Meaning in Life in Late-Stage Parkinson's Disease: Results from the Care of Late-Stage Parkinsonism Study (CLaSP) in Six European Countries.

The Care of Late-Stage Parkinsonism (CLaSP) study is a longitudinal, multicentre, prospective cohort study to assess the needs and provision of care for people with late-stage Parkinson's disease and their caregivers in six European countries. As a cross-sectional study within the CLaSP study, 509 people with Parkinson's disease completed the "Schedule-for-Meaning-in-Life-Evaluation" (SMiLE) questionnaire. We compared the results to those of a representative sample of healthy participants (n = 856). People with late-stage Parkinson's disease reported family, partnership and spirituality as the greatest areas of importance. Overall, they had lower SMiLE indices compared to healthy participants. People with late-stage Parkinson's disease rated the importance of core meaning in life areas (namely family, social relations and health) as significantly lower than the representative cohort and they also rated satisfaction as significantly lower in most areas. In conclusion, people with late-stage Parkinson's disease do have areas where they can find meaning, such as family, partnership and spirituality. However, they indicate a lack of fulfilment of their individual MiL, reflected by low satisfaction rates in the majority of meaning in life categories. The need for spiritual support for people with Parkinson's disease indicates the important role of chaplains to help people with Parkinson's disease maintain meaning in life.

How short is too short? A randomised controlled trial evaluating short-term existential behavioural therapy for informal caregivers of palliative patients.

BACKGROUND: Informal caregivers of palliative patients show higher levels of depression and distress compared with the general population. Fegg's (2013) existential behavioural therapy was shortened to two individual 1-h sessions (short-term existential behavioural therapy). AIM: Testing the effectiveness of sEBT on psychological symptoms of informal caregivers in comparison with active control. DESIGN: Randomised controlled trial. SETTING/PARTICIPANTS: Informal caregivers of palliative in-patients. METHODS: The primary outcome was depression; secondary outcomes were anxiety, subjective distress and minor mental disorders, positive and negative affect, satisfaction with life, quality of life and direct health care costs. General linear mixed models allow several measurements per participant and change over time. Reasons for declining the intervention were investigated by Rosenstock's Health Belief Model. RESULTS: Overall inclusion rate was 41.0%. Data of 157 caregivers were available (63.1% females; mean age: 54.6 years, standard deviation (SD): 14.1); 127 participants were included in the main analysis. Participation in sEBT or active control was not significantly associated with post-treatment depression. Outcomes showed prevailingly significant association with time of investigation. Self-efficacy, scepticism of benefit of the intervention, belief of better coping alone and support by family and friends were significant factors in declining participation in the randomised controlled trial. CONCLUSION: Inclusion rate was tripled compared with a previously evaluated longer EBT group intervention. By shortening the intervention, inclusion rate was traded for effectiveness and the intervention could not impact caregivers' psychological state. Early integration of sEBT and combination of individual and group setting and further study of the optimal length for caregiver interventions are suggested.

Validation of two short versions of the Zarit Burden Interview in the palliative care setting: a questionnaire to assess the burden of informal caregivers.

PURPOSE: Several validated outcome measures, among them the Zarit Burden Interview (ZBI), are valid for measuring caregiver burden in advanced cancer and dementia. However, they have not been validated for a wider palliative care (PC) setting with non-cancer disease. The purpose was to validate ZBI-1 (ultra-short version and proxy rating) and ZBI-7 short versions for PC. METHODS: In a prospective, cross-sectional study with informal caregivers of patients in inpatient (PC unit, hospital palliative support team) and outpatient (home care team) PC settings of a large university hospital, content validity and acceptability of the ZBI and its structural validity (via confirmatory factor analysis (CFA) and Rasch analysis) were tested. Reliability assessment used internal consistency and inter-rater reliability and construct validity used known-group comparisons and a priori hypotheses on correlations with Brief Symptom Inventory, Short Form-12, and Distress Thermometer. RESULTS: Eighty-four participants (63.1% women; mean age 59.8, SD 14.4) were included. Structural validity assessment confirmed the unidimensional structure of ZBI-7 both in CFA and Rasch analysis. The item on overall burden was the best item for the ultra-short version ZBI-1. Higher burden was recorded for women and those with poorer physical health. Internal consistency was good (Cronbach's α = 0.83). Inter-rater reliability was moderate as proxy ratings estimated caregivers' burden higher than self-ratings (average measures ICC = 0.51; CI = 0.23-.69; p = 0.001). CONCLUSION: The ZBI-7 is a valid instrument for measuring caregiver burden in PC. The ultra-short ZBI-1 can be used as a quick and proxy assessment, with the caveat of overestimating burden.

