Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates
Infant Newborn; Decision Making; Germany; terminal care; adult; female; human; major clinical study; male; newborn; quality of life; aged; interview; physician; life sustaining treatment; shared decision making; cross-sectional study; medical ethics; middle aged; adolescent; parent; conference paper; decision making; euthanasia; treatment withdrawal; socioeconomics; attitude to health; sociodemographics; comprehension; German (language)
Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the general public have not yet been investigated. Objective: To assess (1) attitudes in the general public toward euthanasia and withdrawal of life-prolonging treatment in neonates with severe life-limiting conditions, (2) knowledge of current German recommendations, and (3) values in the German society regarding ethical issues and proxy decisions at the beginning of life. Design, setting, and participants: This cross-sectional study was performed in Germany and used an exploratory design to analyze responses to an interview conducted by an independent, established commissioned polling institute in March and April 2022. Participants were 16 years or older, with German language fluency and comprehension and living in Germany. Main outcomes and measures: Knowledge about recommendations for euthanasia and withdrawal of life-prolonging treatment as well as personal attitudes toward (1) euthanasia and withdrawal of life-prolonging treatment and (2) surrogate end-of-life decision-making for newborn infants were assessed. Results: The study included 2116 participants (1077 females [50.9%]; mean [SD] age 52.1 [18.7] years). Of the participants, 16.8% (311 of 1851) reported knowing the German recommendations for euthanasia and withdrawal of life-prolonging treatment for neonates. Euthanasia and withdrawal of life-prolonging treatment were supported by 64.7% (1369 of 2116) and 77.9% (1649 of 2116) of respondents, respectively. Shared decision-making between parents and physicians for neonates in end-of-life situations was supported by 65.6% of participants (1388). In situations where shared decision-making was not possible, 73.4% of respondents (1019 of 1388) put the ultimate decision to the parents. The magnitude of the associations was low between sociodemographic factors and views on ethical issues and customary practices involved in end-of-life decisions for neonates. Conclusions and relevance: Results of this cross-sectional study suggested that most respondents were not aware of the national German recommendations for euthanasia and withdrawal of life-prolonging treatment for sick and extremely preterm newborns. When counseling parents of periviable newborns, clinicians may need to exert more effort in explaining the legal and ethical framework; a highly individualized approach is warranted.
Schneider K; Roll S; Tissen-Diabate T; Buhrer C; Garten L
JAMA Network Open
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/10.1001/jamanetworkopen.2023.53264" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2023.53264</a>
Social work practice in perinatal palliative care: an overview
Palliative Care; adult; article; female; human; male; quality of life; palliative therapy; knowledge; bereavement; social worker; health care access; care behavior; collaborative care team; social work practice; Social Work; social work; social justice
Social workers in Perinatal Palliative Care (PPC) play an essential role in caring for birthing people carrying a baby with a life-limiting condition and their families. Perinatal palliative care is consistent with social work values concerning fostering quality of life and promoting social justice and access to care. Social workers play a multidimensional role in providing a holistic approach to caring for the birthing person, baby, and family. Although social workers may be part of an interdisciplinary care team, their role is not defined solely by the goals of the greater team, nor has it been discussed in depth in the perinatal palliative care literature. The purpose of this paper is to describe the knowledge, values, and skills essential to the role of the social worker in a hospital-based perinatal palliative care team. A case study will be used to illustrate the relevant practices, and implications are outlined.
Santiago-Warner S
Social Work in Health Care
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/10.1080/00981389.2024.2316697" target="_blank" rel="noreferrer noopener">10.1080/00981389.2024.2316697</a>
Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study
child; Palliative Care; adult; article; female; human; male; palliative therapy; aged; coping; knowledge; Spain; personal experience; terminal disease; parent; qualitative research; health care personnel; decision making; interview; pediatric hospital; clinician; religion; philosophy; religiosity; Southern European
Background: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an increase of cultural and religious diversities resulting in a much broader spectrum of spiritual and religious beliefs. This study aimed to explore the parents' own spirituality, religiosity, and philosophy of life in coping with the care of their child with palliative needs. Methods: Qualitative interviews of 14 parents of children included in a palliative care program in a pediatric hospital in Barcelona, Spain. Inclusion criteria were parents of children who have been cared for the palliative care program for a minimum of 3 months and who displayed a willingness to talk about their personal experiences and gave written consent. Interviews were audio-recorded, transcribed by an independent service, and analyzed on a case-by-case basis using Interpretative Phenomenological Analysis. Results: The three domains identified were life philosophy, relational, and transcendent. Life philosophy included principles that guided parents' decision-making, and how the onset of their child's serious illness had promoted a change in their values. Relational was focused on how they perceived themselves (e.g. motherhood), others (e.g. one's own child exceptionality), and the way they believed others perceived and supported them (e.g. relatives, friends, and healthcare providers). The transcendent domain involved God-related concepts, divinity and divine intervention (e.g. a miracle as an interpretive framework for that which cannot be explained within scientific knowledge limitations). Conclusions: Inflexible categories identifying parents as having a particular religious faith tradition are not sufficient to capture the interrelation of knowledges (ethical, religious, scientific) that each parent generates when faced with their child receiving palliative care. Clinicians should explore parents' spirituality in an individualized way that responds to the uniqueness of their experiential process.
Miquel P; Clemente I; Ciccorossi M
BMC Palliative Care
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/10.1186/s12904-024-01345-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-024-01345-2</a>
Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment
Child; child; adult; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; chronic disease; Socioeconomic Factors; gestational age; Referral and Consultation; ethnicity; Only Child; patient referral; tertiary care center; morbidity; mortality; neurologic examination; multidisciplinary team; Hispanic; medicaid; racism; primary medical care; special situation for pharmacovigilance; racial disparity; economic inequality
Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality. Study design: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. Results: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. Conclusions: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care.
Jones MN; Simpson SL; Beck AF; Cortezzo DE; Thienprayoon R; Corley AMS; Thomson J
Journal of Pediatrics
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/10.1016/j.jpeds.2024.113930" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2024.113930</a>
Investigation of the impact of paediatric hospices on the quality of care of paediatric nurses
child; adult; female; human; male; Hospices; young adult; hospice; nurse; questionnaire; hospice care; pediatric nursing; pediatric nurse
BACKGROUND: The establishment of paediatric hospices improves the quality of care of paediatric nurses. AIM: To examine the effect of establishing paediatric hospices on the quality of care of paediatric nurses. <br/>METHOD(S): Data was collected between 22 October 2022 and 25 February 2023. An online survey method was used to collect sociodemographic data and paediatric hospice data for paediatric nurses and a scale was used to determine the opinions of nurses working in the field of paediatrics. A total of 300 paediatric nurses who voluntarily participated in the collection of the research data were selected with the convenience sampling method, with written consent. SPSS 26.0 data analysis programme was used in the statistical analysis of the data obtained in the study, and Independent Sample t-test and ANOVA analysis were used in the analysis of the data. FINDINGS: Of the participating paediatric nurses, 60.9% were women, 39.1% were men, 41.1% were married, 65.9% were between the ages of 22-33, and 71.6% worked at a paediatric hospice. There was no significant difference in paediatric hospice scale scores according to sociodemographic variables such as gender, age, marital status, education level and the health institution worked by paediatric nurses (p>.05). There was a significant difference in paediatric hospice scale scores according to hospice information. It was determined that the establishment of paediatric hospices had an effect on the quality of care (p<.01). <br/>CONCLUSION(S): Paediatric nurses felt that the establishment of paediatric hospices would improve the quality of care of children at the end of life. It is recommended that applications and studies on the establishment and structuring of paediatric hospices should be carried out by expanding the samples, not only in the field of paediatric nursing, but also in all nursing fields.
Hayli CM; Kosem DD; Bor NA
International Journal of Palliative Nursing
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/10.12968/ijpn.2024.30.1.20" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2024.30.1.20</a>
"We Want to Talk about Death, Dying and Grief and to Learn about End-of-Life Care"-Lessons Learned from a Multi-Center Mixed-Methods Study on Last Aid Courses for Kids and Teens
child; Adolescent; Terminal Care; terminal care; adult; article; human; male; palliative therapy; aged; Europe; Australia; grief; interview; education; dying; adolescent; questionnaire; curriculum; awareness; literacy
Background: Last Aid Courses (LAC) for adults have been established in 21 countries in Europe, Australia and America to improve the public discussion about death and dying and to empower people to participate in end-of-life care provision. In 2018, the first Last Aid Courses for kids and teens (LAC-KT) were introduced. The aim of the study was to explore the views and experiences of the course participants and Last Aid Course instructors on the LAC-KT. Methods: A mixed-methods approach was used. The views of the LAC-KT participants, aged 7 to 17 years, on the LAC-KT were collected using a questionnaire. In addition, the experiences of the Last Aid Course instructors were explored in focus group interviews. Results: The results show that 84% of the participants had experiences with death and dying and 91% found the LAC-KT helpful for everyone. The majority of the participants appreciate the opportunity to talk and learn about death, dying, grief and palliative care. Conclusions: The LAC-KT is feasible, very well accepted and a welcome opportunity for exchanging and obtaining information about dying, grief and palliative care. The findings of the study indicate that the LAC-KT should be offered to all interested children and teenagers and included in the school curriculum.
