Young parents diagnosed with a life-limiting disease could participate and create an audiobook for their young children. The audiobook itself was recorded over several days and edited by qualified radio journalists. After providing informed consent participants were interviewed twice over the course of the intervention regarding expectations, concerns, motivation, and experiences. Interviews and notes were transcribed verbatim and were analyzed using content analysis. This part of the evaluation is already published (9). In addition, participating patients were assessed twice with questionnaires before and after the audiobook recording. We conducted the SMiLE and analysed the results with SPSS version 26.
Participants were recruited by a social worker, a nurse, or a psycho-oncologist with research training or asked for participation themselves. Due to high media attention to the project, most of the patients asked for participation themselves. Patients had to sign a self-disclosure form about their case history. Inclusion criteria were checked and patients were included following written informed consent. None of the interviewed patients was treated by members of the recruitment or interviewer team. The research ethics committee of the University Hospital Bonn reviewed and approved the study (no.389/16). Inclusion criteria for this study were (1) patients diagnosed with life-limiting disease, (2) fluent in the German language, (3) 18 years of age or older and (4) having at least one child younger than 18 years. Exclusion criterion was psychiatric impairment such as dementia, psychosis, severe depression or diagnosed personality disorder.
Participants were interviewed by an experienced biographical researcher and a physician specialist in palliative care (HC physician and MH psycho-oncologist). Both researchers were not part of patient’s care network. All data were collected in a standardized way administering accuracy of study protocol. In addition, we followed the standardized test instructions given by the authors of the SMiLE (10, 11).
The Schedule for Meaning in Life Evaluation (SMiLE) was used as a paper-pencil test.
For all patients and researchers, psychological counselling was offered to address issues of emotional distress, fear, anger, or other emotions.
Assessment of SMiLE was conducted at two-time points. In addition, HC and MH conducted semi-structured interviews pre and post the creation of the audiobook as described in Cuhls et al. (9). The form of the assessment changed in the run of the project from face to face to telephonic contacts due to restrictions from Covid-19.
Items given by participants were assigned into categories as defined by Fegg (11) by HC and MH. In case of differences, assignment was discussed in depth until consent was reached. Quantitative data was organized and analysed with SPSS version 26.
In the SMiLE the participants indicate areas that provide meaning to their lives in their current situation. The participants nominate individual items from three to seven areas (n = number of areas), but this is only a suggestion (participants are free to name more areas). In a second step (level of satisfaction) participants rate the current level of satisfaction with each area (s1…sn) on a scale ranging from “-3 very unsatisfied” to “+3 very satisfied”.
Finally, the importance of each area (w1…wn) is rated with an eight-point adjective scale, ranging from “0= not important” to “7= extremely important” with “3 =important” and “6= very important”.
We followed the protocol given on the website of Professor Fegg (11) and discussed upcoming questions by email. Consistent with Feggs' definitions of terms, open-ended responses were classified into their respective categories (12). Several parents used family and children as synonymous. On the advice of Professor Fegg, we put both items in the category family.
Comparability might not be given with all studies in all dimensions due to a different number of categories. The categories art/culture and growth are missing in older studies (8, 12, 13).
The Index of Satisfaction (IoS) indicates the mean satisfaction or dissatisfaction with the individual MiL areas (range 0-100, with higher scores reflecting higher satisfaction). To obtain a clear index varying from 0-100 the satisfaction ratings are recalculated (s’i). “Very satisfied” (si = -3) is set to s’I = 0 and “very satisfied” (si = +3) is set to s’I = 100.
The index of Weighting (IoW) indicates the mean weighting of the MiL areas (range, 0-100, with higher scores reflecting higher weights).
In the total SMiLE index (Index of weighted satisfaction; IoWS) the ratings for importance and satisfaction are combined (range 0-100, with higher scores reflecting higher MiL).
Levels and weight assigned to particular areas are independent and can change independently. A person may be satisfied in a particular area but assign little importance to it. Other areas may be described at a high level of both importance and satisfaction. An area that is going worse but of little importance will have less implication for the individual MiL. A very important area that is going badly has a higher impact on the person. This impact is reflected in the IoWS.