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.

Physical compared to mental diseases as reasons for committing suicide: a retrospective study.

BACKGROUND: Several studies investigated the relationship between mental disorders and suicidal ideation. However, little is known about physical illnesses being the major trigger for committed suicides. It is necessary to understand these risk factors to be able to meet the needs of patients in a palliative care setting. METHODS: Suicide, medical and police notes were retrospectively analysed from all autopsies conducted in 2009-11 at the University of Munich, Germany. Documented reasons for suicide were classified into a "physical disease" (PD) or "mental disease" (MD) group and compared with respect to their sociodemographic characteristics and autopsy outcomes. RESULTS: Of all 1069 cases, 18.9% gave a PD as reason for committing suicide (MD, 32.7%). Those indicating PD were older than MD (68.8 vs. 48.7 years; p < 0.001) with more men being in this group (72.8% vs. 59.1%; p=0.002). In PD, 30.7% suffered from cancer, 28.7% from chronic pain and 12.4% from lung disease. 38.8% of MD and 12.4% of PD had previous suicide attempts. CONCLUSIONS: In palliative care, it is necessary to screen patients on a regular basis for suicidal ideation, especially those with previous suicide attempts.

Individual meaning in life assessed with the Schedule for Meaning in Life Evaluation: toward a circumplex meaning model.

OBJECTIVE: The experience of "meaning in life" (MiL) is a major aspect of life satisfaction and psychological well-being. To assess this highly individual construct, idiographic measures with open-response formats have been developed. However, it can be challenging to categorize these individual experiences for interindividual comparisons. Our study aimed to derive MiL categories from individual listings and develop an integrative MiL model. METHOD: University students were asked to rate 58 MiL providing aspects recently found in a nationwide study using the Schedule for Meaning in Life Evaluation (SMiLE), an MiL instrument allowing for open responses. Pearson's correlations and factor analyses were used to test the unidimensionality of subsequently derived higher-order MiL categories. Multidimensional scaling, cluster analysis, and factor analysis were performed to further analyze a latent MiL structure. RESULTS: A total of 340 students participated in the study. Some 11 unidimensional categories consisting of 34 meaning-providing aspects were summarized into a circumplex model with four MiL domains: leisure/health, work/finances, culture/spirituality, and relationships (family, partnership, social relations). SIGNIFICANCE OF RESULTS: This model seems to incorporate a major portion of individual respondent-generated MiL listings. It may be useful for future idiographic MiL studies to help organize individual experiences of MiL and allow for higher-level interindividual comparisons. Further studies including different samples are necessary to confirm this model or derive other MiL domains, for example, in palliative care patients or patients who are confronted with a loss of meaning.

Meaning in life and perceived quality of life in Switzerland: results of a representative survey in the German, French and Italian regions.

