The most painful estrangement: Death at birth
article; human; social support; palliative therapy; coping; mourning; stillbirth; guilt; depression; emotion; identity; suicide; posttraumatic stress disorder; personal experience; bereavement; avoidance behavior; emotional stress; child death; prevalence; decision making; family history; regret; emotional support; lactation; sadness; fear; continuing education; sorrow; community care; stigma; spontaneous abortion; self concept; shame; loneliness; alienation; complicated grief/dt [Drug Therapy]; family stress; naltrexone/dt [Drug Therapy]; rage; social bonding; traffic accident
More than two million babies a year die during or before birth around the world, evoking grief that is traumatic. Because the psychological, physical, social, and emotional ramifications of grief following a baby's death are so enduring and intense, social support is essential to helping families cope. In particular, emotional acts of caring and judicious use of language are crucial, avoiding the use of the terms that belittle the value of the baby's life and the importance of the baby as part of a family history. Traumatic grief informed continuing education can aid providers in increasing sensitivity to the needs of grieving families and minimize additional trauma and suffering in the aftermath of such loss.
Cacciatore J
Seminars in Perinatology
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.semperi.2023.151870" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2023.151870</a>
Regret and unfinished business in parents bereaved by cancer: A mixed methods study
caregivers; decision-making; grief; neoplasm; pediatric; Regret
BACKGROUND: Prior research has demonstrated that the presence of regret and unfinished business is associated with poorer adjustment in bereavement. Though there is a growing literature on these constructs among caregivers of adult patients, the literature on regret and unfinished business in bereaved parents has been limited. AIM: The aim of this study was to examine regret and unfinished business in parents bereaved by cancer, as well as their associations with caregiving experiences and prolonged grief. DESIGN: This was a cross-sectional mixed methods study that utilized self-report questionnaires with open-ended items. SETTING/PARTICIPANTS: The multisite study took place at a tertiary cancer hospital and pediatric cancer clinical research institution. Participants were 118 parents (mothers = 82, fathers = 36) who lost a child aged 6 months to 25 years to cancer between 6 months and 6 years prior. RESULTS: Results showed that 73% of the parents endorsed regret and 33% endorsed unfinished business, both of which were more common among mothers than fathers (p 0.05). Parents were on average moderately distressed by their regrets and unfinished business, and both regret-related and unfinished business-related distress were associated with distress while caregiving and prolonged grief symptoms. CONCLUSION: Findings have implications for how providers work with families, including increasing treatment decision-making support, supporting parents in speaking to their child about illness, and, in bereavement, validating choices made. Grief interventions that use cognitive-behavioral and meaning-centered approaches may be particularly beneficial.
Lichtenthal WG; Roberts KE; Catarozoli C; Schofield E; Holland JM; Fogarty JJ; Coats TC; Barakat LP; Baker JN; Brinkman TM; Neimeyer RA; Prigerson HG; Zaider T; Breitbart W; Wiener L
Palliative Medicine
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/10.1177/0269216319900301" target="_blank" rel="noreferrer noopener">10.1177/0269216319900301</a>
If only I could turn back time-Regret in bereaved parents
bereavement; palliative; psychosocial; qualitative study; regret
INTRODUCTION: Regret about loss is one of the most intense types of regret experienced in life. Little is known about the bereavement regret of parents whose child has died of cancer. Although knowledge about parents' experiences after their child's death is vital for supporting these families, parents' regret is mostly hidden from the treating clinical staff. This study aimed to explore these parents' regret themes and their impact on their future lives. METHODS: An explorative questionnaire was sent to bereaved parents who lost a child to cancer. A total of 26 parents responded to the questionnaire. Data were analyzed using the constant comparative method. RESULTS: Regret experiences were shared by almost all participants. The focus of regret issues include parenting and interaction with the child, reflection on existing values, dealing with the disease, and neglecting the remaining siblings. The regret experience had an impact on prioritizing values, future lifestyle and contacts. CONCLUSIONS: Regret seems to be a general phenomenon among bereaved parents and strongly influences the grieving process, in the sense of reflecting on past experiences to reorient for future actions. As this study was explorative, it is significant toward deepening the understanding of bereavement regret in future. These insights are crucial when working with affected families to help them decide important issues they can care about now and will not regret later.
