From 17.09.2023 to 30.11.2023, the Family Audiobook Association sent an email to 234 addresses that included the link to the anonymous online questionnaire. Of the 234 emails sent, 214 email addresses were successfully reached by not receiving a reply of “email address not valid”. Nevertheless, the precise number of individuals reached remains uncertain, as the email cover letter requested email recipients to forward the online survey link at their initiative to those to whom the family audiobook is addressed. The aim was to reach as many as possible rather than to be representative. Finally, 186 respondents filled in the online survey.

Half of these 186 respondents are terminally ill parents with dependent children under the age of 18 (95), and the other half are close persons (91). Most of the terminally ill parents (82%) and 60% of the close persons are female (Fig. 1). The question regarding familial status was asked only to terminally ill parents themselves. The majority of the terminally ill parents are married (82%), 12% are in a partnership, and a minority are widowed, single, or separated.

Fig. 1

Sample size and distribution

Terminally ill parents’ reflections on family audiobook

From the perspective of the terminally ill parent, it was of interest to ascertain whether the production and the possibility of passing on a family audiobook to their children is perceived as a burden. Table 1 reveals that feeling at ease was reported by a significant majority of respondents: 81% for having achieved it, 71% for having received it, and 76% for being able to pass it on. At the same time, a small proportion of terminally ill parents indicated on a five-point Likert scale that they would feel burdened by having reached it (5%), having recorded it (3%), or being able to pass it on to their children (3%) (Table 1).

Table 1 Terminally ill parents’ feelings about the family audiobook; percentages (n = 90)Passing on a family audiobook

When all respondents were asked who would give the reminiscence “family audiobook” to the children, 32% named the terminally ill parent, followed by the children’s partner or father at 54% and family members at 9%. “Other” and “don’t know” each accounted for 5% of responses. At the time of the survey, 38% of respondents stated that they did not know when they would pass on to the children. According to 24% of the respondents, the children have already received the family audiobook, a further 24% will receive it after the death of the terminally ill parent, and 12% will pass it on when the children reach a certain age.

Use of family audiobook

It is important to note that the online survey was completed by many adults rather than children, thereby representing the perspectives of terminally ill parents and close persons who answered on their behalf. In light of this, based on 100% of all responses and in descending order, the most frequently mentioned person is a partner, followed by a family member or friend. Table 2 gives an insight into the study focus, whether and how often the audiobook is used. This question was posed to terminally ill parents and close persons (Table 2) and at the level of the children as an external assessment by the respondents (Table 3). Up to 60% of all respondents listened to the audiobook immediately after receiving it, more than 30% at least within six months, and 9% after 6 months. More terminally ill parents (68%) stated that they listened to the family audiobook immediately after receiving it. This was the case for 49% of responses from close persons. A multiple-response option was provided to identify potential accompanying persons while listening. This analysis is based on a scale of 100%, which represents the totality of 192 responses. The results indicate that 60% of respondents listened to the content alone, 16% with a partner, 13% with children, and 5% with parents.

Table 2 Post-received listening period and listening frequency; percentagesTable 3 Estimation of children’s listening frequency; percentages

The frequency of listening was measured by using a four-point scale, with responses ranging from “often” to “never.” Table 2 demonstrates that a total of 45% of the close persons and 20% of the terminally ill parents listen to the family audiobook “sometimes.” A total of 25% of terminally ill parents and 8% of close persons reported that they had never listened to the family audiobook at the time of the survey.

This raises the question, “How do you feel when you listen to the family audiobook?” Of all terminally ill parents and close persons, 57% indicated a state of emotional ambivalence, feeling partly sad and partly happy at the same time. The remaining 43% reported experiencing either (very) sad or either (very) happy to varying degrees (18% vs. 26%) while listening to the family audiobook. Terminally ill parents with dependent children under the age of 18 were more likely to report high levels of happiness (33%) than close persons (17%) (Table 2). In terms of the order in which respondents listened to the family audiobook, 69% selected the option of listening to it in a chapter-wise manner, while 33% listened to it from the first to the last chapter.

In those cases where the family audiobook has already been given to the children, 85% of the terminally ill parents and close persons confirmed that the children have already listened to it. On a four-point scale from “often” to “never,” 48% of terminally ill parents and close persons indicated that the children rarely listen to the family audiobook, 28% sometimes, and 12% often (Table 3).

External impression of influence on children

In terms of the impression of influence on the children, a spectrum of emotional reactions, from sadness to happiness, was reported by terminally ill parents and close persons, which went hand in hand with the different uses and influences on the grieving children.

“Two of the three children occasionally listen to the audiobook that my husband has recorded. However, this depends very much on their mood and stage of grief. The eldest doesn't want to listen to anything at all.” (close person)

“Mixed, one chapter the child didn't want to continue listening to. Now she listens to individual chapters more often, as I have made a part of it available on a Tonie [an audio player brand, authors’ note]” (close person)

“My son listens very attentively. And when friends come to play, it is also listened to.” (close person)

Some terminally ill parents who are facing the end of their lives listened to the family audiobook either during the production process or immediately after the finished audiobook was delivered. In cases where the family audiobook was finalised and made available to the children, a terminally ill parent wrote the following:

“I'm still here. That's why the kids don't hear it that often. But they know that when I'm no longer there, they can hear my voice. I think that's very important for the children. I'm sure it makes them sad too, but they're glad that I've recorded this audiobook. That way I'm always there somehow.” (terminally ill parent)

The respondents’ comments demonstrated that the process of remembering is strongly influenced by the experience of hearing the voice of the deceased parent while listening to the life events or lullabies.

“Very good, I listen to it again and again. Mum's voice is good.” (close person)

“My children are 5 and 7 years old. After their father died, they said at some point that they couldn't remember Dad's voice, so we listened to the audiobook. The 5-year-old was two years old at the time of my husband's death, he can't do much with it yet, but the 7-year-old asks about it from time to time.” (close person)

The respondents perceived the family audiobook as a valuable and cherished digital legacy, as well as an enriching form of remembrance. This is emphasized by the personal, carefully selected stories on the audiobook and the experience of hearing the voice of the dead or dying parent through the medium of the audiobook, which will, therefore, not be forgotten.

“On the positive side, I have the impression that it is seen as a ‘treasure’ for ‘later’.” (terminally ill parent)

Reasons for not listening to the family audiobook

23 of the 186 responses of terminally ill parents and close persons who had not listened to the family audiobook were asked to provide an explanation using a multiple-response scale and an option to write in their own words. The most frequently selected option (n = 13) was “other (please specify)”, followed by the option “need for distance”, which was the second most frequently selected option (n = 6). The aforementioned emotional aspect (6) is one of the reasons followed by “recordings have been stopped” or “have not yet been received” (n = 3). At the time of the survey, terminally ill parents and close persons provided several reasons for their decision not to listen to the recordings. These reasons also included their involvement in the recordings, the inability to contact the father, and the existence of a rule preventing the listening of the recordings until one year after the death influenced their decision not to listen. One terminally ill parent wrote: “Then you think of too many things you would have liked to have said or done differently.”