BACKGROUND: The concept of meaning in life (MIL) has become a central one in recent years, particularly in psycho-oncology and palliative care. The Schedule for Meaning in Life Evaluation (SMILE) has been developed to allow individuals to choose the life areas that they consider to be important for their own MIL. This approach relates to the "World Health Organisation" definition of quality of life (QOL) as an individual's perception of his own position. The aims of this study were (i) to assess MIL in a representative sample of the Swiss population according to the three linguistic regions and (ii) to evaluate whether MIL constitutes a significant determinant of the perceived QOL. METHODS: A telephone survey of the Swiss population, performed by a professional survey company, was conducted between November and December 2013. The interview included the SMILE, perceived QOL (0-10) and health status (1-5), and various sociodemographic variables. In the SMILE, an index of weighting (IOW, 20-100), an index of satisfaction (IOS, 0-100), and a total SMILE index (IOWS, 0-100) are calculated from the areas mentioned by the participants as providing MIL. RESULTS: Among the 6671 telephonic contacts realized, 1015 (15%) participants completed the survey: 405 French, 400 German and 210 Italian participants. "Family" (80.2%), "occupation/work" (51%), and "social relations" (43.3%) were the most cited MIL-relevant categories. Italian participants listed "health" more frequently than German and French participants (50.4% vs 31.5% and 24.8% respectively, χ(2) = 12.229, p = .002). Age, gender, education, employment, and marital status significantly influenced either the MIL scores or the MIL-relevant categories. Linear regression analyses indicate that 24.3% of the QOL variance (p = .000) is explained by health status (B = .609, IC = .490-.728, p = .000), MIL (B = .034, IC = .028-.041, p = .000) and socioeconomic status (F = 11.01, p = .000). CONCLUSION: The major finding of our analysis highlights the positive and significant influence of MIL on the perceived QOL in a representative sample of a general, multilingual and multicultural population. This result indicates that the existential dimension is not only determinant for QOL in some critical life events, as shown e.g. in psycho-oncology and palliative care, but also in everyday life.

[What influences end-of-life decisions? Results of a representative German survey]. / Was beeinflusst Entscheidungen am Lebensende? Ergebnisse einer repräsentativen Umfrage in Deutschland.

BACKGROUND: Because of demographic changes of an aging society, palliative care is becoming increasingly important. It is therefore necessary to evaluate preferences at the end of life at an early stage to meet the needs and requests of future patients. OBJECTIVES: The aim of this study was to find out preferences in a theoretical scenario ("If you developed a serious medical condition such as cancer and you had less than a year to live…") regarding the desired involvement in decision-making at the end of life and the preferred place of death. MATERIALS AND METHODS: As part of the international PRISMA project, a representative telephone survey was carried out in Germany. RESULTS: A total of 1,363 Germans took part in the survey (response rate 29.0 %, 47.1 ± 15.7 years, 42 % male). 90.8 % wanted to make their own decisions with regard to end-of-life care, which was most important for people with higher education. 83.3 % wanted to predetermine decisions by means of an advance directive in case they are no longer able to make them at the time. This was again more important for individuals with higher education and for older subjects (≥ 65 years). The preferred place of death was their own home (63.3 %), and the least preferred place for death was in hospital in 48.2 %. In particular, women did not want to die in a hospital. CONCLUSION: These results should be considered when planning health care structures to meet the wishes of people at the end of their life, in particular to strengthen the importance of patient provision and the desire for their own home to be the preferred place to die.

What Gives Meaning in Life to Patients With Advanced Cancer? A Comparison Between Spanish, German, and Swiss Patients.

CONTEXT: Meaning in life (MiL) is a construct that varies across individuals, situations, cultures, and countries, and protects against emotional distress at the end of life. OBJECTIVES: To examine MiL in inpatients with advanced cancer from Barcelona, Spain, and to compare the findings with those obtained in German and Swiss samples. METHODS: This was a cross-sectional study in which the Schedule for Meaning in Life Evaluation (SMiLE) was administered. The SMiLE asks respondents to list individual areas that give meaning in their lives and then to rate their current level of importance and satisfaction with the listed areas. RESULTS: A total of 101 inpatients completed the SMiLE. The Index of Satisfaction was 76.8 ± 21.1, the Index of Weighting was 88.0 ± 13.0, and the Index of Weighted Satisfaction was 76.9 ± 20.7. Family, partnership, well-being, and friends were the four areas listed by the largest proportion of Spanish patients. Compared with the German sample, Spanish patients were more likely to list well-being (P < 0.01) and pleasure (P < 0.05) and less likely to list animals/nature, leisure time, and finances (P < 0.01). With respect to their Swiss counterparts, Spanish patients were more likely to list health (P < 0.01) and less likely to list friends, leisure time, animals/nature, and finances (P < 0.01). CONCLUSION: Differences were identified in the areas of MiL listed by the participants according to country of origin. Compared with their German and Swiss counterparts, the Spanish patients listed more areas involving interpersonal relationships. Interpersonal relationships, at both the family and wider social level, are reported to be the areas that give the greatest MiL to these patients. These aspects, therefore, should be considered when drawing up care plans designed to help patients achieve the maximum possible comfort and quality of life.