Bollig G; Graf K; Gruna H; Drexler D; Pothmann R
Children
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/children11020224" target="_blank" rel="noreferrer noopener">10.3390/children11020224</a>
PRECIOUS demonstrated satisfactory measurement properties for assessing the quality of care for children with serious illnesses
child; adult; article; female; human; major clinical study; male; palliative therapy; hospitalization; follow up; adolescent; therapy; caregiver support; correlation coefficient; psychometry; Cronbach alpha coefficient; internal consistency; person centered care; convergent validity; exploratory factor analysis; root mean squared error; test retest reliability
Objective: To determine the measurement properties of PRECIOUS, a parent-reported measure of Quality of Care (QoC) for seriously ill children across care settings and illness trajectories. Study design and setting: Parents self-administered baseline and two-week follow-up surveys online. Exploratory Factor Analysis (EFA) was used to determine PRECIOUS's factor structure and select items. Internal consistency was evaluated with Cronbach's α, test-retest reliability with intraclass correlation coefficients (ICCs), and convergent validity with Spearman's correlations between PRECIOUS scales and subscales of Measure of Processes of Care (MPOC-20) and Quality of Children's Palliative Care Instrument (QCPCI). Results: Of 152 parents [108 (71%) mothers, 44 (29%) fathers] who completed the baseline survey, 123 (81%) completed follow-up. EFA grouped PRECIOUS into 5 scales: Collaborative and goal-concordant care (12 items), Caregiver support and respectful care (15 items), Access to financial and medical resources (5 items), Reducing caregiving stressors (9 items), and Hospitalization-specific processes (4 items). Root Mean Square Error of Approximation was 0.040 and Comparative Fit Index was 0.980. Cronbach's α ranged from 0.85 to 0.96. ICCs ranged from 0.72 to 0.86. Significant correlations with MPOC-20 and QCPCI confirmed convergent validity. The original 56-item tool was reduced to 45-items. Conclusion: PRECIOUS demonstrates satisfactory measurement properties for assessing QoC for seriously ill children.
Ang FJL; Bun Cheung Y; Gandhi M; Ostbye T; Malhotra C; Malhotra R; Cristelle Chow CT; Heng Chong P; Amin Z; Teresa Tan SZ; Tewani K; Hanim Buang SN; Finkelstein EA
Journal of Clinical Epidemiology
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/10.1016/j.jclinepi.2024.111286" target="_blank" rel="noreferrer noopener">10.1016/j.jclinepi.2024.111286</a>
Qualitative Study of Nurses' Experiences as They Learned to Provide Neonatal Palliative Care
neonatal intensive care unit; newborn intensive care; nurse; nursing education; palliative therapy; qualitative research; adult; article; Canadian; clinical article; curriculum; female; human; immersion; Infant Newborn; interview; male; meaning-making; neonatal nurse; newborn; Palliative Care; thematic analysis; therapy
Objective: To describe the experiences of nurses as they learned to provide palliative care in the NICU. Design: Interpretive description. Setting: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers. Participants: Nine NICU nurses with 3 to 21 years of experience who provided neonatal palliative care. Methods: We collected data using online interviews that we recorded and transcribed. We analyzed data using immersion, inductive coding, reflective memoing, and thematic analysis. Results: Participants received little or no formal education in neonatal palliative care and instead learned to provide this care through observation and experience. Participants said it was important to find meaning in their work, which contributed to their motivation to learn to provide high-quality neonatal palliative care. Participants described challenges, including unit cultures in which early palliative care was not embraced. We identified three overarching themes that represented the participants' experiences: Meaning-Making in Neonatal Palliative Care, Challenges in Providing Neonatal Palliative Care, and Ill-Prepared to Provide Neonatal Palliative Care. Conclusion: Standardized education may improve the quality of care and nurses' experiences with neonatal palliative care. We recommend designing and evaluating a standardized curriculum on neonatal palliative care.
St Louis J; Raffin-Bouchal S; Benzies K; Sinclair S
Journal of Obstetric, Gynecologic, and Neonatal 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.jogn.2023.12.005" target="_blank" rel="noreferrer noopener">10.1016/j.jogn.2023.12.005</a>
The funding of specialised paediatric palliative care in Switzerland: a conceptualisation and modified Delphi study on obstacles and priorities
Delphi study; funding; modified Delphi study; palliative therapy; pediatrics; Switzerland; adult; aged; article; clinical practice; consensus development; Delphi Technique; evidence based medicine; female; health care cost; health care delivery; health service; human; male; Palliative Care; practice guideline; program effectiveness; program sustainability; reimbursement; Switzerland
BACKGROUND: Effective funding models are key for implementing and sustaining critical care delivery programmes such as specialised paediatric palliative care (SPPC). In Switzerland, funding concerns have frequently been raised as primary barriers to providing SPPC in dedicated settings. However, systematic evidence on existing models of funding as well as primary challenges faced by stakeholders remains scarce. AIMS: The present study’s first aim was to investigate and conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. Its second aim was to identify obstacles to and priorities for funding these programmes sustainably. METHODS: A 4-step process, including a document analysis, was used to conceptualise the funding of hospital-based consultative SPPC programmes in Switzerland. In consultation with a purposefully selected panel of experts in the subject, a 3-round modified Delphi study was conducted to identify funding-relevant obstacles and priorities regarding SPPC. RESULTS: Current funding of hospital-based consultative specialised paediatric palliative care programmes is complex and fragmented, combining funding from public, private and charitable sources. Overall, 21 experts participated in the first round of the modified Delphi study, 19 in round two and 15 in round three. They identified 23 obstacles and 29 priorities. Consensus (>70%) was obtained for 12 obstacles and 22 priorities. The highest level of consensus (>90%) was achieved for three priorities: the development of financing solutions to ensure long-term funding of SPPC programmes; the provision of funding and support for integrated palliative care; and sufficient reimbursement of inpatient service costs in the context of high-deficit palliative care patients. CONCLUSION: Decision- and policy-makers hoping to further develop and expand SPPC in Switzerland should be aware that current funding models are highly complex and that SPPC funding is impeded by many obstacles. Considering the steadily rising prevalence of children with life-limiting conditions and the proven benefits of SPPC, improvements in funding models are urgently needed to ensure that the needs of this highly vulnerable population are adequately met.
Mitterer S; Zimmermanna K; Fink G; Simon M; Gerber AK; Bergstrasser E
Swiss Medical Weekly
2023
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<a href="http://doi.org/10.57187/s.3498" target="_blank" rel="noreferrer noopener">10.57187/s.3498</a>
Thirty-day mortality as a metric for palliative radiotherapy in pediatric patients
mortality; palliative therapy; pediatric patient; adult; article; biological marker; child; female; human; male; Metronidazole; patient care; patient referral; quality of life; radiotherapy; Radiotherapy; terminally ill patient
Purpose of review: Thirty-day mortality (30DM) is an emerging consideration for determining whether terminally ill adult patients may benefit from palliative radiotherapy (RT). However, the efficacy and ethics of delivering palliative RT at the end of life (EOL) in children are seldom discussed and not well-established. Recent findings: Palliative RT is perhaps underutilized among patients ≤21 years old with rates as low as 11%. While effective when delivered early, clinical benefit decreases when administered within the last 30 days of life. Pediatric 30DM rates vary widely between institutions (0.7-30%), highlighting the need for standardized practices. Accurate prognosis estimation remains challenging and prognostic models specific to palliative pediatric patients are limited. Discordance between provider and patient/parent perceptions of prognosis further complicates decision-making. Summary: RT offers effective symptom control in pediatric patients when administered early. However, delivering RT within the last 30 days of life may provide limited clinical benefit and hinder optimal EOL planning and care. Early referral for palliative RT, preferably with fewer fractions (five or fewer), along with multidisciplinary supportive care, optimizes the likelihood of maintaining patients' quality of life. Prognosis estimation remains difficult, and improving patient and family understanding is crucial. Further research is needed to refine prognostic models and enhance patient-centered care.
