period, ICP 2.0 will be used for all children who are registered with Children's Palliative Care teams. After the implementation period, ICP 2.0 will be evaluated using interviews and questionnaires among parents of children who received ICP 2.0 and HPCs who worked with ICP 2.0. Based on these results, ICP 2.0 will be further optimised into the final version: ICP 3.0. ETHICS AND DISSEMINATION: This study received ethical approval. The ICP 3.0 will be disseminated through the Dutch Centre of Expertise in Children's Palliative Care, to ensure wide availability for the general public and HCPs within PPC. Additionally, we aim to publish study results in open-access, peer-reviewed journals and to present results at national and international scientific meetings.
Joren CY; Kars MC; Kremer LCM; Rippen H; Verhagen AAE; Aris-Meijer JL
BMJ Paediatrics Open
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/10.1136/bmjpo-2022-001677" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2022-001677</a>
Pediatric Goals of Care Communication: A Socioecological Model to Guide Conversations
Palliative Care; Quality of Life; Advance Directives; Child; Communication; Human; Parents; Patient Care Planning; United States
The purpose of this article is to explore factors that influence pediatric patients and their parents during provider-led goals-of-care conversations. Our framework can help providers enhance holistic communication by approaching difficult topics (ie, quality of life, end of life) with an understanding of the multilayered external influences that affect patient/parent decision making. A 5-layer model is presented that describes facilitators to conversations about quality goals of care and advance directives. Each year, complex health conditions (a) affect approximately 500 000 children in the United States, 8600 of whom meet current palliative care criteria, and (b) account for over 7 million child deaths globally. Nurses can use knowledge of the unique values and culture of families with children who have complex health conditions to support them by providing high quality, ongoing goals-of-care conversations, especially if their access to pediatric palliative care is limited.
Grier K; Koch A; Docherty S
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/10.1097/njh.0000000000000923" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000923</a>
Listening to Parents of Children With Cancer-Between Life and its end
This study aimed to explore and provide an in-depth insight into the experience and perceptions of parents to children with cancer at the end of life (EOL). A sample of 15 parents of children (aged 2-18) with cancer participated in semi-structured interviews in an oncology department of an Israeli hospital. Data were analyzed using a phenomenological thematic analysis approach. The findings that emerged revealed: (a) the cultural aspect of the Israeli society of the importance of family and of the children within the family, (b) the parents' unique way of coping, of holding a dual awareness, and (c) emphasizing that hope and support are necessary components for parents' ability to cope with their child having terminal cancer, at the EOL. A number of important practical recommendations can be made for professionals treating child facing the EOL with cancer and their families. First, understanding the "double awareness" developed by parents of children facing with EOL cancer. Second, there is significance to bring the medical staff closer to the patient's bed, which is to say, training medical staff in open communication on this subject. Third, it is recommended to construct intervention programs that would accompany the whole family and not just the parents. Fourth, there is some necessity to train healthcare teams working in pediatric oncology wards and providing palliative care, to teach them how to help people hold on hope and to evaluate hope in parents of children at the EOL.
Manor-Binyamini I; Schreiber-Divon M
Journal of Patient Experience
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/10.1177/23743735221106589" target="_blank" rel="noreferrer noopener">10.1177/23743735221106589</a>
The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents: development, acceptability and feasibility
BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a process of behaviour change. We aimed to develop and test the acceptability and feasibility of BOOST pACP (Benefits of Obtaining Ownership Systematically Together in paediatric Advance Care Planning) - an intervention to improve ACP in adolescents with cancer, their parents and paediatric oncologists. METHODS: Several methods informed the intervention development process: 1) Problem identification: interviews with 11 healthcare professionals working in paediatric oncology; 2) Identification of evidence: literature review of existing pACP tools and barriers and facilitators in performing pACP; 3) Logic model and 4) Intervention design: collaborative expert meetings with researchers and professionals in pACP; 5a) Acceptability test of the materials: interviews with nine healthcare professionals, four adolescents and young adults with cancer and six parents; 5b) Feasibility test of core intervention components with three families, including interviews about their experiences. RESULTS: The BOOST pACP intervention was iteratively developed and adapted, based on feedback from families, healthcare professionals, and pACP experts (e.g., components were changed, deleted, and added; formulation of themes and associated questions were amended to enhance acceptability). The core components of the BOOST pACP intervention include: four ACP conversation sessions with the adolescent and/or parent(s) provided by a trained facilitator, structured by interactive conversation cards covering different ACP themes, followed by a transfer of information from the intervention facilitator to the paediatric oncologist. Core intervention components were deemed feasible by all participating families. CONCLUSION: The BOOST pACP intervention was developed by close involvement of both adolescent patients and their parents, healthcare professionals and pACP experts. The final intervention and supporting materials are considered appropriate and feasible. Its effectiveness in improving parent-adolescent communication on ACP themes is currently being tested in a multi-centre randomised controlled trial. Researchers aiming to develop a complex psychosocial intervention for a vulnerable target group could use the step-by-step approach described in this paper.