Mindfulness in informal caregivers of palliative patients.

OBJECTIVES: Mindfulness is a concept of growing impact on psychotherapy and has been shown to be effective for stress reduction and to improve psychological well-being. Existential Behavioural Therapy (EBT) was developed to support relatives of palliative care (PC) patients to cope with their situation during caregiving and bereavement. Mindfulness training was a core element of the intervention. We investigated the relationship between mindfulness, mental distress, and psychological well-being in informal caregivers, and evaluated if the effects of the intervention were mediated by mindfulness. METHODS: Relatives of PC inpatients took part in a randomized-controlled EBT trial and completed the Cognitive and Affective Mindfulness Scale-Revised, items from the Five Facets of Mindfulness as well as the Brief Symptom Inventory, the Satisfaction with Life Scale, the WHOQOL-BREF, a numerical rating scale on quality of life (range 0-10), and the Schedule for Meaning in Life Evaluation at pre- and post-intervention, and a 3- and 12-months follow-up. RESULTS: One-hundred-and-thirty carers were included, most of them (71.6%) recently being bereaved at the beginning of the intervention. High correlations between mindfulness and mental distress (r = -0.51, p < 0.001) as well as life satisfaction (r = 0.52, p < 0.001) were found. Mindfulness was a significant predictor of improvement in psychological distress, meaning in life and quality of life three months after the intervention. The EBT effects were partly mediated by mindfulness. SIGNIFICANCE OF RESULTS: Mindfulness seems to be a promising concept in supporting informal caregivers of PC patients. Further research is needed to identify the required format and intensity of mindfulness practice necessary for improvement.

Existential behavioral therapy for informal caregivers of palliative patients: barriers and promoters of support utilization.

OBJECTIVE: Several interventions have been developed during recent years to support informal caregivers of palliative patients. However, these trials reported low enrollment rates. Employing a newly developed group intervention, existential behavioral therapy (EBT), one study reported that only 13.6% of approached informal caregivers participated. The purpose of our present study was to identify the reasons for this low enrollment rate in order to improve future support designs. METHOD: All participants in the EBT trial (intervention vs. standard-care control group) as well as those who declined participation during a 4-month recruitment period were studied prospectively over 12 months. Andersen's behavioral model of healthcare service use was employed to identify group differences between acceptors and decliners: predisposing (age, gender, education, family status, relationship), enabling (social support, distance to hospital, caring vs. bereaved), and need factors (psychological distress, quality of life) were evaluated in a binary-logistic model. RESULTS: Some 94 decliners were compared to 160 EBT participants (n = 81 intervention, n = 79 control). Caregivers who took part were significantly more distressed and suffered from a lower quality of life compared to decliners. Not only these need factors but also predisposing (age <55 years) and enabling (use of social/professional support, familiarity with caregiving institution) factors were associated with EBT utilization. At the 12-month follow-up, EBT intervention participants reported greater quality of life improvements than decliners or controls (p = 0.05). While all groups had mean anxiety scores below the cutoff at 12-month follow-up, decliners showed better improvement in anxiety compared to EBT participants (intervention p = 0.04, controls p = 0.03). SIGNIFICANCE OF RESULTS: On average, decliners are less burdened: they may be more resilient, may have better coping strategies, or already have a sufficient support network in place. Screening caregivers with regard to their experienced quality of life and targeting those in need, especially younger caregivers with low levels of quality of life, may help to allocate resources more appropriately.