Keit E; Nanda R; Johnstone PAS
Current Opinion in Supportive and Palliative Care
2023
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<a href="http://doi.org/10.1097/SPC.0000000000000686" target="_blank" rel="noreferrer noopener">10.1097/SPC.0000000000000686</a>
Parents' participation in collegial meetings to discuss withholding or withdrawing treatment for their newborn: Working to improve information-sharing
decision making; life sustaining treatment; parent; adult; advisory committee; child; conference paper; female; follow up; grief; human; Infant Newborn; Information Dissemination; newborn; refusal to participate; retrospective study; terminal care; Withholding Treatment
Aim: The role of parents in decision-making concerning their child's end-of-life care is not clearly defined. Their participation is encouraged by ethical reflection, in particular by the CCNE (French National Ethics Advisory Committee), but laws are limited to imposing a duty to provide information to doctors. Decisions are taken at the end of a collegial meeting (CM) intended to better inform the child's referring physician (RP) who is in charge of the final decision following the French law. The aim of this study was to describe the support provided to bereaved families after they had been invited to attend a CM concerning their child, if they so wished. Additional aims were to determine the differences resulting from their acceptance or their refusal to participate as regards their perception of their child's history and as regards their grieving process. Material and method: We conducted a retrospective study of all CMs held between November 2016 and May 2021, drawing a distinction between proposals made or not made to parents and their decision to accept or refuse. Results: In total, 49 CMs concerning 46 children were held during the study period. The proposal was not made to the parents in three cases; the parents chose to be present in 28 cases. The psychological follow-up (15/28 parents attending, 10/16 parents absent) illustrated that their presence enabled them to reflect on their child's death after having listened to and understood the reasons why it happened. They did not dispute the team's approach or decisions taken. Conclusion: It is possible to include parents in CMs if they so wish. It would appear more beneficial than merely providing them with the information required. Studies must be carried out to ensure potential long-term benefit.
Boize P; Garner Y; Neaud E; Borrhomee S
Archives de Pediatrie
2024
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<a href="http://doi.org/10.1016/j.arcped.2023.10.004" target="_blank" rel="noreferrer noopener">10.1016/j.arcped.2023.10.004</a>
Newborn Care Curriculum: Palliative Care for the Newborn
procedures; adult; curriculum; education; feedback system; female; human; Infant Newborn; male; medical student; neonatal intensive care unit; neonatology; newborn; organization and management; palliative therapy; teaching
Introduction: Because pediatric hospitalists have increasing responsibilities in newborn hospitalization, training in perinatal palliative care is beneficial. A 2015 needs assessment revealed 68% of surveyed pediatric hospitalists were interested in more education on this topic. Thus, this learning module was designed to provide a concise, easy-to-use introduction to palliative care for the newborn. <br/>Method(s): This module was developed as part of the computer-based Newborn Care Curriculum to fill a gap in educational resources on perinatal palliative care. The primary tool in this learning module is a PowerPoint slide show with a script in the notes section. Using the presenter mode to view the PowerPoint slide show allows the learner to simultaneously view the slides and read the script for instruction. This module was tested by members of the pediatric hospitalist division at Children's National Health System in Washington, DC. Participants completed a pretest, posttest, and module evaluation. While tested as a self-study tool, the module may also be used in a small-group teaching setting. <br/>Result(s): The module was well received during the trial. The average posttest score was 96%, compared to pretest scores of 90%. Learners' comments were overwhelmingly positive, and constructive feedback has been addressed. <br/>Discussion(s): This module provides pediatric hospitalists and others who care for newborns with a well-received introduction to perinatal palliative care. The computer-based format of the module adds to its uniqueness and utility.
Anspacher M; Burd A; Stroh J; Conroy R
MedEdPORTAL
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/10.15766/mep_2374-8265.10639" target="_blank" rel="noreferrer noopener">10.15766/mep_2374-8265.10639</a>
A psychological experience assessment protocol of parent caregivers in paediatric palliative care
child; adult; article; human; social support; palliative therapy; clinical article; caregiver; parent; Portugal; United Kingdom; therapy; questionnaire; coping behavior; semi structured interview; vulnerability; psychologic assessment; Coping Strategy Questionnaire
Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence of an illness, and therefore several studies have tended to focus on the adaptation of parent caregivers. The aim of the present study is to present a psychological experience assessment protocol of parents in PPC. Methods: It consists of a socio-demographic and clinical questionnaire and a semi-structured interview based on an incomplete narrative deriving from the Unwanted Guest Metaphor. Results: On the basis of the latter, 10 dimensions of the experience in the parental subsystem were explored through parents' own perspective, namely: confrontation with the diagnosis; representation of the illness; emotional impact; day-to-day challenges; family impact; resources and social support; coping strategies; posttraumatic growth; representation of the sick child; and future perspectives. Discussion: The protocol can be used in person or remotely and its application enables the identification of specific needs and the establishment of psychotherapeutic goals and strategies for each family, thus enhancing their well-being and resilience, from an eco-systemic perspective. Conclusions: The protocol is presented in detail and its importance in the context of research and systemic intervention in PPC is discussed.
Nogueira AJ; Ribeiro MT
Annals of Medicine
2023
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<a href="http://doi.org/10.1080/07853890.2023.2268093" target="_blank" rel="noreferrer noopener">10.1080/07853890.2023.2268093</a>
The NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care
child; adult; article; controlled study; human; male; newborn; palliative therapy; newborn death; perinatal death; terminal care; total quality management; systematic review; interview; newborn intensive care; health care personnel; therapy; Delphi study
Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals, parents may make the decision to stop active treatment and focus on ensuring their baby has a 'good' death. There is very little evidence to support the clinical application of neonatal palliative care and/or end-of-life care, resulting in variation in clinical provision between neonatal units. Developing core outcomes for neonatal palliative care would enable the development of measures of good practice and enhance our care of families. The aim of this study is to develop a core outcome set with associated tools for measuring neonatal palliative care. Method: This study has four phases: (1) identification of potential outcomes through systematic review and qualitative interviews with key stakeholders, including parents and healthcare professionals (2) an online Delphi process with key stakeholders to determine core outcomes (3) identification of outcome measures to support clinical application of outcome use (4) dissemination of the core outcome set for use across neonatal units in the UK. Key stakeholders include parents, healthcare professionals, and researchers with a background in neonatal palliative care. Discussion: Developing a core outcome set will standardise minimum reported outcomes for future research and quality improvement projects designed to determine the effectiveness of interventions and clinical care during neonatal palliative and/or end-of-life care. The core outcome set will provide healthcare professionals working in neonatal palliative and/or end-of-life support with an increased and consistent evidence base to enhance practice in this area. Trial registration: The study has been registered with the COMET initiative ( https://www.comet-initiative.org/Studies/Details/1470 ) and the systematic review is registered with the International Prospective Register of Systematic Reviews (PROSPERO) (CRD42023451068).
Gallagher K; Chant K; Mancini A; Bluebond-Langner M; Marlow N
BMC Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-023-01326-x" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01326-x</a>
A Qualitative Study of Parents' Experiences of Bonding in End-of-Life Care in a Neonatal Intensive Care Unit
child; diagnosis; terminal care; adult; article; human; newborn; clinical article; interview; content analysis; parent; pilot study; qualitative research; newborn intensive care; neonatal intensive care unit; health care personnel; infant; decision making; powerlessness; parenthood; shame
To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a neonatal intensive care unit. Methods: The interviews were pilot processed using inductive content analysis and then processed again using deductive content analysis with the attachment theory applied as a theoretical frame. Results: Three main themes emerged from the parents' descriptions: 1. The parents' relationship with the healthcare provider: an alliance between the parent and the healthcare provider can facilitate communication, for example, the use of proposals to promote parents' role in the care; 2. The parents' relationship with the infant: parents' wish to fulfill the role of a protective parent, and it is of importance for the parents' future well-being to take part in care and decision making; and 3. The parents' relationship with the own self: in this unknown situation, parents' expectations of parenthood are broken, and they experience feelings of shame and powerlessness. Conclusion: The relationship between the parent and the healthcare provider affects how the parents bond with their child and their experiences of the healthcare.
Funkquist EL; Lindquist A; Edner A
Journal of Perinatal & Neonatal 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/10.1097/JPN.0000000000000780" target="_blank" rel="noreferrer noopener">10.1097/JPN.0000000000000780</a>
Understanding Adult Hospices Caring for Children in California, 2018-2021
child; adult; article; female; human; male; retrospective study; economics; care behavior; nurse; hospice care; medicaid; California; home health agency; latitude; longitude; urban population
In areas where there are absences of pediatric hospice care, adult hospices are often asked to provide hospice care for children. Little is known about these adult hospices. The purpose of our study was to describe the characteristics of adult hospices in California that provided care to children from 2018 to 2021. Using public data from the California Home Health Agencies and Hospice Annual Utilization Report, we conducted a longitudinal, retrospective descriptive study to examine the effects of hospice characteristics on adult hospices which provide care to children. Market, mission, operational, and financial characteristics were measured via the California utilization data using descriptive statistics. Service area was measured via latitude and longitude public data. Hospice location maps were generated for year 2018 and year 2021. The 148 hospices in the study had distinct organizational profiles, mainly small, with broad service coverage areas, in rural and urban communities with predominantly nurses visiting children. There was a significant decline (32%) in availability of adult hospices caring for children between 2018 and 2021, particularly in northern California. Hospice economics, lack of familiarity with Medicaid, and staff comfortability with caring for children in hospice, were not driving this decline. Our study provides critical insight into the characteristics of adult hospices in California providing care for children and has important policy implications.
