Context: Coronavirus disease 2019 (COVID-19) has impacted most elements of daily life, including the provision of support after a child's death and the experience of parental bereavement.Objectives: This study aims to examine ways in which COVID-19 has affected the bereavement experiences of parents whose children died of cancer before the pandemic.Methods: Parents who participated in a survey-based study examining the early grief experience were invited to complete a semistructured interview. During the interview, which focused on examining the current support for parents and other family members within the first several years after the child's death, participants were asked how COVID-19 has impacted their life and bereavement.Results: Fifteen of 33 eligible parents completed the interview; 14 were white and non-Hispanic, five were males. Parents participated an average of 19 (range 12-34) months after their child's death. COVID-19 was addressed in 13 interviews. Eleven codes were used to describe interview segments; the most commonly used codes were change in support, no effect, familiarity with uncertainty/ability to cope, and change in contact with care/research team.Conclusion: Parents identified multiple and variable ways-both positive, negative, and neutral-how COVID-19 has affected their bereavement. Many parents commented on feeling more isolated because of the inability to connect with family or attend in-person support groups, whereas others acknowledged their experience has made them uniquely positioned to cope with the uncertainty of the current situation. Clinicians must find innovative ways to connect with and support bereaved parents during this unique time.
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bereaved parents; Birth; dying; life-limiting disease; neonates; Palliative Care
Description
Against the background of a society that tends to underrate the grief experienced by parents whose infants have died prematurely, the model "SORROWFUL" is presented here with the intent to highlight the significance of the death of a newborn for the affected family. It is a supportive tool in counseling for parents grieving the (impending) loss of an infant(s) during peri- or neonatal life and may be implemented within the parental psychosocial support setting beginning with the initial diagnosis until well after the death of the child. The model intentionally allows flexibility for cultural and individual adaptation, for the accommodation to the varying needs of the affected parents, as well as to available local resources.
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Bereaved Parents; Family-Centred Care; Paediatric; Palliative Care; Patient-Centred Care
Description
OBJECTIVES: Premature death of a child from a serious illness is probably one of the most painful experiences for a parent. This study examined the clinical experiences of bereaved parents of children with a life-limiting illness to provide recommendations for quality care. MATERIALS AND METHODS: Data were collected using semi-structured in-depth interviews with bereaved parents whose children had died at least 3 months before the interview. Parents were purposively sampled from two institutions offering end-of-life care to children with life-limiting illnesses. Data were analysed using thematic analysis. RESULTS: Data analysis revealed three main themes: (1) Clinical communication, (2) Healthcare infrastructure and (3) Non-physical aspects of healthcare. The seven subthemes uncovered were as follows: (1) Honesty and clarity, (2) empathy, (3) interdisciplinary communication, (4) inconveniences in hospital, (5) home palliative care, (6) financial burden of illness and (7) psychosocial and spiritual support. CONCLUSION: Strategies to improve healthcare for children and their families are multifold. Underlying the provision of quality care is compassion; a child and family-friendly healthcare system with compassionate providers and compassionate institutional policies are vital components to achieving quality healthcare. Culturally sensitive psychosocial, emotional and spiritual support will need to be integrated as standard care.
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OBJECTIVES: Losing a child prior to midlife may be a uniquely traumatic event that continues to compromise parents' well-being in later life. This study compared psychological well-being between bereaved and non-bereaved parents, and examined whether volunteering protects bereaved parents. Because most families have more than one child, we further explored whether the number of living children parents had differentiated bereaved parents in their well-being. METHODS: We analyzed a pooled sample of parents aged 50+ (N = 12,023) from the Health and Retirement Study (2010/2012-2012/2014), including parents who lost a child prior to 50 and those who never lost a child. Two-level linear regression models were estimated to test the associations between child loss, volunteering, and psychological well-being, and examine the moderating effect of number of living children. RESULTS: Bereaved parents reported more depressive symptoms and lower life satisfaction than their non-bereaved counterparts, which was more evident among parents with fewer children alive. Among bereaved parents, volunteering, particularly volunteering 100+ hours/year, was associated with better psychological well-being at baseline; yet, volunteering 1-99 hours/year led to a larger increase in life satisfaction over time. The benefits of volunteering held true regardless of the number of living children. CONCLUSION: This study adds to our understanding of the lasting effect of parental bereavement and suggests volunteering as a potential intervention aimed at helping bereaved older parents. Findings identify parents with fewer children as a particularly vulnerable population in the face of child loss and calls for more resources allocated to help them.
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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).
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).