Meaning in life experience at the end of life: validation of the Hindi version of the Schedule for Meaning in Life Evaluation and a cross-cultural comparison between Indian and German palliative care patients.

CONTEXT: The experience of Meaning in Life (MiL) is a major protective factor against feelings of hopelessness and wishes for hastened death in palliative care (PC) patients. However, most instruments for MiL assessment have been developed only in Western countries so far. Little is known about MiL experience in Asian PC patients. OBJECTIVES: This study aimed to provide a Hindi version of the Schedule for Meaning in Life Evaluation (SMiLE), test its feasibility and validity in Indian PC patients, and compare the results with previous studies in Germany. METHODS: Indian PC patients in a hospice for the destitute were eligible to participate in this cross-sectional study. In the SMiLE instrument, respondents individually listed MiL-giving areas before rating their satisfaction with and importance of these areas. Overall indices of satisfaction (IoS, range 0-100), weighting (IoW, range 0-100), and weighted satisfaction (IoWS, range 0-100) were calculated. RESULTS: A Hindi forward-backward translation of the SMiLE was made. Two hundred fifty-eight Indian PC patients took part in the study (response rate 93.5%). Convergent validity of the SMiLE was found with the World Health Organization Quality of Life-Brief version (r = 0.17; P = 0.008) and the Idler Index of Religiosity (public religiousness: r = 0.25, P < 0.001 and private religiousness: r = 0.29, P < 0.001). Indian PC patients' IoW was 65.8 ± 22.1, IoS 68.6 ± 17.4, and IoWS 70.2 ± 17.0. In multivariate analyses of covariance, they differed significantly from German PC patients only in IoW (IoW: 84.8 ± 11.5, P < 0.001; IoS: 70.2 ± 19.7; IoWS: 72.0 ± 19.4). Compared with Germans, Indians more often listed spirituality (P < 0.001) and social commitment (P < 0.001) and less often social relations (P = 0.008). CONCLUSION: Preliminary results indicate good feasibility and validity of the Hindi version of the SMiLE. MiL experience also seems to be a coping resource for Indian PC patients.

Does the working environment influence health care professionals' values, meaning in life and religiousness? Palliative care units compared with maternity wards.

CONTEXT: Increased altruism, self-transcendence, and quests for meaning in life (MiL) have been found in palliative care (PC) patients and their families who experience the finiteness of life. Similar changes were observed in healthy subjects who were experimentally confronted with their mortality. OBJECTIVES: The study investigated how daily experiences of the transitoriness of life influence PC health care professionals' (HCPs) values, MiL, and religiousness. METHODS: In a cross-sectional study, the Schwartz Value Survey, the Schedule for Meaning in Life Evaluation, and the Idler Index of Religiosity were used to investigate personal values, MiL, and private religiousness. HCPs working in PC (confronted with death) were compared with a control group of HCPs working at maternity wards (MWs) using multivariate models. Differences were considered to be statistically significant at P < 0.05. RESULTS: Seventy PC- and 70 MW-HCPs took part in the study (response rate 74.0%). No differences between the groups were found in overall MiL satisfaction scores. PC-HCPs were significantly more religious than MW-HCPs; they listed spirituality and nature experience more often as areas in which they experience MiL. Furthermore, hedonism was more important for PC-HCPs, and they had higher scores in openness-to-change values (stimulation and self-direction). MW-HCPs were more likely to list family as a MiL area. They assigned more importance to health and scored higher in conservation values (conformity and security). Duration of professional experience did not influence these results. CONCLUSION: Basic differences in values, MiL, and religiousness between PC-HCPs and MW-HCPs might have influenced the choice of working environment because no effect of job duration was observed. Longitudinal research is needed to confirm this hypothesis.

Experience of meaning in life in bereaved informal caregivers of palliative care patients.