Davis HA; Weaver MS; Torkildson C; Lindley LC
American 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/10.1177/10499091231204941" target="_blank" rel="noreferrer noopener">10.1177/10499091231204941</a>
A shared decision-making model in pediatric palliative care: a qualitative study of healthcare providers
child; adult; article; controlled study; human; male; palliative therapy; knowledge; health care personnel; physician; qualitative research; social worker; phenomenology; decision making; semi structured interview; nurse; shared decision making; conceptual model; family centered care; pharmaceutics
Pediatric shared decision-making (SDM) is a fundamental part of family-centered care. Pediatric palliative care (PPC) is one of the more difficult fields for healthcare providers when choosing to utilize SDM. However, to our knowledge, there are still few structured approaches of SDM in PPC. We aimed to build a model of SDM in PPC that achieves better care and outcomes for children and their family members. Methods: This study is a descriptive phenomenology study. Participants included physicians, nurses, and social workers in the PPC team. Participants were individually interviewed face-to-face or via an online meeting software. Data were collected in semi-structured interviews and analyzed using a thematic framework analysis. Results: In total, 27 healthcare providers were interviewed. The model of SDM in PPC identified three themes, including the participants, the principle and the process of SDM. Decision participants involved the children, parents, the PPC team and others. The decision principle had three sub-themes including type, standard and precondition. The decision process describes the fundamental process of SDM and provides suggestions for mobilizing patients and parents to engage in decision-making and seeking conflict resolution. Conclusions: This is the first study to develop a SDM model in PPC. This model can provide guidance to PPC teams on SDM practices. In addition, the model contributes to the existing body of knowledge by providing a conceptual model for SDM in the context of PPC.
Cai S; Cheng L; Wang R; Zhou X; Peng 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/s12904-023-01307-0" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01307-0</a>
Real World Presentation and Treatment Outcomes with a Predominant Induction Chemotherapy Based Approach in Nasopharyngeal Carcinoma: A Sixteen Year Report from a Teaching Hospital in India
child; adult; article; cohort analysis; female; human; major clinical study; male; retrospective study; aged; hospitalization; India; follow up; cancer recurrence; overall survival; adolescent; hearing impairment; diplopia; adjuvant therapy; smoking; multiple cycle treatment; overall response rate; progression free survival; thrombocytopenia; headache; diarrhea; histopathology; intensity modulated radiation therapy; anemia; vomiting; cancer staging; teaching hospital; palliative chemotherapy; carboplatin/cb [Drug Combination]; carboplatin/dt [Drug Therapy]; cisplatin/ae [Adverse Drug Reaction]; cisplatin/cb [Drug Combination]; cisplatin/dt [Drug Therapy]; gemcitabine/dt [Drug Therapy]; paclitaxel/cb [Drug Combination]; paclitaxel/dt [Drug Therapy]; treatment outcome; cyclophosphamide/cb [Drug Combination]; cyclophosphamide/dt [Drug Therapy]; mucosa inflammation; antiemetic agent; treatment interruption; date of death; survival prediction; neck dissection; hypothyroidism; induction chemotherapy; nasopharynx carcinoma/dt [Drug Therapy]; nasopharynx carcinoma/rt [Radiotherapy]; nasopharynx carcinoma/su [Surgery]; albumin/ec [Endogenous Compound]; bone metastasis; capecitabine/dt [Drug Therapy]; cervical lymph node; chemoradiotherapy; cisplatin/to [Drug Toxicity]; cobalt therapy; cranial nerve paralysis; distant metastasis; docetaxel/cb [Drug Combination]; docetaxel/dt [Drug Therapy]; dysphasia; epirubicin/cb [Drug Combination]; epirubicin/dt [Drug Therapy]; exophthalmos; febrile neutropenia; fluorouracil/cb [Drug Combination]; fluorouracil/dt [Drug Therapy]; liver metastasis; lung metastasis; neck swelling; neutropenia; nose obstruction; peripheral neuropathy; primary tumor/rt [Radiotherapy]; radiotherapy dosage; salvage therapy; spinal cord; toxicity/si [Side Effect]; trismus; xerostomia
Introduction: Nasopharyngeal carcinoma (NPC) is a rare malignancy in India except in north-eastern states. We present our institutional experience of 16 years highlighting management, outcomes, responses and toxicities. Material(s) and Method(s): NPC patients registered at our center during the period of 2000-2015. The primary objective of the study was to assess the overall survival (OS). Secondary outcome included determinations of response rates, progression free survival (PFS) and to assess treatment-related toxicity (CTCAE v4.0). Institute ethics committee approval was obtained prior to initiation of this study. Result(s): Data was retrieved from complete records of 222 patients out of 390 registered during study period. There were 163 males (73.4%) and 59 females (26.6%) with a male to female ratio of 2.8:1. The median age was 35 years (range 6-73). Only 5.6% (n = 12) presented in early-stage disease (stage I and II) while 89.6% (n = 199) were advanced stage (stage III, IVA, IVB). Five patients (2.2%) presented as metastatic disease. Majority of patients were treated with induction chemotherapy followed by concurrent chemoradiation (CCRT) {76.1%, n = 169}. Relapses were documented in 10.4% patients. 5% patients had loco-regional relapse while distant metastases were seen in 4% patients. The 3-year PFS and OS rates are 60.9% and 68.4%, respectively. Achieving a CR predicted superior OS on multivariate analysis. Conclusion(s): NPC is a rare malignancy and majority presented with advanced stages. This data outlines our experience and outcomes with a predominantly induction chemotherapy followed by definitive CCRT based approach.Copyright © 2022 Taylor & Francis Group, LLC.
Gogi R; Sharma A; Mohanti BK; Pramanik R; Bhasker S; Biswas A; Thakar A; Singh AC; Sikka K; Kumar R; Thulkar S; Bahadur S
Cancer Investigation
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/10.1080/07357907.2022.2141771" target="_blank" rel="noreferrer noopener">10.1080/07357907.2022.2141771</a>
Children's understanding of dying and death: A multinational grounded theory study
Child; child; adult; article; controlled study; female; human; male; palliative therapy; sibling; clinical article; interview; Only Child; multicenter study; adolescent; thinking; qualitative research; religion; grounded theory; genetic transcription; Uganda; Haiti; altruism; vocabulary
OBJECTIVES: The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which children directly involved with life-limiting conditions understand dying and death. <br/>METHOD(S): This qualitative study obtained interview data from N = 44 5-18-year-old children in the USA, Haiti, and Uganda who were pediatric palliative care patients or siblings of patients. Of these, 32 were children with a serious condition and 12 were siblings of a child with a serious condition. Interviews were recorded, transcribed, verified, and analyzed using grounded theory methodology. <br/>RESULT(S): Loss of normalcy and of relationships emerged as central themes described by both ill children and siblings. Resilience, altruism, and spirituality had a bidirectional relationship with loss, being strategies to manage both losses and anticipated death, but also being affected by losses. Resiliency and spirituality, but not altruism, had a bidirectional relationship with anticipating death. Themes were consistent across the 3 samples, although the beliefs and behaviors expressing them varied by country. SIGNIFICANCE OF RESULTS: This study partially fills an identified gap in research knowledge about ways in which children in 3 nations understand dying and death. While children often lack an adult vocabulary to express thoughts about dying and death, results show that they are thinking about these topics. A proactive approach to address issues is warranted, and the data identify themes of concern to children.
McPoland P; Grossoehme DH; Sheehan DC; Stephenson P; Downing J; Deshommes T; Gassant PYH; Friebert S
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/S1478951523000287" target="_blank" rel="noreferrer noopener">10.1017/S1478951523000287</a>
Use of paclitaxel to successfully treat children, adolescents, and young adults with Kaposi sarcoma in southwestern Tanzania
child; Adolescent; adult; article; cohort analysis; female; human; major clinical study; male; retrospective study; quality of life; treatment duration; young adult; follow up; cancer palliative therapy; cancer recurrence; cancer survival; adolescent; treatment outcome; trend study; virus load; multiple cycle treatment; cancer combination chemotherapy; doxorubicin/cb [Drug Combination]; doxorubicin/dt [Drug Therapy]; vincristine/cb [Drug Combination]; vincristine/dt [Drug Therapy]; treatment planning; long term survival; Tanzania; Kaposi sarcoma/dt [Drug Therapy]; paclitaxel/dt [Drug Therapy]; antiretroviral therapy; antiretrovirus agent/dt [Drug Therapy]; bleomycin/cb [Drug Combination]; bleomycin/dt [Drug Therapy]; bleomycin/iv [Intravenous Drug Administration]; dexamethasone/dt [Drug Therapy]; drug contraindication; Human immunodeficiency virus infection/dt [Drug Therapy]; lack of drug effect; vincristine/iv [Intravenous Drug Administration]; Paclitaxel
Treating Kaposi sarcoma (KS) in children, adolescents, and young adults (AYA) remains a challenge in low-and middle-income countries (LMIC) where chemotherapy options and availability are limited. We describe a retrospective cohort review of pediatric patients with KS treated with paclitaxel in Mbeya, Tanzania, between 1 March 2011 and 31 December 2019. Paclitaxel was given to patients who had KS relapse, a contraindication to bleomycin, vincristine, and doxorubicin (ABV), special circumstances in which a clinician determined that paclitaxel was preferable to ABV, or experienced treatment failure, defined as persistent KS symptoms at the completion of treatment. All patients also received multidisciplinary palliative care. Seventeen patients aged 5.1-21.3 years received paclitaxel, of whom 47.1% (8/17) had treatment failure, 29.4% (5/17) received paclitaxel as initial treatment, and 23.5% (4/17) had relapsed. All HIV positive patients (16/17) were given anti-retroviral therapy (ART) and 87.5% (14/16) achieved viral load <1000 cp/mL. At censure, 82.3% (14/17) of patients were alive-71.4% (10/14) achieved complete clinical remission and 28.6% (4/14) achieved a partial response. The median follow up was 37.3 months (range 8.0-83.5, IQR 19.7-41.6), and no patients were lost to follow up. In this cohort, high rates of long-term survival and favorable outcomes were possible with paclitaxel treatment.Copyright © 2021 by the authors. Licensee MDPI, Basel, Switzerland.