van Driessche A; Gilissen J; De Vleminck A; Kars M; Fahner J; van der Werff TBJ; Deliens L; Cohen J; Beernaert K
BMC Pediatrics
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12887-022-03247-9" target="_blank" rel="noreferrer noopener">10.1186/s12887-022-03247-9</a>
Understanding the Bereavement Process: Voices of Bereaved Parents
bereaved parent; Bereavement; Parents
Analysis of in-depth qualitative interviews with 20 bereaved parents and 11 service providers revealed a more holistic conceptualization of the bereavement process for parents who have lost a child. Holistic ?states? included: ?helplessness prior to the death,? ?fog,? ?turmoil,? ?transition,? ?new beginnings,? and ?stability.? Findings showed that loss and restorative processes are characteristic of more than one state, the bereavement narrative starts prior to the death, there is often a downturn after the bereaved parent seemingly is doing better, and the process never ends but may include a continuing bond with the deceased and reoccurring moments of extreme grief. Recommendations for direct practice, program development, and future research are presented.
Calderwood KA; Alberton AM
Illness, Crisis & Loss
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10541373211030491" target="_blank" rel="noreferrer noopener">10.1177/10541373211030491</a>
Using mobile phones, WhatsApp and phone interviews to explore how children's hospice nurses manage long-term relationships with parents: a feasibility pilot
Child; Humans; Pilot Projects; Covid-19; Parents; Cell Phone; data collection; interviews; methodology; research; research methods
BACKGROUND: Mobile phones are familiar to most nurses, but the applications available for voice recording and transfer of audio files in research may not be. AIM: To provide an overview of a pilot study which trialled the use of mobile phones, WhatsApp and phone interviews as a safe and reliable means of collecting data. DISCUSSION: A pilot study was designed to test the use of: mobile phones as a safe and reliable way to record audio diaries as research data; WhatsApp to transmit the audio files; and phone interviews to explore them. Undertaking the pilot demonstrated that the tools proposed for collecting data were useable and acceptable to the target population and that the researcher's guidance for doing so was satisfactory. CONCLUSION: New technologies enable innovation but trialling them for useability is important. Confidentiality and consent need to be carefully managed when using WhatsApp to ensure a study is compliant with data protection regulations. IMPLICATIONS FOR PRACTICE: Collection of research data digitally and remotely has become increasingly mainstream and relied on during the COVID 19 pandemic. The methods discussed in this article provide solutions for timely data collection that are particularly useful when the researcher is geographically distant from participants. The 'in the moment' reflective nature of the audio diaries could also be applicable to non-research settings - for example, as a method of assisting ongoing professional development and/or collection of reflective accounts.
Jane BM; Anstey S; Davies J; Dunn C; Jones A
Nursing Research
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/10.7748/nr.2022.e1849" target="_blank" rel="noreferrer noopener">10.7748/nr.2022.e1849</a>
Understanding Parent Experiences of End-Of-Life Care for Children: A Systematic Review and Qualitative Evidence Synthesis
end-of-life care;Child; Palliative Care; Parents; qualitative research; systematic review
BACKGROUND: An estimated 21 million children worldwide would benefit from palliative care input and over 7 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support. There is a lack of synthesised research about how parents experience the care delivered to their child at the end of life. AIM: To systematically identify and synthesise qualitative research on parents' experiences of end-of-life care of their child. DESIGN: A qualitative evidence synthesis was conducted. The review protocol was registered in PROSPERO (CRD42021242946). DATA SOURCES: MEDLINE, EMBASE, CINAHL, PsycINFO and Web of Science databases were searched for qualitative studies published post-2000 to April 2020. Studies were appraised for methodological quality and data richness. Confidence in findings was assessed by GRADE-CERQual. RESULTS: About 95 studies met the eligibility criteria. A purposive sample of 25 studies was taken, of good-quality papers with rich data describing the experience of over 470 parents. There were two overarching themes: parents of children receiving end-of-life care experienced a profound need to fulfil the parental role; and care of the parent. Subthemes included establishing their role, maintaining identity, ultimate responsibility, reconstructing the parental role, and continuing parenting after death. CONCLUSIONS: Services delivering end-of-life care for children need to recognise the importance for parents of being able to fulfil their parental role and consider how they enable this. What the parental role consists of, and how it's expressed, differs for individuals. Guidance should acknowledge the need to enable parents to parent at their child's end of life.
Barrett L; Fraser L; Noyes J; Taylor J; Hackett J
Palliative Medicine
2022
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/10.1177/02692163221144084" target="_blank" rel="noreferrer noopener">10.1177/02692163221144084</a>