Meaning in Life of Terminally Ill Parent with Young Children – A Quantitative Evaluation with SMiLE


 Background Increasing the quality of life is one of the objectives of palliative care. Meaning in life has a significant influence on the perceived quality of life. We found no studies focusing on patients with young children.Methods Young parents diagnosed with life-limiting disease could participate and create an audiobook. Patients were assessed using Schedule for Meaning in Life Evaluaton (SMiLE) pre and post intervention. The SMiLE is a validated instrument to assess meaning in life. Patients list their individual items that provide meaning in life. In a second step they are requested to rate their current level of satisfaction and in a last step they are asked to rank the importance of each item. Overall indices of weighting, satisfaction and importance are calculated. In addition, participants were interviewed twice over the course regarding expectations, concerns, motivation, and experiences.ResultsThe data were collected from February 2017 till September 2020. Fifty-four patients with ninety-six children at a mean age of seven years could be included. The involvement with the SMiLE made patients think about their resources. Most important items were in decreasing order family (100%), social relations (79.6%), leisure time (61.1%), nature/animals (38.9%), and home/garden (29.6%). Index of weighting (IOW) was 81.5, index of satisfaction (IOS) was 71.4, and a total SMiLE Index (IOWS) was 72.4. Parent felt limited by their illness in being a mother or father, as they wanted to be.ConclusionItems relevant for young parent showed differences to evaluations of cancer patients and palliative care patients. Most important item for meaning in life is the family numerated by all participants. The results indicate that evaluation of meaning in life is a coping strategy and helps young parent with young children.


Results
The data were collected from February 2017 till September 2020. Fifty-four patients with ninety-six children at a mean age of seven years could be included. The involvement with the SMiLE made patients think about their resources. Most important items were in decreasing order family (100%), social relations (79.6%), leisure time (61.1%), nature/animals (38.9%), and home/garden (29.6%). Index of weighting (IOW) was 81.5, index of satisfaction (IOS) was 71.4, and a total SMiLE Index (IOWS) was 72.4. Parent felt limited by their illness in being a mother or father, as they wanted to be.

Conclusion
Items relevant for young parent showed differences to evaluations of cancer patients and palliative care patients. Most important item for meaning in life is the family numerated by all participants. The results indicate that evaluation of meaning in life is a coping strategy and helps young parent with young children.
Background Increasing the quality of life is one of the objectives of palliative care. Studies could con rm that quality of life is mainly in uenced by patients´ sense of meaning and purpose in life (1,2). Thus meaning in life has a high impact on psychological distress and we nd a great body of research dealing with meaning.
Studies found a correlation between psychological adjustment to stressful events such as life-limiting disease and the role of meaning. This was described as meaningmaking model by Park et al. (3). These ndings among others led to an evaluation of meaningmaking intervention with aspects of life priorities and aim to foster coping and mastery of illness (4,5). Park et al. (3) distinguished between meaningmaking and meaning made. Meaningmaking was de ned as understanding of a stressor as appraised meaning and incorporation of this understanding in a global meaning system. Meaning made was de ned as growth, life meaningfulness and reduced inconsistency of just-world beliefs (6). These categories found consideration in a great number of assessment instruments. They assess the presence of and search for meaning, ask for meaning in crisis, or sources of meaning-making, and meaningful activities (7). We decided to use the Schedule for Meaning in Life Evaluation (SMiLE). It was developed as a respondent-generated instrument for the assessment of individual meaning (8). This instrument provides an individualized measure because items that give meaning are generated by the patient him or herself.
The aim of this study was to evaluate 1. the meaning of life areas in parent with young children in provision of palliative care, and 2. to examine differences to general PC patients or other samples tested with regard to meaning in life with SMiLE.

Methods
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 quali ed 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.

Setting/participants
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) uent 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.

Provider
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.

Data collection
Assessment of SMiLE was conducted at two-time points. In addition, HC and MH conducted semistructured 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.

Analysis
Items given by participants were assigned into categories as de ned 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.

Procedures
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 (s 1 …s n ) on a scale ranging from "-3 very unsatis ed" to "+3 very satis ed".
Finally, the importance of each area (w 1 …w n ) 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' de nitions of terms, open-ended responses were classi ed 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).

Analysis
The Index of Satisfaction (IoS) indicates the mean satisfaction or dissatisfaction with the individual MiL areas (range 0-100, with higher scores re ecting higher satisfaction). To obtain a clear index varying from 0-100 the satisfaction ratings are recalculated (s'i). "Very satis ed" (s i = -3) is set to s' I = 0 and "very satis ed" (s i = +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 re ecting 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 re ecting higher MiL).
Levels and weight assigned to particular areas are independent and can change independently. A person may be satis ed 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 re ected in the IoWS.