Adinani H; Campbell L; El-Mallawany NK; Slone J; Mehta P; Bacha J
Children
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/10.3390/children8040275" target="_blank" rel="noreferrer noopener">10.3390/children8040275</a>
Children with palliative care needs in Papua New Guinea, and perspectives from their parents and health care workers: a qualitative study
Child; child; Palliative Care; adult; article; controlled study; female; human; male; preschool child; palliative therapy; clinical article; interview; parent; Only Child; school child; health care personnel; qualitative research; descriptive research; child health care; health care quality; pediatric ward; adolescent; infant; thematic analysis; medical record; knowledge gap; health care need; Papua New Guinea; acute lymphoblastic leukemia/di [Diagnosis]; bronchiectasis/di [Diagnosis]; cerebral palsy/di [Diagnosis]; congenital heart disease/di [Diagnosis]; congenital malformation/di [Diagnosis]; dyspnea/co [Complication]; germ cell tumor/di [Diagnosis]; Guillain Barre syndrome/di [Diagnosis]; hemosiderosis/di [Diagnosis]; Human immunodeficiency virus infection/di [Diagnosis]; job experience; malignant neoplasm/di [Diagnosis]; Melanesia; neuroblastoma/di [Diagnosis]; Pacific islands; pain/co [Complication]; pulmonary hypertension/di [Diagnosis]; retinoblastoma/di [Diagnosis]; thalassemia/di [Diagnosis]; tuberculosis/di [Diagnosis]
Introduction: The World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be provided even when curative attempts are being utilised. In Papua New Guinea, as in other low- and middle-income countries there is a lack of services and training on PPC. This study aims to describe the characteristics of children with palliative care needs and to assess the perspectives of their parents and health care workers. Methods: A descriptive qualitative study was carried out over 5 months in 2022 at the Port Moresby General Hospital children's wards. Clinical information was gathered from the admission charts of children with life threatening and life limiting conditions and a recorded interview was carried out with the children's parents. A focus group interview with 10 experienced nurses caring for these children was video recorded. The recorded interviews were subjected to thematic analysis. Results: Twenty children and their parents were included in this study. Nine had a cancer diagnosis and 11 had a chronic progressive condition. The common clinical characteristics of children with palliative care needs were pain (n = 9) and shortness of breath (n = 9), and most children had more than one symptom. Several themes were identified in the parent interviews. Most parents could not name their child's diagnosis, but they were able to correctly describe their child's condition using their own terms. Most parents felt involved in their child's management and were satisfied with the care provided. Parents were psychologically affected by their child's situation but were hopeful that God and the medicines would heal their child. Ten nurses were involved in a focus-group interview. Most nurses' understanding of palliative care was from experience not from formal training, but most felt confident in identifying the physical, emotional, and spiritual needs of the children. Understanding of analgesia was limited, as was the availability of appropriate medications included in the WHO Analgesic Ladder. Conclusion: There is a need for a systematic approach to palliative care in Papua New Guinea. Palliative care can be integrated into an overall approach to quality of paediatric care. It is relevant to a broad section of children with severe chronic or malignant conditions and can be carried out with limited resources. It does require some resources, further training and education, and increased provision of basic drugs for symptom control.
Watch V; Anga G; Kilalang C; Pulsan F; Vince JD; Duke T
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/s12904-023-01177-6" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01177-6</a>
Exploring the Palliative Care Needs of Children in Refugee Settlements in Uganda
Child; child; Palliative Care; adult; human; chronic disease; palliative therapy; needs assessment; data analysis; Only Child; distress syndrome; conference abstract; refugee; Uganda; Uganda; thermometer; mentor; refugee camp
Background/aims: Palliative care for children should be provided wherever the child is who needs care, whether that be at home, at school, in a clinic, in a hospital, in a hospice, as well as including in humanitarian settings. It should be provided by all health providers and not just by palliative care specialists. Since 2016 the importance of palliative care within humanitarian crises settings has been recognised, with palliative care being included in the SPHERE handbook in 2018 and the ongoing development of guidelines for paediatric palliative care in organisations such as Medicines San Frontieres (MSF) and the publication of a handbook by the World Health Organization. However, there has been minimal data with regards to the need for palliative care provision in humanitarian settings. Work in several countries is ongoing to understand the needs of people - both adults and children, living with chronic diseases amongst refugee communities. In Uganda there are approximately 1.45 million refugees, 59% of whom are children. This paper will report on some of the work being undertaken in Uganda to explore the palliative care needs of children in refugee settlements. <br/>Method(s): Mixed methods study in refugee populations including rapid participatory appraisal, training and mentorship and needs assessment undertaken between 2018 and 2022, in host and refugee populations in Obongi and Adjumani Districts, Northern Uganda. Tools used include the children's palliative outcome scale, the distress thermometer and ECOG. Ethical approval was gained from UNCST and children with unmet clinical needs were signposted for support. <br/>Result(s): The results of several studies undertaken in Northern Uganda will be reported on. Initial data suggests high levels of need for children's palliative care, with significant unmet PC need and high levels of distress amongst children and their families. Data analysis is ongoing and initial results will be shared in this presentation. <br/>Conclusion(s): It is essential that we address the palliative care needs of children living in humanitarian settings. Yet little is known of the magnitude of the need for children's palliative care in such settings, nor the burden of unmet need. Studies such as this one will contribute to the evidence base for providing palliative care for children in humanitarian settings beyond that of anecdotal accounts and contribute towards recommendations for the provision of children's palliative care in humanitarian settings.
Downing J; Santiago T; Opia V; Oziti G; Namukwaya E; Nabirye L; Maku S; Nalutaaya F; Bagasha P; Smith C; Ikong H; Venkatesh C; Howarth K; McGeough K; Grant L; Leng M
Palliative Medicine
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</a>
The views and experiences of fathers regarding their young child's intellectual and developmental disability diagnosis: Findings from a qualitative study.
Humans; Child; Child, Preschool; Female; Male; Middle Aged; Adult; Qualitative Research; Attitude of Health Personnel; Developmental Disabilities/di [Diagnosis]; Intellectual Disability/di [Diagnosis]; *Fathers/px [Psychology]; *Intellectual Disability/px [Psychology]; *Developmental Disabilities/px [Psychology]
AIMS AND OBJECTIVES: To report the views and experiences of fathers following their child's diagnosis of an intellectual and developmental disability (IDD)., BACKGROUND: There is a growing interest in understanding the experiences of fathers of children with IDD given the transformation of the structural change of fathers' roles within the family and wider society., DESIGN: A qualitative design was used to elicit the view and experiences of fathers., METHODS: A total of ten Irish fathers participated in face-to-face interviews. The data were thematically analysed. The COREQ guidelines for reporting qualitative studies were used in the development of this paper., RESULTS: The key themes that emerged were (a) the confirmation of the child's diagnosis (b) the impact of the diagnosis and (c) father's motivation to participate in disability research., CONCLUSIONS: This study informs and develops a further understanding of the international evidence base of fathers receiving a confirmation of a child's diagnosis of an intellectual and developmental disability, the impact of the diagnosis on fathers and their motivation to share their stories to add to the disability research. Health and social care practitioners have important contributions to make in meeting the needs of fathers. There are specific areas to consider in terms of practice, education and research that require further attention and development to ensure fathers' distinct needs regarding their child's diagnosis of IDD are known and responded to effectively., RELEVANCE TO CLINICAL PRACTICE: This study highlights that when the child's disability is confirmed, fathers experience a diverse range of mixed emotions. Health and social care practitioners including nurses need to be aware of the impact of the diagnosis upon fathers. There is scope to develop the knowledge, skills and confidence of health and social care practitioners regarding the experiences of fathers and how they can further support fathers and their families during the critical time of a disability disclosure. Copyright © 2020 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.
Marsh, Lynne; Brown, Michael; McCann, Edward
Journal of Clinical Nursing
2020
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<a href="http://doi.org/10.1111/jocn.15368" target="_blank" rel="noreferrer noopener">10.1111/jocn.15368</a>
Fathers' experiences of their child's life-limiting condition: An attachment narrative perspective.
