Audiobooks from terminally ill parent for their children – a qualitative evaluation

Cuhls, Henning; Hesse, Michaela; Ateş, Gülay; Radbruch, Lukas

doi:10.1186/s12904-021-00872-6

Cited by 3 publications

(2 citation statements)

References 20 publications

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“…[1,11,12] Biographical interventions, for example, have been shown to have a positive impact on patients in palliative care, such as improving quality of life, reducing depression and coping with life limitations. [13][14][15] Also, knowing that positive effects on depression, well-being and quality of life can be achieved through biographical work in gerontology and geriatrics, biographical storytelling was used in search for an intervention for terminally ill parents with minor children. [16,17] We nd a broad range of different interventions such as Dignity Therapy, Life Review, and Reminiscing, and these positive effects could be found in overall designs.…”

Section: Introductionmentioning

confidence: 99%

The usage of family audiobooks as a legacy for grieving minor children - an exploratory quantitative analysis

Ateş,

Hesse,

Cuhls

2024

Preprint

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Background Terminally ill parents with minor children require comprehensive support. We find a broad range of interventions such as Dignity therapy or Life Review. There are several studies concerning the effects of biographical interventions in palliative care, but research on the usage of digital reminiscence is sparse. Since 2017, terminally ill parents have been offered the opportunity to record an audio book for their minor children. It also offers parents with a terminal illness the opportunity to use their own voice to influence how and what aspects of themselves they want to be remembered. This professionally supported, voluntary service is free of charge and unique in Germany. The objective of this study was to provide novel insights into the satisfaction with and use of the family audiobook, as well as the effects on children, by surveying the terminally ill parent and their related persons. Methods A survey was conducted online among terminally ill parents and their related persons, who were identified and contacted through the Family Audiobook Association in Germany. The anonymous online survey was accessible between September 2023 and November 2023. A descriptive analysis of the quantitative data was conducted using the statistical software package SPSS. Results 186 respondents, 95 terminally ill parents and 91 related persons, provided responses to the online survey. Almost all terminally ill parents felt eased to have recorded a family audio book. The two groups exhibited differences in the manner in which they used and listened to the family audiobook. The open answers provided insight into the emotional and situational context in which the audiobook was being used. While some children are observed listening to family audiobooks with their parents or friends, other children are not yet ready for this. Conclusions The audiobook offers terminally ill parents with minor children a valuable opportunity to tell their own biographical story, to offer support to the bereaved in remembering and to preserve the voice of the deceased for the children. In addition, this approach could help healthcare professionals to reduce the stress associated with providing end-of-life care for terminally ill parents with minor children.

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Section: Introductionmentioning

confidence: 99%

The usage of family audiobooks as a legacy for grieving minor children - an exploratory quantitative analysis

Ateş,

Hesse,

Cuhls

2024

Preprint

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“… 1 In a previous study Cuhls et al showed that a biographical intervention can help patients with young children. 2 …”

Section: Introductionmentioning

confidence: 99%

Meaning in life of terminally ill parents with minor children compared to palliative care patients – a quantitative analysis using SMiLE

Cuhls,

Hesse,

Heuser

et al. 2024

Palliat�Care

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Background: Caring for terminally ill patients with minor children can be very stressful. The perceived quality of life is significantly influenced by the Meaning in Life (MiL). No studies were found that focus on the prioritized special needs of this patient group. Objectives: The aim is to compare and contrast terminally ill parents with minor children and palliative care patients in Germany, in order to provide appropriate support beyond medical, nursing or therapeutic interventions. Methods: Terminally ill parents diagnosed were surveyed using a validated instrument ‘Schedule for Meaning in Life Evaluation (SMiLE)’. The study listed various areas that contribute to the MiL, followed by an evaluation of their importance and satisfaction levels. The researchers then compared these findings with data collected from palliative care patients. Results: In Germany, 54 patients, mostly female and with a mean age of 43, were included in this study between February 2017 and September 2020. The median age of the 96 children during the survey phase was 7 years. The comparison group consists of 100 palliative care patients in Germany; mostly aged 50 years and older. For terminally ill patients most important areas were in decreasing order family (100%), social relations (80%), leisure time (61%), nature/animals (39%) and home/garden (30%). Although the overall indices are close between both groups, there are significant and highly correlated differences between them. Parents felt limited by their illness in being a mother or father, as they wanted to be. Conclusion: The involvement with SMiLE led patients to consider their coping resources. The areas relevant to terminally ill parents differed from those relevant to palliative care patients. All participants identified family as the most important factor for MiL. The results suggest that evaluating MiL can serve as a coping strategy and help terminally ill parents with minor children.

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The usage of family audiobooks as a legacy for grieving children — an exploratory quantitative analysis among terminally ill parents and close persons

Ateş,

Hesse,

Cuhls

2024

Support Care Cancer

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Background Since 2017, terminally ill parents with dependent children under the age of 18 have been able to record an audiobook for their dependent children. This service allows them to narrate how they would like to be remembered in their voice. The family audiobook is a professionally supported, voluntary, free service that is unique in Germany. There is little research on digital memories for children. The study aims to understand how this service is used and its influence on children through responses of terminally ill parents and close persons. Methods An anonymous online survey, accessible between September 2023 and November 2023, was conducted among terminally ill parents and their close persons with support from the Family Audiobook Association in Germany. Analyses were carried out using SPSS. Results 186 respondents, 95 terminally ill parents, and 91 close persons completed the online survey. Almost all terminally ill parents felt eased to have recorded a family audiobook. The two groups showed differences in how they used the family audiobook and how often they listened to it. While some children listen to the family audiobook with their bereaved parents or friends, other children are not yet ready for this, according to the open-ended responses of terminally ill parents and close persons. Conclusions The family audiobook provides a valuable opportunity for terminally ill parents with dependent children under the age of 18 to tell their own biographical story, offer support to the bereaved in remembering, and preserve the voice of the deceased for the children. In addition, this approach could help healthcare professionals to reduce the stress associated with providing end-of-life care for terminally ill parents.

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Audiobooks from terminally ill parent for their children – a qualitative evaluation

Cited by 3 publications

References 20 publications

The usage of family audiobooks as a legacy for grieving minor children - an exploratory quantitative analysis

The usage of family audiobooks as a legacy for grieving minor children - an exploratory quantitative analysis

Meaning in life of terminally ill parents with minor children compared to palliative care patients – a quantitative analysis using SMiLE

The usage of family audiobooks as a legacy for grieving children — an exploratory quantitative analysis among terminally ill parents and close persons

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