TY - JOUR
T1 - Meaning in life in patients with amyotrophic lateral sclerosis
AU - Fegg, Martin Johannes
AU - Kögler, Monika
AU - Brandstätter, Monika
AU - Jox, Ralf
AU - Anneser, Johanna
AU - Haarmann-Doetkotte, Sigrid
AU - Wasner, Maria
AU - Borasio, Gian Domenico
N1 - Funding Information:
The authors are grateful to Helmut K ü chenhoff, Ludwig-Maximilians University Munich for his advice and support. This study was supported by a research grant of the Friedrich Baur Foundation of the Medical Department, Ludwig-Maximilians University Munich, Germany.
PY - 2010/10
Y1 - 2010/10
N2 - 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 20100), satisfaction (IoS, range 0100), and weighted satisfaction (IoWS, range 0100) 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.
AB - 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 20100), satisfaction (IoS, range 0100), and weighted satisfaction (IoWS, range 0100) 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.
KW - Amyotrophic lateral sclerosis
KW - Coping
KW - Meaning in life
KW - Motor neuron disease
KW - Palliative care
KW - Schedule for Meaning in Life Evaluation
UR - http://www.scopus.com/inward/record.url?scp=77956638379&partnerID=8YFLogxK
U2 - 10.3109/17482961003692604
DO - 10.3109/17482961003692604
M3 - Article
C2 - 20235757
AN - SCOPUS:77956638379
SN - 1748-2968
VL - 11
SP - 469
EP - 474
JO - Amyotrophic Lateral Sclerosis
JF - Amyotrophic Lateral Sclerosis
IS - 5
ER -