Humans; Child; Female; Male; Adolescent; Middle Aged; Adult; Qualitative Research; *Object Attachment; *Fathers/px [Psychology]; *Chronic Disease/px [Psychology]; *Father-Child Relations
When a child has a life-limiting illness, parental involvement is amplified, having to respond to the increased needs of the child. Both parents are affected by the illness, yet research has largely under-represented fathers' experiences of their child's illness. Seven fathers were interviewed about their experiences with their child's life-limiting illness. In addition, fathers' attachment strategies were assessed using the Adult Attachment Interview. Narrative analysis was implemented to explore the interviews, and indicators of attachment markers employed in the Adult Attachment Interview were also identified. The dominant themes were found to be 'experience of the diagnosis', 'living with the illness', 'struggling with emotions' and 'relationship with staff'. Within each theme, there were differences which related to the father's attachment strategies. This was particularly evident in parts of their narratives recounting critical moments of threat and anxiety in the course of discovering and adjusting to their child's illness. Importantly, the findings also suggested that the experience for the fathers stressed, and in some cases disrupted, their attachment coping strategies. All fathers told stories of trying to get it right for their children and family. Their experiences of, and adjustment to, the illness were related to their attachment strategies. The clinical implications for health professionals are discussed.
Bailey-Pearce, Oliver; Stedmon, Jacqui; Dallos, Rudi; Davis, George
Clinical Child Psychology and Psychiatry
2018
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<a href="http://doi.org/10.1177/1359104517730115" target="_blank" rel="noreferrer noopener">10.1177/1359104517730115</a>
We would have missed out so much had we terminated': What fathers of a child with Down syndrome think about current non-invasive prenatal testing for Down syndrome.
Humans; Child; Male; Adult; Qualitative Research; *Health Knowledge, Attitudes, Practice; *Choice Behavior; *Fathers; *Father-Child Relations; *Down Syndrome/di [Diagnosis]; *Noninvasive Prenatal Testing
Non-invasive prenatal testing (NIPT) allows early, accurate diagnosis of Down syndrome that has resulted in increased terminations. This qualitative study involved in-depth interviews of fathers of children with Down syndrome about their views on the availability of NIPT. Thematic network analysis revealed that although fathers appreciated an early diagnosis with NIPT, they saw the test as being a predetermined pathway to termination. Fathers felt that expectation to terminate reflects negative societal attitudes towards those with Down syndrome and disability, fearing that NIPT may become a form of eugenics. Fathers retrospectively contrasted these attitudes with the actual reality of raising their children with Down syndrome, which they described as bringing joy to their lives. Findings suggest that although fathers valued NIPT as an information-giving tool that allowed autonomous parental choices about the pregnancy, they believe that it should be accompanied by balanced information about the reality of raising a child with Down syndrome.
How, Bethea; Smidt, Andy; Wilson, Nathan J; Barton, Rebecca; Valentin, Chelsea
Journal of Intellectual Disabilities
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1744629518787606" target="_blank" rel="noreferrer noopener">10.1177/1744629518787606</a>
Shutting the World Out': An Interpretative Phenomenological Analysis Exploring the Paternal Experience of Parenting a Young Adult with a Developmental Disability.
Humans; Male; Young Adult; Middle Aged; Adult; Qualitative Research; *Fathers/px [Psychology]; *Adult Children; *Developmental Disabilities; *Parenting/px [Psychology]
BACKGROUND: An in-depth exploration of the experience of midlife fathers of developmentally disabled young adults (aged 19-32 years) was motivated by a dearth of research in this area (McKnight, PsyPAG Quarterly, 94, 2015, 10)., METHOD: Five fathers participated in semi-structured interviews which were subjected to interpretative phenomenological analysis (Smith, Flowers and Larkin, 2009, Interpretative Phenomenological Analysis: Theory, Method, and Research. London: Sage)., RESULTS: The final thematic structure comprises four inter-related themes. They demonstrate a high degree of concern for children's well-being; the joy adult children confers on their father's lives as well as the difficulties men experience in response to the limited opportunities available to their offspring. Importantly findings also illustrate the way in which men struggle to contend with painful emotions., CONCLUSIONS: Societal conceptions of masculinity, fatherhood and disability necessarily influence the way fathers experience the world (Yarwood, Fathering, 9, 2011, 150). It is imperative that service providers recognize the particular challenges faced by fathers, seeking ways to better engage and support them. Copyright © 2016 John Wiley & Sons Ltd.
Thackeray, Lisa A; Eatough, Virginia
Journal of Applied Research in Intellectual Disabilities
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/10.1111/jar.12313" target="_blank" rel="noreferrer noopener">10.1111/jar.12313</a>
Openness and avoidance--a longitudinal study of fathers of children with intellectual disability.
Humans; Child, Preschool; Female; Male; Infant; Longitudinal Studies; Adult; Qualitative Research; *Fathers/px [Psychology]; *Father-Child Relations; *Intellectual Disability/px [Psychology]; *Parenting/px [Psychology]; *Developmental Disabilities/px [Psychology]
BACKGROUND: Fathers' interactions with children who have intellectual disabilities (ID) or developmental delays (DD) have increased over the past few decades and may be expected to continue to increase as maternal and paternal roles, along with other gender roles, become more equal. The aim of the present study was to explore fathers' experiences of parenthood in relation to a child with ID/DD from the initial discovery of the disability to 5 years later., METHODS: Fathers' experiences of parenting children with ID/DD were explored in a longitudinal framework. Seven Swedish fathers of young children with ID/DD participated in a series of semi-structured interviews from 2005 to 2010, and their accounts were subjected to interpretative phenomenological analysis., RESULTS: The analysis revealed three themes: (1) An interrupted path - no longer taking things for granted, which describes the fathers' reactions to their children's diagnosis; (2) Being a good father, which describes the fathers' overall perceptions of their parenting of a child with ID/DD; and (3) Dealing with the unexpected, which describes fathers' individual ways of integrating, managing, and living with the knowledge of their child's disability over the 5 years during which fathers were interviewed., CONCLUSIONS: Fathers' individual paths need to be taken into consideration when offering psychological support to families of children with ID/DD. Copyright © 2013 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.
Bostrom, P K; Broberg, M
Journal of Intellectual Disability Research
2014
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<a href="http://doi.org/10.1111/jir.12093" target="_blank" rel="noreferrer noopener">10.1111/jir.12093</a>
Challenges and coping styles of fathers as primary medical caretakers: a multicultural qualitative study.
Humans; Male; United States; Neoplasms; Middle Aged; Adult; Qualitative Research; Socioeconomic Factors; Social Support; Anemia, Sickle Cell; *Adaptation, Psychological; *Caregivers/px [Psychology]; *Fathers/px [Psychology]; *Father-Child Relations/eh [Ethnology]; Ethnicity/px [Psychology]; Family Conflict
Research has focused heavily on mother's experiences of children with life-threatening illnesses. In contrast, fathers' experiences, especially among minorities, are scarcely discussed. This study examined the experiences of 15 fathers as primary medical caretakers of children diagnosed with cancer or sickle cell disease. Using a life story method, fathers completed semistructured interviews regarding their overall experiences. Data was analyzed using narrative analysis with multiple case studies. Results indicated single, low socioeconomic status, and immigrant fathers with limited English proficiencies were at highest risk for coping difficulties. This study also examined gender biases that men experienced and masculine norms in coping.
Wolff, Joshua; Pak, Jenny; Meeske, Kathleen; Worden, J William; Katz, Ernest
Journal of Psychosocial Oncology
2010
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<a href="http://doi.org/10.1080/07347330903516902" target="_blank" rel="noreferrer noopener">10.1080/07347330903516902</a>
Differences and similarities between mothers' and fathers' experiences of parenting a child with a disability.
Humans; Child; Child, Preschool; Female; Male; Middle Aged; Parent-Child Relations; Communication; Adult; Qualitative Research; Gender Identity; Adaptation, Psychological; Focus Groups; Nursing Methodology Research; *Attitude to Health; *Disabled Children/px [Psychology]; Early Intervention, Educational; *Fathers/px [Psychology]; Stereotyping; Marriage/px [Psychology]; *Mothers/px [Psychology]; *Parenting/px [Psychology]; *Down Syndrome/px [Psychology]; Disabled Children/rh [Rehabilitation]; Down Syndrome/rh [Rehabilitation]
This qualitative study used focus groups to identify the differences and similarities in the experiences of parents of children with a disability. Two main themes emerged, showing the ways in which the mothers and fathers are alike or different. One concerns roles, actual and expected, in the various subsystems of family life. The other concerns the normalization and stigmatization that arise because of the child's problem. Mothers tend to score better in terms of interpersonal and group communications. It would seem that the fathers' expectations are harder to fulfil than the mothers'. The fathers' expectations are attuned to the outer world; the actual day-to-day tasks related to the child's care are not their priority. The mothers are less demanding and their expectations are more self-focused. Interestingly, these families are similar to families of children without a disability; however, the difficulties they experience are accentuated by the presence of a child with a problem.