BACKGROUND: Bereavement after the death of a child is devastating and associated with worse physical and psychosocial well-being in parents. Evidence suggests that parents desire and benefit from support provided by other bereaved parents. To foster this peer support, an institutional peer-to-peer mentorship program for bereaved parents was established, through which trained bereaved parent mentors offer support for newly bereaved parents. METHODS: Using a retrospective cohort design, we describe the characteristics of participants of the Bereaved Parent Mentorship program. Trained bereaved parent mentors documented encounters with newly bereaved parent mentees using a secure internet-based form. Mentors summarized each encounter including any concerns or need for professional psychosocial support. Descriptive statistics were used to describe mentor and mentee characteristics; free text from encounter summaries was qualitatively analyzed using content analysis. RESULTS: A total of 1368 documented encounters occurred between 150 mentees and 39 mentors from January 1, 2014 to February 29, 2020. Only seven encounters (0.5%) were flagged as serious concern necessitating professional psychosocial support. Four key themes in the encounters between mentors and mentees emerged, including: descriptions of the grief experience, ways in which a mentor supported their mentee, challenges the mentor experienced in supporting the mentee, and personal benefit gained by the mentor from supporting their mentee. CONCLUSION: This structured Bereaved Parent Mentorship program fostered rich interactions between bereaved parent participants, with very few encounters requiring professional assistance. Future research will assess the impact of bereaved mentor programs on resilience and psychosocial, physical, and functional well-being of parents.
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As pediatric palliative care (PPC) became a recognized medical specialty, our developing clinical PPC team longitudinally partnered with bereaved parents to understand the care that their children received as they transitioned towards end of life. Families developed Eight Priorities, shared within, to improve care for children with a poor chance of survival based on their experience of losing a child to cancer. In this paper, we delineate the top eight PPC needs from a parent perspective to offer multi-layered, individually tailored resources for patients and families. One of these Eight Priorities noted that bereavement care for the remaining family members is vital for healing after the death of a child to promote meaning making and resilience in bereaved families. Here, we outline the creation of a bereaved parent-designed bereavement support program as one example of how we have partnered with parents to fulfill their Eight Priorities for quality care.
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Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with health-care providers. This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with health-care providers during a child's terminal illness, from diagnosis to death. The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants' perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence, and thus compounded the experience of loss. Specifics and implications for practice are explored.
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Current models of bereavement care do not address all of bereaved parents' unique needs. Diverse challenges limit parents' ability to access certain bereavement services. A web-based intervention prototype for bereaved parents was developed. Using convenience and snowball techniques, 14 participants (pediatric providers, software developers, and bereaved parents) were enrolled in a descriptive, cross-sectional feasibility and usability study. While the intervention was generally considered acceptable, three themes were identified to enhance its usability and acceptability: timing; delivery; and revisions. Further intervention development is needed to improve both short- and long-term physical and psychological outcomes for bereaved parents.
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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).
Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with health-care providers. This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with health-care providers during a child's terminal illness, from diagnosis to death. The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants' perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence, and thus compounded the experience of loss. Specifics and implications for practice are explored.
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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).
bereaved parents; complicated grief; death of a child; family-oriented rehabilitation; prolonged grief disorder
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anger toward God; bereaved parents; forgiveness; loss of a child; meaning; No terms assigned; Self-forgiveness
Description
The aim of this study was to focus on the relationship of forgiveness toward others, self-forgiveness, and anger toward God after the loss of a child. A sample of 84 grieving parents completed a battery of questionnaires. Self-forgiveness was found to be the strongest predictor of avoiding negative psychological adjustment after the loss (defined by the variables of normative and complicated grief, depression, anxiety, and anger) and the strongest predictor of positive psychological adjustment after the loss (defined by the variables of life meaningfulness, sense-making, benefit finding, and meaning reconstruction). (PsycINFO Database Record (c) 2019 APA, all rights reserved)
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advanced practice nurse; bereaved parents; paediatric; palliative care; parent experiences
Description
Objectives * Identify innovative ways to incorporate highly trained bereaved parent volunteers into educational opportunities in palliative care for health care providers and staff. * Describe the process of implementation and content of palliative care educational forums facilitated by bereaved parent educators. * Conduct training, support, and debriefing that is provided to bereaved parent volunteer educators and facilitators involved in staff education on palliative and end-of-life care. High quality medical education for all members of the clinical and supportive care team requires training in principles of palliative and end-of-life care, including symptom management, empathic communication, ethical considerations, and provision of support around the time of death and throughout bereavement. We have demonstrated that experiences of bereaved parents can augment and inform palliative care educational curricula in uniquely powerful and valuable ways. We present a novel and innovative palliative care training program facilitated by bereaved parents of children cared for at our institution, who now serve as volunteer educators in palliative care didactic forums for clinical staff. Current and ongoing educational events include quarterly offerings of the End of Life Nursing Education Consortium (ELNEC), and Quality of Life Seminars, two independent one-day training programs for nurses, support staff, advanced practice nurses, and physicians. These educational sessions utilize small groups, facilitated by a bereaved parent volunteer and a palliative care team member, to augment didactic teaching, encourage interactive discussion and questions, and allow practice in palliative care skills. Bereaved parents also function as facilitators and educators in intensive and interactive communication workshops for medical trainees and collaborate with palliative care physicians to teach communication skills in national forums in which they provide communication training and discuss fundamentals of bereavement support. Unquestionably, appropriate selection and training of bereaved parent educators is essential to programmatic success. Parents receive support through scheduled debriefings following each event, with additional one-on-one support provided as needed. Feedback from bereaved parent participants demonstrate unanimous perception of teaching opportunities as meaningful avenues to continue longitudinal relationships with the institution and create lasting legacies to honor their children. Our uniquely innovative integration of bereaved parents in education around palliative and end-of-life care is a model which we have observed to be an effective and beneficial intervention for both staff and parents.