PURPOSE: Providing care for terminally ill family members places an enormous burden on informal caregivers. Meaning in life (MiL) may be a protective factor, but is jeopardised in caregiving and bereavement. This study evaluates the following questions: To what extent do bereaved informal caregivers of palliative care (PC) patients experience meaning in their lives? What differences emerge in carers compared to the general German population? How does MiL relate to well-being in former caregivers? METHODS: Eighty-four bereaved PC caregivers completed the Schedule for Meaning in Life Evaluation, the Brief Symptom Inventory, the WHOQOL-BREF, a single-item numerical rating scale of quality of life, and the Satisfaction with Life Scale. The experience of MiL of bereaved caregivers was compared to a representative population sample (n=977). RESULTS: The overall MiL fulfillment of bereaved caregivers (69 % female, age 55.5 ± 12.9 years) was significantly lower than in the general population (68.5 ± 19.2 vs. 83.3 ± 14, p<.001), as was the overall importance ascribed to their meaning framework (76.6 ± 13.6 vs. 85.6 ± 12.3, p< .001). PC caregivers are far more likely to list friends, leisure, nature/animals, and altruism. Higher MiL was correlated with better life satisfaction and quality of life. CONCLUSION: Coping with the loss of a loved one is associated with changes in MiL framework and considerably impairs a carer's experience of MiL fulfillment. Individual MiL is associated with well-being in PC caregivers during early bereavement. Specific interventions for carers targeted at meaning reconstruction during palliative care and bereavement are needed to help individuals regain a sense of meaning and purpose.

Meaning in life in patients with progressive supranuclear palsy.

This exploratory study investigated meaning in life (MiL) in patients with progressive supranuclear palsy (PSP). In the "Schedule for Meaning in Life Evaluation" (SMiLE), respondents list individual MiL areas before rating their current satisfaction and importance with them (index of weighting [IoW], index of satisfaction [IoS], and index of weighted satisfaction [IoWS], range 0-100). A total of 38 patients with PSP completed the SMiLE (IoS: 68.6 ± 25.6, IoW: 79.6 ± 12.6, and IoWS: 69.2 ± 26.1). A representative sample of healthy participants (n = 977) scored significantly higher in the IoS (82.8 ± 14.7, P < .001), the IoW (85.6 ± 12.3, P = .006), and the IoWS (83.3 ± 14.8, P < .001). Compared to healthy individuals, patients with PSP were less likely to list health (P = .001) and more likely to list partner (P = .04), leisure (P = .01), home/garden (P = .01), and pleasure (P = .02). Patients with PSP seem to focus on supportive relationships and leisure, while the decreasing health status is becoming less important to them.

Determinants of the effect of existential behavioral therapy for bereaved partners: a qualitative study.

BACKGROUND: Informal caregivers of palliative patients took part in existential behavioral therapy (EBT), a group intervention comprising mindfulness exercises to reduce psychological distress and improve quality of life. OBJECTIVES: This study examined what the participants perceived as helpful to cope with their loss during the first year of bereavement, particularly with regard to the EBT intervention. DESIGN: Sixteen problem-centered, semi-structured interviews were evaluated with content analysis. RESULTS: Two main categories were found: social support and self-regulation. Social support includes sense of belonging as well as emotional, cognitive, and practical help experienced from others. Mindfulness and acceptance, a clear focus on the positive, and orientation toward the future were helpful strategies of self-regulation; these were also part of the EBT intervention. Mindfulness was understood as permitting emotions and acceptance of one's inner processes, even if they were not pleasant, and was found to be helpful to stop ruminative thinking. CONCLUSIONS: The categories considered as being helpful parallel core elements of EBT and recent grief theories. The intervention was found to be supportive and met the needs of the participants. The interviewees appreciated the continuity of EBT support from palliative care into bereavement.

Systematic review of meaning in life assessment instruments.