Pelchat, Diane; Lefebvre, Helene; Perreault, Michel
Journal of Child Health Care
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/10.1177/13674935030074001" target="_blank" rel="noreferrer noopener">10.1177/13674935030074001</a>
Being a dad to a child with Down's syndrome: Overcoming the challenges to adjustment.
Humans; Child; Child, Preschool; Male; Infant; Middle Aged; Adult; Qualitative Research; Grounded Theory; *Fathers/px [Psychology]; *Down Syndrome/nu [Nursing]
BACKGROUND: Historically, research exploring the impact of having a child with an Intellectual Disability (ID), has focussed exclusively on mothers. The present study aimed to investigate fathers' experiences of parenting a child with Down's syndrome (DS), their contributions, influences on family functioning and inclusion in their child's support provision., METHOD: Semi-structured interviews were conducted with 15 fathers. Interviews were analysed using Grounded Theory (GT)., RESULTS: Fathers' adjustment appeared to be on a fluid trajectory with three key categories influencing this: "Accommodating the Child," "Adapting the Parental/Spousal Role" and "Adapting Society.", CONCLUSIONS: The accounts uncovered fathers' adjustment trajectory to parenting a child with DS, concluding that despite practical and emotional challenges, fathers employed strategies to achieve positive adjustment. Fathers identified the need for services to recognize their role and involve them in their child's support provision. Implications for clinical practice and future research are discussed. Copyright © 2019 The Authors. Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.
Ridding, Anna; Williams, James
Journal of Applied Research in Intellectual Disabilities
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/jar.12563" target="_blank" rel="noreferrer noopener">10.1111/jar.12563</a>
Differences and similarities between mothers and fathers of premature children: a qualitative study of parents' coping experiences in a neonatal intensive care unit.
Humans; Infant, Newborn; Female; Male; Middle Aged; Adult; Qualitative Research; *Parent-Child Relations; Social Support; Object Attachment; *Professional-Family Relations; *Adaptation, Psychological; *Intensive Care Units, Neonatal; *Fathers/px [Psychology]; *Mothers/px [Psychology]; Intensive Care, Neonatal/mt [Methods]; *Intensive Care, Neonatal/px [Psychology]; Intensive Care Units, Neonatal/og [Organization & Administration]; Intensive Care, Neonatal/og [Organization & Administration]
BACKGROUND: The aim of this study was to explore and describe the coping experiences of parents to children admitted to a neonatal unit., METHODS: A qualitative research approach was chosen, using in-depth interviews with eight fathers and eight mothers., RESULTS: The main findings were that parents with previous complicated births had more difficulties in coping compared to those parents with no experience with complications. Coping seemed easier where parents' opinions were heard regarding their baby's care and when both parents were present in the neonatal intensive care unit (NICU). The main similarities between mothers and fathers were the reluctance to speak their opinions on childcare, and both experienced a sense of alienation and problems in bonding with the baby. They also needed a limitation on the number of visitors in the NICU. Differences between mothers and fathers were that fathers tried hard to be the strong partner in the relationship, and were more concerned with the mother if she was seriously ill postpartum, while mothers were more concerned for their baby. Mothers' postpartum period was felt as more stressful if the father was not present, but mothers were also better at welcoming support from the health personnel., CONCLUSION: This study highlights the parent's coping experiences in NICUs. Coping seemed easier where parents' opinions were heard. Nurses in the NICU should take the former experiences of the parents into consideration when nursing in the NICU and planning for discharge.
Hagen, I H; Iversen, V C; Svindseth, M F
BMC Pediatrics
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12887-016-0631-9" target="_blank" rel="noreferrer noopener">10.1186/s12887-016-0631-9</a>
Engaging Fathers in Pediatric Palliative Care Research
Humans; Child; child; Male; pediatrics; Professional-Family Relations; controlled study; male; Adult; child health; perception; palliative therapy; Adaptation, Psychological; Caregiver; *Palliative Care/px [Psychology]; interview; health care personnel; wellbeing; qualitative research; father; *Fathers/px [Psychology]; *Father-Child Relations; Paternal caregivers; research engagement; sample recruitment challenges; *Paternal Behavior/px [Psychology]
Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A secondary mixed-methods evaluation design guided examination of interview and focus group data as well as field notes from a qualitative study that examined the experiences and support needs of fathers of children with a life-limiting illness. Facilitators of paternal participation in the study consisted of: fathers' desire to gain from study participation either for themselves or others, perception of the study's importance, sense of appreciation for the study's focus on fathers and an established relationship with recruiting health care providers. Barriers to study participation included: recruiting health care providers' appraisal of fathers' lack of well-being, bereaved fathers' self-reported poor coping and the inability to locate and contact fathers, particularly after a child's death. Strategies for improving the engagement of fathers into research entailed: educating recruitment personnel, designing "father-focused" studies, communicating the value of the research to recruitment personnel and potential participants, and ensuring that child health records are accurate and include fathers' contact information.
Nicholas, D.; Beaune, L.; Belletrutti, M.; Blumberg, J.; Ing, S.; Rapoport, A.; Barrera, M.
Journal Of Social Work In End-Of-Life and Palliative Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/15524256.2019.1703877" target="_blank" rel="noreferrer noopener">10.1080/15524256.2019.1703877</a>
Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: a qualitative study
child; adult; article; female; human; male; palliative therapy; Information Dissemination; caregiver; health care personnel; human experiment; health care policy; cross-sectional study; adolescent; Jordan; qualitative research; attitude to health; semi structured interview; pediatric patient; Jordanian; implicit bias; advanced cancer/dm [Disease Management]; doctor patient relationship; medical information; refugee; health care practice; myelodysplastic syndrome; myeloproliferative disorder; reticuloendothelial tumor
Introduction: Effective communication in pediatric palliative cancer care is an important aspect of practice to enhance patient- and family-centered care, and to optimize decision-making. However, little is known about communication preferences practices from the perspectives of children, caregivers and their health care professionals (HCPs) in the Middle Eastern region. Furthermore, involving children in research is crucial but limited. This study aimed to describe the communication and information-sharing preferences and practices of children with advanced cancer, their caregivers, and health care professionals in Jordan. Method(s): A qualitative cross-sectional study was conducted using semi-structured face to face interviews with three groups of stakeholders (children, caregivers and HCPs). Purposive sampling recruited a diverse sample from inpatient and outpatient settings at a tertiary cancer center in Jordan. Procedures were in line with the Consolidated criteria for reporting qualitative research (COREQ) reporting guidelines. Verbatim transcripts were thematically analyzed. Finding(s): Fifty-two stakeholders participated: 43 Jordanian and 9 refugees (25 children, 15 caregivers and 12 HCPs). Four major themes emerged: 1) Hiding information between the three stakeholders which includes parents who hide the information from their sick children and ask the HCPs to do so to protect the child from distressful emotions and children who hide their suffering from their parents to protect them from being sad; 2) Communication and sharing of clinical versus non-clinical information; 3) Preferred communication styles such as use of a companionate approach by acknowledging patients and caregivers' suffering, building a trustful relationship, proactive information sharing, considering child age and medical status, parents as facilitators in communication, and patients' and caregivers' health literacy; 4) Communication and information sharing with refugees where they had dialect issues, which hindered effective communication. Some refugees had unrealistically high expectations regarding their child's care and prognosis, which posed challenges to communication with staff. Discussion(s): The novel findings of this study should inform better child-centered practices and better engage them in their care decisions. This study has demonstrated children's ability to engage in primary research and to express preferences, and parents' ability to share views on this sensitive topic.Copyright © 2023 Alarjeh, Boufkhed, Alrjoub, Guo, Yurdusen, Ahmed, Abdal-Rahman, Alajarmeh, Alnassan, Al-Awady, Kutluk, Harding and Shamieh.