Sim CW; Heuse S; Weigel D; Kendel F
Pediatric Blood and Cancer
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.28265" target="_blank" rel="noreferrer noopener">10.1002/pbc.28265</a>
If only I could turn back time-Regret in bereaved parents
psychosocial; qualitative study; palliative; bereavement; regret
INTRODUCTION: Regret about loss is one of the most intense types of regret experienced in life. Little is known about the bereavement regret of parents whose child has died of cancer. Although knowledge about parents' experiences after their child's death is vital for supporting these families, parents' regret is mostly hidden from the treating clinical staff. This study aimed to explore these parents' regret themes and their impact on their future lives. METHODS: An explorative questionnaire was sent to bereaved parents who lost a child to cancer. A total of 26 parents responded to the questionnaire. Data were analyzed using the constant comparative method. RESULTS: Regret experiences were shared by almost all participants. The focus of regret issues include parenting and interaction with the child, reflection on existing values, dealing with the disease, and neglecting the remaining siblings. The regret experience had an impact on prioritizing values, future lifestyle and contacts. CONCLUSIONS: Regret seems to be a general phenomenon among bereaved parents and strongly influences the grieving process, in the sense of reflecting on past experiences to reorient for future actions. As this study was explorative, it is significant toward deepening the understanding of bereavement regret in future. These insights are crucial when working with affected families to help them decide important issues they can care about now and will not regret later.
Sim C W; Heuse S; Weigel D; Kendel F
Pediatric Blood and Cancer
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.28265" target="_blank" rel="noreferrer noopener">10.1002/pbc.28265</a>
Regret and unfinished business in parents bereaved by cancer: A mixed methods study
pediatric; neoplasm; grief; decision-making; caregivers; Regret
BACKGROUND: Prior research has demonstrated that the presence of regret and unfinished business is associated with poorer adjustment in bereavement. Though there is a growing literature on these constructs among caregivers of adult patients, the literature on regret and unfinished business in bereaved parents has been limited. AIM: The aim of this study was to examine regret and unfinished business in parents bereaved by cancer, as well as their associations with caregiving experiences and prolonged grief. DESIGN: This was a cross-sectional mixed methods study that utilized self-report questionnaires with open-ended items. SETTING/PARTICIPANTS: The multisite study took place at a tertiary cancer hospital and pediatric cancer clinical research institution. Participants were 118 parents (mothers = 82, fathers = 36) who lost a child aged 6 months to 25 years to cancer between 6 months and 6 years prior. RESULTS: Results showed that 73% of the parents endorsed regret and 33% endorsed unfinished business, both of which were more common among mothers than fathers (p 0.05). Parents were on average moderately distressed by their regrets and unfinished business, and both regret-related and unfinished business-related distress were associated with distress while caregiving and prolonged grief symptoms. CONCLUSION: Findings have implications for how providers work with families, including increasing treatment decision-making support, supporting parents in speaking to their child about illness, and, in bereavement, validating choices made. Grief interventions that use cognitive-behavioral and meaning-centered approaches may be particularly beneficial.
Lichtenthal W G; Roberts K E; Catarozoli C; Schofield E; Holland J M; Fogarty J J; Coats T C; Barakat L P; Baker J N; Brinkman T M; Neimeyer R A; Prigerson H G; Zaider T; Breitbart W; Wiener L
Palliative Medicine
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/10.1177/0269216319900301" target="_blank" rel="noreferrer noopener">10.1177/0269216319900301</a>
Decisional burden among parents of children with cancer
communication; ethics; pediatric oncology; regret; shared decision making
BACKGROUND: Despite growing evidence and support for shared decision making, little is known about the experiences of parents who hold more active roles than they wish. METHODS: This was a prospective cohort study of 372 parents of children with cancer and their oncologists at 2 academic pediatric hospitals. Parents were surveyed within 12 weeks of the diagnosis, and they were assessed for associated factors and outcomes of holding a more active decision-making role than they preferred. Parents were asked about their preferred and actual roles in decision making. Oncologists were asked to estimate parental preferences. RESULTS: Most parents preferred to share decision making with the oncologist (64% [236 of 372]); however, 13% (49 of 372) preferred oncologist-led decision making. Most parents fulfilled their ideal decision-making role (66% [244 of 372]), but a notable minority were either more involved (14% [52 of 372]) or less involved than they preferred (20% [76 of 372]; P < .0001 [McNemar test]). Oncologists recognized parents' preferred roles in 49% of cases (167 of 341); 24% (82 of 341) of parents preferred more active roles than the oncologist recognized, and 27% (92 of 341) preferred less active roles than recognized. No parent or communication characteristics were found that were associated with parents' holding a more active role than desired in decision making. Parents who held more active roles in decision making than they wished had higher odds of decisional regret (odds ratio, 3.75; 95% confidence interval, 2.07-6.80; P < .0001). CONCLUSIONS: Although many parents fulfill their desired roles in decision making about their child's cancer, some are asked to take on more active roles than they wish. Holding a more active role than desired may lead to increased decisional regret.
Sisk B A; Kang T I; Goldstein R; DuBois J M; Mack J W
Cancer
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/10.1002/cncr.31939" target="_blank" rel="noreferrer noopener">10.1002/cncr.31939</a>