BACKGROUND: The construct of "meaning in life" (MiL) has raised the interest of clinicians working in psycho-oncology and end-of-life care. It has become a topic of scientific investigation where diverse assessment approaches have been applied. AIMS: We present a comprehensive systematic review of existing MiL assessment instruments. METHODS: Electronic searches of articles published in English peer-reviewed journals were performed in Psycinfo, Medline, Embase and Cinahl. Instruments are appraised with regard to ten measurement properties. RESULTS: In total, 59 nomothetic and idiographic MiL instruments were identified. Most instruments were developed in North America and meet basic psychometric criteria. They assess presence of and search for MiL, crisis and sources of MiL, meaning making, meaningful activity, MiL in the context of illness, breadth, depth, and other structural indicators. These aspects are largely consistent with existing MiL definitions. Nine out of 59 instruments included cancer populations in test development. CONCLUSIONS: This overview of available instruments underscores the complexity of the construct and might assist researchers to select an appropriate instrument for their research needs. Finally, it points to the need for more integrative theorizing and research on MiL.

Meaning in life in palliative care patients.

CONTEXT: 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. OBJECTIVES: The aim of this study was to compare MiL in palliative care (PC) patients with a representative sample of the German population. METHODS: In this cross-sectional study, all PC patients treated in the PC inpatient unit and through the PC consult service at Ludwig-Maximilians-University Hospital, Munich, from May 2005 to July 2007 were eligible to participate. Patients were interviewed by a doctoral student, psychologist, or physician, all previously trained to administer the Schedule for Meaning in Life Evaluation (SMiLE) in a standardized way. In the SMiLE, respondents first list individual areas that provide meaning to their life before rating their current level of importance and satisfaction with each area. Overall indices of weighting (IoW, range 20-100), satisfaction (IoS, range 0-100), and weighted satisfaction (IoWS, range 0-100) are calculated. RESULTS: One hundred PC patients completed the SMiLE: the IoS was 70.2 ± 19.7, the IoW was 84.7 ± 11.5, and the IoWS was 72.0 ± 19.4. The representative sample (n=977) scored significantly higher in the IoS (82.8 ± 14.7) and IoWS (83.3 ± 14.8) but not in the IoW (85.6 ± 12.3). Compared with healthy individuals, PC patients are more likely to list partner, friends, leisure, spirituality, well-being, nature/animals, and pleasure as meaningful areas. Examining the satisfaction ratings, it is noteworthy that PC patients' satisfaction scores are fairly high (and not lower than their healthy counterparts') in a number of domains: family, partner, home/garden, spirituality, and finances. On the other hand, they score significantly lower in nature/animals, leisure, friends, well-being, altruism, work, pleasure, and health. CONCLUSION: These findings underscore the potential of the SMiLE for identifying areas that are particularly important to individuals, and that can be targeted by the PC team to improve overall life satisfaction at the end of life.

Meaning in life in patients with amyotrophic lateral sclerosis.

The construct 'meaning in life' (MiL) has become increasingly important in palliative care. Several meaning-focused interventions have been developed recently. The aim of this study was to investigate MiL in patients with amyotrophic lateral sclerosis (ALS) and compare the findings with a representative sample of the German population. In the newly developed 'Schedule for Meaning in Life Evaluation' (SMiLE), respondents first list individual areas that provide meaning to their life before rating their current level of importance and satisfaction with each area. Overall indices of weighting (IoW, range 20-100), satisfaction (IoS, range 0-100), and weighted satisfaction (IoWS, range 0-100) are calculated. Results of our study showed that 46 ALS patients completed the SMiLE: the IoS was 74.7 ± 20.2, the IoW 88.1 ± 10.1, and the IoWS 76.3 ± 20.5. Satisfaction with MiL was negatively associated with disease duration and degree of functional impairment. After adjustment for age, sex, and marital status, the representative sample (n = 977) scored significantly higher in the IoS (82.8 ± 14.7) and the IoWS (83.3 ± 14.8). Compared to the general population, ALS patients list more meaning-relevant areas, are more likely to list partner, and less likely to list health. Thus, response shift seems to be a central coping mechanism in ALS patients. Regarding their major MiL areas, they shift their focus away from decreasing health status and towards supportive relationships.