The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care
child; Palliative Care; article; female; human; male; social support; palliative therapy; coping; sibling; clinical article; Portugal; clinical practice; adolescent; caregiver; semi structured interview; family; grandchild; psychologic assessment; Coping Strategy Questionnaire; clinical assessment tool; grandparent
In Portugal, there are over 7800 children with life-limiting conditions. The context of pediatric palliative care represents a complex and distressing experience for families. Compared to parental caregivers and healthy siblings, grandparents are underexplored in the literature and clinical practice. The aim of the present study is to propose a psychological experience assessment tool of grandparents in this context. It consists of a sociodemographic and clinical data sheet and a semi-structured interview based on sharing a testimony with other grandparents. On the basis of the latter, 10 dimensions were explored through the grandparents’ own perspective: representation of the illness; representation of the sick grandchild; changes in routine and life; family impact; grandparents’ contributions to the family system; social support and coping strategies; emotional impact; triple concern; needs identification; and post-traumatic growth. The tool can be used in person or remotely and may be combined with other instruments. Its application enables a personalized identification of needs and challenges for each family, promoting the adjustment of the clinical intervention to their wellbeing and resilience from an eco-systemic perspective. The clinical tool is presented in detail and its importance in the context of research and systemic intervention is discussed.
Nogueira AJ; Ribeiro MT
Clinics and Practice
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/clinpract14010010" target="_blank" rel="noreferrer noopener">10.3390/clinpract14010010</a>
Wrapped with love-art therapy in paediatric palliative care
human; child; expectation; female; male; palliative therapy; comfort; controlled study; conference abstract; narrative; human experiment; art therapy; extended family; grandchild; grandparent; program effectiveness; rest
Introduction To discuss the extended family support that is required in children's palliative care, focusing on Grandparents, who sometimes may be seen as the 'forgotten mourners'. Objectives Utilizing art psychotherapy in a group setting to encourage peer support between ten grandparents (bereaved and non-bereaved) within our inaugural weekend Camp program. Methods Detailing one art therapy session the first morning of the Camp where each of the group chose a pebble to represent their grandchild. They were then invited to choose a different layer, from an extensive array of art materials, to represent each of the important people that wrap, swaddle, comfort, protect, support, and surround this child. There was time dedicated to share their experience and/or artwork within the confidential safe space of the group. This allowed them to express some of the difficulties of having a grandchild with a life limiting illness and the dynamics within the extended family. Results Anonymous pre-and post-narrative evaluations were used to assess expectations prior to the Grandparents weekend and the effectiveness of the program. Discussions within the group at the end of the session and throughout the rest of the weekend revealed that although it had been hard for some to open up, and at times emotional, it was therapeutic and helped form strong bonds within the grandparents. Conclusions It was a useful tool to share internally with the multi-disciplinary team, with added insight utilizing this creative medium. Would possibly like to evaluate more specifically the art therapy component of the program in future camps.
King J
Supportive Care in Cancer
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/10.1007/s00520-018-4193-2" target="_blank" rel="noreferrer noopener">10.1007/s00520-018-4193-2</a>
"I don't want this to be in my biography": A qualitative study of the experiences of grandparents losing a grandchild due to a neurological or oncological disease
human; child; male; terminal care; clinical article; diagnosis; comfort; palliative therapy; conference abstract; friend; Switzerland; oncology; semi structured interview; qualitative research; grandchild; grandparent; literature; cause of death; memory; son
Background/aim: Pediatric Palliative Care (PPC) in hospitals mainly focuses on the parents and siblings of children suffering from a life limiting disease. However, most grandparents are also highly involved in the caring of the child and require additional attention. As little is known about the experiences of grandparents losing a grandchild, this study aimed to address this research gap by investigating the experiences of grandparents throughout the end of life care and after the death of a grandchild. Neurological and oncological diseases are the most common causes of death in children older than one year. Methods: A qualitative approach using semi-structured interviews was chosen. Fifteen grandparents of ten deceased children were interviewed. Four grandchildren died due to an oncology disease and six to a neurological one. Participants were recruited among the families attended by the PPC team of a children's hospital in northern Switzerland. Grandparents were interviewed at least one year after the death of the grandchild. The data was analyzed employing reconstructive interview analysis. Results: Regardless of the diagnosis and death circumstances of the child, participants described major impact that the child's death had on them and their entire family. Grandparents felt obliged to support the family and constantly be a supportive pillar for the parents. They beared a double psychological burden as they care and mourn twice; for their dying grandchild and for their daughter or son. Grandparents also struggled with communication difficulties concerning disease and death when in contact with other family members, friends and acquaintances. They tried to make sense and processed their loss by remembering the deceased child and finding comfort in the fact that the child and the family did not have to suffer longer painful symptoms. All participants reported being grateful for the time they were able to spend with their grandchild. Conclusion: These findings emphasize the importance of understanding and identifying the suffering of the grandparents. PPC teams can achieve this by actively making contact with them, taking their concerns seriously and demonstrating appreciation for their role in supporting the family.
Flury M; Orellana-Rios C; Bergstrasser E; Becker G
Palliative Medicine
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/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</a>