Alarjeh G; Boufkhed S; Alrjoub W; Guo P; Yurdusen S; Ahmed F; Abdal-Rahman M; Alajarmeh S; Alnassan A; Al-Awady S; Kutluk T; Harding R; Shamieh O
Frontiers in 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/10.3389/fonc.2023.1118992" target="_blank" rel="noreferrer noopener">10.3389/fonc.2023.1118992</a>
Supportive care for cancer-related symptoms in pediatric oncology: a qualitative study among healthcare providers
Canada; United States; Germany; childhood cancer; adult; article; cancer chemotherapy; female; human; male; quality of life; palliative therapy; aged; education; Netherlands; anxiety; philosophy; Norway; clinical article; interview; content analysis; health care personnel; qualitative research; cancer therapy; insomnia; fatigue; acute lymphoblastic leukemia; leukemia; constipation; nausea; semi structured interview; vomiting; alternative medicine; nurse; music therapy; dietitian; acupuncture; aromatherapy; integrative medicine; massage; professional practice; acupressure; play therapy; psychodrama; vincristine
Background: The aim of this study is to gain insight into the clinical experiences and perceptions that pediatric oncology experts, conventional healthcare providers, and complementary and alternative medicine (CAM) providers in Norway, Canada, Germany, the Netherlands, and the United States have with the use of supportive care, including CAM among children and adolescents with cancer. Method(s): A qualitative study was conducted using semi-structured in-depth interviews (n = 22) with healthcare providers with clinical experience working with CAM and/or other supportive care among children and adolescents with cancer from five different countries. Participants were recruited through professional associations and personal networks. Systematic content analysis was used to delineate the main themes. The analysis resulted in three themes and six subthemes. Result(s): Most participants had over 10 years of professional practice. They mostly treated children and adolescents with leukemia who suffered from adverse effects of cancer treatment, such as nausea and poor appetite. Their priorities were to identify the parents' treatment goals and help the children with their daily complaints. Some modalities frequently used were acupuncture, massage, music, and play therapy. Parents received information about supplements and diets in line with their treatment philosophies. They received education from the providers to mitigate symptoms and improve the well-being of the child. Conclusion(s): Clinical experiences of pediatric oncology experts, conventional health care providers, and CAM providers give an understanding of how supportive care modalities, including CAM, are perceived in the field and how they can be implemented as adaptational tools to manage adverse effects and to improve the quality of life of children diagnosed with cancer and the families.Copyright © 2023, The Author(s).
Mora DC; Jong MC; Quandt SA; Arcury TA; Kristoffersen AE; Stub T
BMC Complementary Medicine and Therapies
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/s12906-023-03924-x" target="_blank" rel="noreferrer noopener">10.1186/s12906-023-03924-x</a>
The need of patients living with cancer for palliative care
Health Services Needs and Demand; Palliative Care; Neoplasms; Anxiety; Questionnaires; Adult; Psychometrics; Adolescence; Middle Age; Health Services Accessibility; Aged; Depression; Stress Psychological; Data Analysis Software; Descriptive Research; Human; Descriptive Statistics; Nursing; Self Report; Palliative Care Nursing; Chi Square Test; Jordan; Psychological Distress; Cross Sectional Studies; Patient Attitudes; Convenience Sample; Aged 80 and Over; Cancer Patients; Spiritual Care
Background: A comprehensive assessment of patients' problems and needs is
Alnajar MK; Abdalrahim MS; Mosleh SM; Farhan M; Amro K; Darawad MW
International Journal of Palliative 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/10.12968/ijpn.2023.29.5.236" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2023.29.5.236</a>
Gender Differences in Depressive Symptoms Following Child Death in Later
Child; Female; Male; Prognosis; United States; Risk Factors; Bereavement; Parent-Child Relations; Adult; Age Factors; Mortality; Sex Factors; Middle Age; Adaptation Psychological; Fathers; Aged; Depression; Mother-Child Relations; Mothers; Human; Father-Child Relations; Evaluation; Only Child; Funding Source; Trends; Vulnerability; Psychosocial Factors; Comparative Studies; Recovery; In Adulthood; In Middle Age; In Old Age
Objectives: This study examined short- and long-term psychological adjustment to parental bereavement in later life for mothers and fathers. Methods: Using 9 waves of data from the United States (1998-2014 Health and Retirement Study), I estimated trajectories of mothers' and fathers' depressive symptoms surrounding child death in later life, highlighting gender differences in adjustment. Moderation analyses were performed to uncover heterogeneous trajectories across parental characteristics. Results: Mothers were more likely to experience child death and reported higher depressive symptoms prior to parental bereavement than fathers. Mothers and fathers who lost a child reported an increase in depressive symptoms that diminished over time. The short-term elevation in depressive symptoms was marginally greater for mothers than fathers, but depressive symptoms declined at a faster rate for mothers than fathers in the years following the death. These counterbalancing changes resulted in mothers and fathers returning to their respective prebereavement levels of depressive symptoms between 2 and 4 years postbereavement. Parental age moderated trajectories distinctly by gender, and the presence of surviving children buffered the impact of child death on depressive symptoms for mothers but not fathers. Discussion: Mothers more often experience child death in later life and their adjustment process differs from that of fathers, underscoring the salience of gender in shaping how older parents respond to the death of a child. Older parents and mothers without surviving children are vulnerable to prolonged elevations in depressive symptoms following the death of a child in later life.
Mellencamp KA
Journals of Gerontology: Series B
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/geronb/gbac189" target="_blank" rel="noreferrer noopener">10.1093/geronb/gbac189</a>
Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care
Health Services Needs and Demand; Female; Male; Palliative Care; Quality of Health Care; Adult; Telemedicine; Middle Age; Qualitative Studies; Home Health Care; Data Analysis Software; Human; Descriptive Statistics; Pediatric Care; Family Attitudes; Funding Source; Semi-Structured Interview; Patient Attitudes; Quantitative Studies; Pilot Studies; Telehealth
Abstract Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families 24/7 during crises. The complementary use of telehealth may improve the quality of care. In this pilot study we identify the needs and concerns of patients, teams, and other stakeholders regarding the introduction of telehealth. As a first step, focus groups were conducted in three teams. For the second step, semi-structured interviews were conducted with patients and their families (n = 15). Both steps were accompanied by quantitative surveys (mixed methods approach). The qualitative data were analyzed using content analysis. A total of 11 needs were identified, which were prioritized differently. Highest priority was given to: data transmission, video consultation, access to patient records, symptom questionnaires, and communication support. The concerns identified were related to the assumption of deterioration of the status quo. Potential causes of deterioration were thought to be the negative impact on patient care, inappropriate user behavior, or a high level of technical requirements. As a conclusion, we define six recommendations for telehealth in PPHC.
Zimmermann J; Heilmann ML; Fisch-Jessen M; Hauch H; Kruempelmann S; Moeller H; Nagel L; Nathrath M; Vaillant V; Voelker T; Deckers MJ
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/children10081315" target="_blank" rel="noreferrer noopener">10.3390/children10081315</a>
Facilitators and barriers perceptions to early referral to pediatric palliative care perceived
child; Palliative Care; adult; article; controlled study; female; human; major clinical study; male; palliative therapy; Referral and Consultation; patient referral; pediatrician; clinical practice; multicenter study; religion; perception; demography; professional practice
Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the care of children with cancer. Methods: A 36-question survey based on preliminary, single-institution data was electronically distributed to pediatric oncology physicians, nurse practitioners, nurses, and social workers nationally. The principal outcomes measured included perceived barriers and facilitators to early integration of pediatric palliative care. Data were analyzed using Rv3.1.2 statistical software. Results: Most respondents agreed that the PCT does not negatively impact the role of the oncologist; however, there were concerns that optimal patient care may be limited by pediatric oncologists' need to control all aspects of patient care (P < 0.001). Furthermore, oncologists, more than any provider group, identified that the emotional relationship they form with the patients and families they care for, influences what treatment options are offered and how these options are conveyed (P < 0.01). Education and evidence-based research remain important to all providers. Respondents reached consensus that early integration of a PCT would provide more potential benefits than risks and most would not limit access to palliative care based on prognosis. Conclusions: Overall, providers endorse early integration of the PCT for children with cancer. There remains a continued emphasis on provider and patient education. Palliative care is generally accepted as providing a benefit to children with cancer, though barriers persist and vary among provider groups.
Ceballos-Yanez D; Patricio AP; Eugenin-Soto MI
Andes Pediatrica
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/10.32641/andespediatr.v94i3.4382" target="_blank" rel="noreferrer noopener">10.32641/andespediatr.v94i3.4382</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>
Bereaved mothers' experience of expressing and donating breast milk: An interpretative phenomenological study
Female; Attitude to Death; Bereavement; Grief; Adult; Altruism; Mothers; Phenomenological Research; Human; Life Experiences; Evaluation; Northern Ireland; Thematic Analysis; Coping; Perinatal Death; Funding Source; Milk Banks; Milk, Human; Maternal Attitudes; Semi-Structured Interview; Psychosocial Factors; Maternal Role; Milk Ejection; Autonomy; Milk Expression
Abstract Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick babies resident in Neonatal Intensive Care Units. This study aimed to explore the lived experience of mothers who have expressed and donated their breast milk following the loss of their infant. Seven bereaved mothers who donated milk to the Human Milk Bank in Northern Ireland were recruited. These women took part in semistructured interviews, which explored their experiences of perinatal loss and the role that expression/donation played for them in their grief. Their accounts were analysed using a qualitative interpretative phenomenological analysis (IPA) method. After transcription and analysis, three superordinate themes emerged; (1) fulfilling the mother role; (2) the power of being able to 'Do'; (3) making good from the bad. The stories of these women reflect the independent and individual nature of grief. Each mother gained a great deal of comfort in having the ability to express milk. For some this created a physical connection to their child, for others, it created time alone to process what had happened and for all, it created a sense of autonomy and ownership in what was otherwise a very turbulent time in their lives.
Ward G; Adair P; Doherty N; McCormack D
Maternal & Child Nutrition
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/mcn.13473" target="_blank" rel="noreferrer noopener">10.1111/mcn.13473</a>