"I'm Afraid If This Goes Wrong… What Will Become of Me?": The Psychological Experience of Grandparents in Pediatric Palliative Care
Palliative Care; pediatric palliative care; family; life-limiting conditions; grandparents; psychological experience
Portugal has been identified as the European country with the most rapid evolution of Pediatric Palliative Care provision, where approximately 7800 children have life-limiting conditions. This is a highly complex experience not only for the children and their parental caregivers, but also for their healthy siblings and grandparents. The present descriptive-exploratory study seeks to contribute to the understanding of the psychological experience of life-limiting conditions in grandparents. A total of 19 families, consisting of 15 grandmothers and 4 grandfathers, completed a sociodemographic and clinical data sheet and a semi-structured interview was conducted in which they shared their testimony. The results of the thematic analysis highlighted an integrated view on 10 important dimensions in the grandparental experience and promoted creative responses by means of their own perspective. However, it has some limitations, such as the small sample size and the data collection procedure via telephone. The results contribute to the design of specific intervention methodologies in an ecosystemic approach and suggest further research to explore more protective factors and communication with health professionals. For psychological intervention, it is suggested considering the identification of individual and family resources that contribute to the activation of key processes in resilience and posttraumatic growth.
Nogueira AJ; Ribeiro MT
Healthcare
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/healthcare11172391" target="_blank" rel="noreferrer noopener">10.3390/healthcare11172391</a>
'I No Longer Feel Alone': Meeting the Needs of Bereaved Grandparents Through a Children's Hospice Support Group
Bereavement; Grief; Child; Palliative care; Adult; Children; Hospice; Grandparents; Family centred care
BACKGROUND: Children's hospices provide a range of family-centred care services, including bereavement support. Not all hospices provide specific services for grandparents. AIM: To explore how a hospice-based bereavement support group supported grandparents in their grief following the death of a grandchild. METHODS: Grandparents attending a group were invited to complete an anonymous questionnaire. Questionnaires from eight groups, run between 2015 and 2019 were collated and interpreted to identify themes. FINDINGS: A total of 121 grandparents attended the groups; 113 returned the questionnaires (93% response). A total of three superordinate themes were identified: environment and space, being with people who understand, and the opportunity to hear the stories of others. Grandparents valued hearing the stories of others, providing an opportunity to reflect on the experience of others. CONCLUSION: Grandparents felt supported and validated by the group. Facilitated sessions increased coping and resilience of participants, enabling grandparents to support their partner, adult children and surviving grandchildren more effectively.
Tatterton M J; Lyon JA
International Journal of Palliative Nursing
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.12968/ijpn.2022.28.5.193" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2022.28.5.193</a>
Evaluation of a grandparent bereavement support group in a Pediatric Palliative Care Hospice
bereavement; grandparents; grief; hospice care; pediatric palliative care
This study aimed to explore grandparents' experiences of grief after the death of a grandchild, their perception of socially supportive behavior as well as their satisfaction with a bereavement support care. A six-session bereavement support group was implemented, followed by a cross-sectional survey with open-ended questions. The death happened mostly in the last 2 years (26, 90%). The findings revealed the presence of grief (mean score of 67, SD 13) and existing perception of socially supportive behaviors (mean score of 79, SD 23) after participation in the bereavement group. The thematic analysis showed three themes of 'We are feeling it; There are ways to heal and return to a different normal; We want to help our family'. This study adds to the existing literature about the experience of grandparents coping with grief, explores some of their challenges, and needs after the death of a grandchild. Copyright © 2021 Informa UK Limited, trading as Taylor & Francis Group.
Arnone M; Dumond LG; Yazdani N; El-Baroudi R; Pouliot A; Modanloo S
Progress in Palliative Care.
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/10.1080/09699260.2021.1988311" target="_blank" rel="noreferrer noopener">10.1080/09699260.2021.1988311</a>
"This is the worst that has happened to me in 86 years": A qualitative study of the experiences of grandparents losing a grandchild due to a neurological or oncological disease
bereavement; child; death; grandparents; pediatric palliative care
Purpose: Pediatric palliative care focuses mainly on the children suffering from a life-limiting disease, but always includes parents and siblings. However, grandparents are also often highly involved in caring for the child and require additional attention. Therefore, the aim of this study was to investigate the experiences of grandparents during the end-of-life care and after the death of a grandchild. Design and Methods: A qualitative approach using semi-structured interviews was chosen. Fifteen grandparents of 10 children who had died of neurological or oncological diseases were interviewed. Participants were recruited among the families cared by the pediatric palliative care team of a children's hospital in northern Switzerland. Grandparents were interviewed at least 1 year after the death of the grandchild. The data was analyzed employing reconstructive interview analysis. Result(s): Regardless of the child's diagnosis and circumstances of death, the participants described how the child's death had a major impact on them and their entire family. Grandparents felt obligated to support the family and constantly be a source of support for the parents. They bore a heavy psychological burden as they cared and mourned not only for their dying grandchild but also for their own daughter or son. Grandparents struggled with their ability to communicate about disease and death. They tried to process and make sense of their loss by remembering the deceased child. Practice Implications: These findings emphasize the importance of identifying and understanding grandparents' suffering. Pediatric palliative care teams can achieve this by actively making contact with grandparents, taking their concerns seriously and demonstrating appreciation for their role in supporting the family. Copyright © 2020 Wiley Periodicals LLC
Flury M; Orellana-Rios C; Bergstrasser E; Becker G
Journal for Specialists in Pediatric Nursing.
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/10.1111/jspn.12311" target="_blank" rel="noreferrer noopener">10.1111/jspn.12311</a>
How Grandparents Experience the Death of a Grandchild With a Life-Limiting Condition
bereavement; palliative care; hospice care; grief; child; family nursing; grandparents
Traditionally, family-focused care extends to parents and siblings of children with life-limiting conditions. Only a few studies have focused on the needs of grandparents, who play an important role in the families of children with illness and with life-limiting conditions, in particular. Interpretative phenomenological analysis was used as the methodological framework for the study. Seven bereaved grandparents participated in this study. Semistructured, individual, face-to-face interviews were conducted. A number of contextual factors affected the experience of bereaved grandparents, including intergenerational bonds and perceived changes in role following the death of their grandchild. The primary motivation of grandparents stemmed from their role as a parent, not a grandparent. The breadth of pain experienced by grandparents was complicated by the multigenerational positions grandparents occupy within the family. Transition from before to after the death of a grandchild exacerbated the experience of pain. These findings about the unique footprint of grandparent grief suggest the development of family nursing practice to better understand and support grandparents during the illness of a grandchild, in addition to bereavement support.
Tatterton MJ; Walshe C
Journal of family nursing
2018
<a href="http://doi.org/10.1177/1074840718816808" target="_blank" rel="noreferrer noopener">10.1177/1074840718816808</a>
The unique grief of grandparents
Bereavement; Family Centered Care; Grandparents; Hypoplastic Left Heart Syndrome; Infant; Infant Death -- Psychosocial Factors; Male; Nursing Practice; Pediatric Nursing
Nurses are looking beyond parents to provide bereavement support for the wider family
Nurse consultant Michael Tatterton’s research revealed that when a child with a life-limiting condition dies, the grandparents’ ‘unique footprint of grief’ is often overlooked. The hospice where he conducted his PhD study has changed how it supports grandparents to reduce their isolation and allow them to grieve.
Cole E
Nursing Standard
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/10.7748/ns.33.1.56.s17" target="_blank" rel="noreferrer noopener">10.7748/ns.33.1.56.s17</a>