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).
Citation List Month
May 2018 List
URL Address
a href="http://doi.org/10.1016/j.jpainsymman.2017.12.128" target="_blank">http://doi.org/10.1016/j.jpainsymman.2017.12.128
Understanding parental experiences following infant death in the neonatal intensive care unit (NICU) is a high research priority and a necessary first step to improving health services. However, recruiting bereaved parents to discuss their experiences on such an extremely sensitive topic can be challenging and research procedures must be planned carefully in order to get an adequate sample. There is little published in the literature detailing specific strategies for recruiting bereaved parents for grief research, especially strategies for contacting parents and identifying factors that might affect participation. The purpose of this paper is to describe the process of recruiting bereaved parents into a qualitative research study exploring parental NICU experiences and grief responses following infant death. We describe a successful recruitment plan that led to the enrollment of difficult to recruit participants such as fathers, and individuals representing minorities and those from lower socioeconomic (SES) groups. Bereaved parents of infants after an NICU hospitalization should continue to be recruited for research studies for their unique perspectives and valuable insights about the devastating experience of infant death. Participants in this study reported more benefits than harm and the results addressed a critical gap in the literature.
2016-11
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bereaved parents; bereavement; bereavement programs; Child; child's death; health outcomes; health promotion; Health Status; Only Child; palliative and end-of-life; parental bereavement; pediatric bereavement care
Description
PURPOSE: To examine bereaved parents' physical, mental, and social health during the first 6 months after their child's (<12 years) death from a life-threatening illness. BACKGROUND AND SIGNIFICANCE: Bereaved parents have higher mortality and morbidity rates when compared to nonbereaved parents. Acute illnesses, hospitalizations, and medication changes are highest in the first 6 months. An understanding of bereaved parents' health risk indicators can help inform development of health promotion and disease prevention measures. Methods and Analysis: A prospective descriptive study examined 8 parent dyads. Parents completed health surveys (Patient-Reported Outcomes Measurement Information System-global, social, and sleep; Brief Symptom Inventory [BSI] 18), which are used to assess parents' health at 3 and 6 months after their child's death. Demographic data included a medical history, hospital or emergency department visits, and smoking and alcohol intake. Descriptive statistics were used to compare parents' scores to US general population scores. FINDINGS: Mothers' and fathers' physical, mental, and sleep health scores were typically within 1 to 2 standard deviations of the population norms. However, their social health scores were as low as 3 standard deviations and all parents' scores were below population norms. Four (25%) of the 16 parents had new diagnosis during the first 6 months. Based on the BSI-18, 3 parents had their scores above population cutoffs, which warranted a need for further clinical evaluation. CONCLUSIONS: Health data highlight the "at-risk" health status of bereaved parents. Further validation of these data is required to support the development of health promotion and disease prevention programs.
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BACKGROUND AND PURPOSE: In the United States, 57,000 children (newborn to 18 years) die annually. Bereaved parents may rely on religious or spiritual beliefs in their grief. The study's purpose was to examine differences in parents' use of spiritual and religious coping practices by gender, race/ethnicity, and religion at 1 and 3 months after infant/ICU death. METHODS: The sample consisted of 165 bereaved parents, 78% minority. The Spiritual Coping Strategies Scale was used to measure religious and spiritual coping practices, separately. One-way ANOVAs indicated that Black non-Hispanic mothers used significantly more religious coping practices at 3 months than White non-Hispanic mothers. Protestant and Catholic parents used more religious coping practices than the "no" and "other" religion groups at 1 and 3 months. Within the 30 mother-father dyads (paired t-tests), mothers reported significantly greater use of religious coping practices at 1 and 3 months and spiritual coping practices at 3 months than fathers. CONCLUSION: Religious coping practices were most commonly used by Black mothers and Protestant and Catholic parents. Within dyads, mothers used more spiritual and religious coping practices than fathers. IMPLICATIONS FOR PRACTICE: These findings are beneficial for healthcare personnel in providing support to bereaved parents of diverse races/ethnicities and religions.
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Citation List Month
October 2017 List
Notes
2327-6924 Hawthorne, Dawn M ORCID: http://orcid.org/0000-0002-4359-3809 Youngblut, JoAnne M Brooten, Dorothy Journal Article United States J Am Assoc Nurse Pract. 2017 Aug 23. doi: 10.1002/2327-6924.12498.