The feasibility and acceptability of short-term, individual existential behavioural therapy for informal caregivers of patients recruited in a specialist palliative care unit.

BACKGROUND: Existential behavioural therapy (EBT) is a recently developed intervention to support informal caregivers of patients in a specialist palliative care unit and was initially established as a six-session group programme. This pilot study aimed to test the feasibility and acceptability of an adapted short-term, individual approach of EBT in preparation for a randomized controlled trial (RCT). METHODS: The study was conducted in a prospective, mixed methods design including four quantitiative assessments with embedded qualitative interviews at one assessment. The intervention offered two one-hour therapeutic sessions focusing on (1) mindfulness and (2) existential meaning-in-life as a source of strength provided by a trained psychotherapist. To test the feasibility of the intervention, doubling of the participation rate, compared to the previous group study (13,6 %) as well as an attrition rate of less than 30 % were set as thresholds. To test the acceptability of the intervention, self-rated usefulness of individual aspects of the intervention and the frequency of implementing therapeutic elements by the carers were set as criteria. Acceptability testing also included the number of participants who completed both sessions, where we expected more than 75 % as a criterion for acceptability. Return rates of quantitative questionnaires were set as criteria for the feasibility of data collection (<33 % loss expected within the study period). Qualitative interviews were used to collect additional data on feasibililty and acceptability and to explore potential harms and benefits of the intervention. RESULTS: 44/102 (43,1 %) of eligible informal caregivers agreed to participate in the study. Due to attrition of 13 caregivers (attrition rate: 29,5 %), 31 caregivers were included in the trial. Self-rated usefulness showed sufficiant results for all but one individual aspect. Frequency of implementing therapeutic elements showed wide inter-item as well as inter-participant ranges and decreased over the study period. All participants completed both sessions. Return rates of the questionnaires were within the expected range. According to the interviews, the intervention was associated with several participant-identified benefits. No severe adverse effects were observed. CONCLUSIONS: Findings suggest that the short-term, individual EBT proved feasible and mostly acceptable.

The Schedule for Meaning in Life Evaluation (SMiLE): validation of a new instrument for meaning-in-life research.

The Schedule for Meaning in Life Evaluation (SMiLE) is a respondent-generated instrument for the assessment of individual meaning in life (MiL). In the SMiLE, the respondents list three to seven areas that provide meaning to their lives before rating the current level of importance and satisfaction of each area. Indices of total weighting (IoW; range, 20-100), total satisfaction (IoS; range, 0-100), and total weighted satisfaction (IoWS; range, 0-100) are calculated. The objective of this study was to assess the feasibility, acceptability, and psychometric properties of this newly developed instrument in its German and English versions. A total of 599 students of the Ludwig-Maximilians University, Munich and the Royal College of Surgeons, Dublin, took part in the study (response rate, 95.4%). The mean IoW was 85.7+/-9.4, the mean IoS was 76.7+/-14.3, and the mean IoWS was 77.7+/-14.2. The instrument was neither distressing (1.3+/-1.9) nor time-consuming (1.9+/-1.9), as assessed by numeric rating scales (range, 0-10). Test-retest reliability of the IoWS was r=0.72 (P<0.001); 85.6% of all areas were listed again after a test-retest period of seven days. Convergent validity was demonstrated with the Purpose in Life test (r=0.48, P<0.001), the Self-Transcendence Scale (r=0.34, P<0.001), and a general numeric rating scale on MiL (r=0.53, P<0.001). There was no correlation of the SMiLE with the Idler Index of Religiosity. Preliminary data indicate good feasibility and acceptability of the SMiLE in palliative care patients. The psychometrics of the SMiLE are reported according to the recommendations of the Scientific Advisory Committee of the Medical Outcomes Trust.

Meaning in life in the Federal Republic of Germany: results of a representative survey with the Schedule for Meaning in Life Evaluation (SMiLE).

BACKGROUND: The construct "meaning-in-life" (MiL) has recently raised the interest of clinicians working in psycho-oncology and end-of-life care and has become a topic of scientific investigation. Difficulties regarding the measurement of MiL are related to the various theoretical and conceptual approaches and its inter-individual variability. Therefore the "Schedule for Meaning in Life Evaluation" (SMiLE), an individualized instrument for the assessment of MiL, was developed. The aim of this study was to evaluate MiL in a representative sample of the German population. METHODS: In the SMiLE, the respondents first indicate a minimum of three and maximum of seven areas which provide meaning to their life before rating their current level of importance and satisfaction of each area. Indices of total weighting (IoW, range 20-100), total satisfaction (IoS, range 0-100), and total weighted satisfaction (IoWS, range 0-100) are calculated. RESULTS: In July 2005, 1,004 Germans were randomly selected and interviewed (inclusion rate, 85.3%). 3,521 areas of MiL were listed and assigned to 13 a-posteriori categories. The mean IoS was 81.9 +/- 15.1, the mean IoW was 84.6 +/- 11.9, and the mean IoWS was 82.9 +/- 14.8. In youth (16-19 y/o), "friends" were most important for MiL, in young adulthood (20-29 y/o) "partnership", in middle adulthood (30-39 y/o) "work", during retirement (60-69 y/o) "health" and "altruism", and in advanced age (70 y/o and more) "spirituality/religion" and "nature experience/animals". CONCLUSION: This study is a first nationwide survey on individual MiL in a randomly selected, representative sample. The MiL areas of the age stages seem to correspond with Erikson's stages of psychosocial development.

Smoking cessation in long-term survivors of germ cell tumour.

PURPOSE: Long-term survivors of germ cell tumours (GCT) are at increased risk of cardiovascular morbidity. We investigated the use of tobacco in patients after therapy for GCT. METHODS: Four hundred and seventy-four patients treated between 1979 and 2000 at the University of Munich were asked to complete a self-report questionnaire on psychosocial dimensions which included items on tobacco smoking before and after treatment of GCT. RESULTS: Three hundred and forty-one patients (72%) returned a completed questionnaire. The median follow-up period was 9.6 years. 160 of 341 patients (47%) reported to smoke at the time of GCT diagnosis. Of those, 134 (84%) had changed their smoking behavior with 32 patients (20%) having reduced, 56 (35%) having intermittently quitted and 46 (29%) having definitively quitted smoking. Patients reduced or stopped smoking irrespective of tumour histology, tumour stage, whether they had received chemotherapy or not, and irrespective of the number of chemotherapy courses applied. CONCLUSION: Most patients changed their habit of tobacco smoking after diagnosis and treatment of GCT but only a minority of patients are sustained quitters. Patients with GCT should be strongly encouraged to stop smoking or to participate in smoking cessation programs.

Personal values and individual quality of life in palliative care patients.

To evaluate the relationship between personal values and individual quality of life (iQoL) in palliative care patients, 75 patients with advanced cancer or amyotrophic lateral sclerosis (ALS) were asked to complete a self-report questionnaire concerning personal values and a semi-structured interview on their iQoL. Sixty-four patients took part in the study (56% cancer, 44% ALS). The most important personal values were benevolence, self-direction, and universalism, whereas power, achievement, and stimulation were the least important. Self-transcendence values were higher than self-enhancement values in all patients. Compared with healthy adults, palliative care patients scored significantly higher in benevolence and lower in self-enhancement values. Conservation values (security, conformity, tradition) were correlated with higher levels of iQoL (P=0.03). There were no significant differences between ALS and cancer patients. These data suggest that conservation values protect the patients' iQoL in the palliative care situation. The observed shift towards self-transcendence values may be related to coping processes of terminally ill patients. The relationship between self-transcendence values and iQoL should be further investigated.