Results
The data were collected from February 2017 till September 2020. Fifty-eight patients could be included. Four patients dropped out due to a declining performance status after their inclusion. Finally, 54 people were able to participate in the study; 13 men and 41 women. The average age was 43. Most of them were married (n=45), 7 divorced and 2 single. All but four had cancer (see Table 1).

SMiLE -descriptive comparison between groups
As expected, the individual items of SMiLE show large differences between the representative study with the general population and our study with dying parents with young children (Figure 1). This is also evident from the total scores of IoW, IoS and IoWS ( Table 2). Comparison of SMiLE scores shows similarities in the representative population samples and in the samples with persons in need of palliative care (Figure 1). The largest differences are between the groups of the representative population sample and the group with palliative care needs. Even though the SMiLE scores for the group in need of palliative care are very close to each other, there are also differences in the individual items present ( Figure 2). Furthermore, all samples show almost identical median ages of the respondents, namely up to 49 years of age (8, 13,14). The analysis of notes taken during the evaluation of the SMiLE showed a new awareness of resources.
"It brought to my mind that I used to have a lot of creativity and now I have a number of projects and ideas." (R77-PS) Rating the level of satisfaction let patients assess their role as father or mother.
"I hang around all day not able to play or cavort with my child." (S27-OO) "Cars are my passion and I will not be able to teach and share this with my son." L31-JG)

Discussion
There are numerous publications investigating the quality of life with SMiLE in different entities (8, 10,[14][15][16][17][18][19][20]. In the following section, we compare our sample (terminally ill parent with young children; TP) with a sample of palliative care (PC) patients to show distinctions in the ranking (8).
Hence young parents with little children show different categories of meaning than palliative care patients in general. The outstanding role of parenting seems to shift priorities to social and family life spending time at home and in nature. Primary focus lays on the young children and therefore partnership might not be mentioned as often as by palliative care patients. In the face of an incurable, advanced disease with a limited lifetime might in uence the importance of health. This might also be a reason for little regard for health. Due to the same number of categories, we compared our ndings with a study of Bernard et al. with a representative sample in Switzerland and found signi cant differences in ranking (see gure1). The extent of accordances seems to depend on the sample. Indices such as IoS, IoW, IoWS are comparable and show accordances in similar samples (see Table 2). However, we still see differences in cancer patients, palliative care patients, and parents with little children. Overall we see satisfaction scores are smaller in parents with young children and palliative care patients than in representative samples. The category of satisfaction is the smallest item in parents (3.7%) in comparison with all other samples (cancer 8%, PC 5.3%). This might be due to concentration on the children and deny of sel sh needs.
In In the context of palliative care, SMiLE seems to be a good elicitation tool to sort and rank patients' endof-life priorities. The use of the instrument can save time, give less talkative a voice, easily embedded in further treatment plans and set processes in motion in a focused way.
For terminally ill parents, audiobooks are an opportunity to leave their personal life stories. In this way, they submit reminiscence and might have a lasting effect on the family system beyond their own death. Further research is now necessary to survey the effects of the audiobook on bereaved children. This would ll another scienti c gap and answer the impact of digital inheritance on the bereaved.

Study limitations
Our sample was small and not representative. With increasing awareness and scarce human resources, self-selection bias also increases, as voluntary requests predominate over time. In addition to the limitations to the survey instrument listed by Bernard (13), telephone interviews pose another challenge for this group. The pandemic situation led to a change in study performance from face-to-face to telephone and might have in uenced participants' answers. Interviews by telephone might have been exhausting for this sample in reduced health status. Assignment to categories leaves room for interpretation though we discussed every single item in depth.

Conclusion
Items relevant for young parent showed differences in evaluations of cancer patients and palliative care patients. The most important item for meaning in life is the family enumerated by all participants. The results indicate that evaluation of meaning in life is a coping strategy and helps young parent with young children.

Declarations
All methods were carried out following relevant guidelines and regulations such as COREQ (25), GCP and the Declaration of Helsinki.
Ethics approval and consent to participate The research ethics committee of the University Hospital Bonn reviewed and approved the study (no.389/16). All participants have given written informed consent. For all patients and researchers psychological counselling was offered to address issues of emotional distress, fear, anger, or other emotions.

Consent for publication
Not applicable Availability of data and materials The recorded datasets, transcripts and audiobooks are sensitive information and underly the personality rights of the patients. We have written consent to use the material for this study, but we are not allowed to share this not blinded material publicly. Further Information can be obtained from the corresponding author on reasonable request.

Competing interests
The authors declare that they have no competing interests.

Funding
Not applicable of the International Society for Quality in Health Care. 2007;19(6):349-57. Figure 1 Areas of MiL: Categories mentioned by the Swiss representative sample compared terminally ill parent with young children