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1.
J Relig Health ; 2023 Dec 05.
Artigo em Inglês | MEDLINE | ID: mdl-38049708

RESUMO

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.

2.
Support Care Cancer ; 28(11): 5185-5193, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32060707

RESUMO

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.


Assuntos
Cuidadores/psicologia , Cuidados Paliativos/psicologia , Psicometria/normas , Adaptação Psicológica , Estudos Transversais , Análise Fatorial , Feminino , Serviços de Assistência Domiciliar , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Cuidados Paliativos/métodos , Estudos Prospectivos , Psicometria/métodos , Reprodutibilidade dos Testes , Inquéritos e Questionários
3.
Palliat Med ; 34(6): 806-816, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32348699

RESUMO

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.


Assuntos
Terapia Comportamental , Cuidadores , Depressão , Qualidade de Vida , Terapia Comportamental/métodos , Terapia Comportamental/normas , Terapia Comportamental/estatística & dados numéricos , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Depressão/terapia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Angústia Psicológica , Tempo
4.
BMC Palliat Care ; 15: 14, 2016 Feb 09.
Artigo em Inglês | MEDLINE | ID: mdl-26860949

RESUMO

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.


Assuntos
Causalidade , Efeitos Psicossociais da Doença , Transtornos Mentais/psicologia , Suicídio/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Pessoas com Deficiência/psicologia , Estudos Epidemiológicos , Feminino , Alemanha/epidemiologia , Humanos , Masculino , Transtornos Mentais/epidemiologia , Transtornos Mentais/mortalidade , Pessoa de Meia-Idade , Estudos Retrospectivos , Fatores de Risco , Suicídio/estatística & dados numéricos
5.
BMC Palliat Care ; 15(1): 88, 2016 Oct 24.
Artigo em Inglês | MEDLINE | ID: mdl-27776501

RESUMO

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.


Assuntos
Terapia Comportamental , Cuidadores/psicologia , Existencialismo , Aceitação pelo Paciente de Cuidados de Saúde , Seleção de Pacientes , Idoso , Estudos de Viabilidade , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Ensaios Clínicos Controlados Aleatórios como Assunto
6.
Palliat Support Care ; 14(2): 91-8, 2016 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-26072939

RESUMO

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.


Assuntos
Atitude Frente a Saúde , Cuidados Paliativos/psicologia , Psicometria/instrumentação , Qualidade de Vida/psicologia , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/normas , Estudantes de Medicina/psicologia
7.
Health Qual Life Outcomes ; 13: 160, 2015 Sep 29.
Artigo em Inglês | MEDLINE | ID: mdl-26416234

RESUMO

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.


Assuntos
Felicidade , Comportamentos Relacionados com a Saúde , Nível de Saúde , Satisfação Pessoal , Qualidade de Vida/psicologia , Valor da Vida , Adulto , Idoso de 80 Anos ou mais , Atitude Frente a Saúde , Feminino , Indicadores Básicos de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Fatores Socioeconômicos , Suíça/epidemiologia
8.
Palliat Support Care ; 13(3): 757-66, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-24905397

RESUMO

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.


Assuntos
Cuidadores/psicologia , Terapia Cognitivo-Comportamental/métodos , Assistência Médica/estatística & dados numéricos , Cuidados Paliativos/psicologia , Assistência ao Paciente/psicologia , Adulto , Idoso , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Inquéritos e Questionários
9.
Palliat Support Care ; 13(1): 11-8, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-23768947

RESUMO

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.


Assuntos
Cuidadores/psicologia , Atenção Plena/métodos , Cuidados Paliativos/psicologia , Assistência ao Paciente/psicologia , Psicoterapia/métodos , Adulto , Idoso , Luto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inventário de Personalidade , Inquéritos e Questionários
10.
Artigo em Alemão | MEDLINE | ID: mdl-26272670

RESUMO

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.


Assuntos
Diretivas Antecipadas/psicologia , Diretivas Antecipadas/estatística & dados numéricos , Atitude Frente a Morte , Cuidados Paliativos/estatística & dados numéricos , Preferência do Paciente/estatística & dados numéricos , Assistência Terminal/estatística & dados numéricos , Distribuição por Idade , Idoso , Idoso de 80 Anos ou mais , Atitude Frente a Saúde , Escolaridade , Feminino , Alemanha/epidemiologia , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/psicologia , Preferência do Paciente/psicologia , Autonomia Pessoal , Distribuição por Sexo , Assistência Terminal/psicologia
11.
Support Care Cancer ; 22(5): 1391-9, 2014 May.
Artigo em Inglês | MEDLINE | ID: mdl-24382677

RESUMO

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.


Assuntos
Luto , Cuidadores/psicologia , Cuidados Paliativos/psicologia , Doente Terminal/psicologia , Adaptação Psicológica , Adulto , Feminino , Alemanha , Pesar , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação Pessoal , Inventário de Personalidade , Qualidade de Vida
12.
Psychooncology ; 21(10): 1034-52, 2012 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-22232017

RESUMO

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.


Assuntos
Neoplasias/psicologia , Psicometria/instrumentação , Qualidade de Vida , Humanos , Cuidados Paliativos/psicologia , Reprodutibilidade dos Testes , Inquéritos e Questionários/normas , Valor da Vida
14.
Amyotroph Lateral Scler ; 11(5): 469-74, 2010 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-20235757

RESUMO

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.


Assuntos
Esclerose Lateral Amiotrófica/psicologia , Atitude Frente a Saúde , Satisfação Pessoal , Qualidade de Vida , Adolescente , Adulto , Idoso , Esclerose Lateral Amiotrófica/fisiopatologia , Esclerose Lateral Amiotrófica/terapia , Estudos Transversais , Feminino , Alemanha , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos , Adulto Jovem
15.
Support Care Cancer ; 18(7): 859-68, 2010 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-19701782

RESUMO

PURPOSE: The call for clinically relevant outcome criteria has been raised, as assessment of adequate quality of service providers is essential with increasing momentum in the development of palliative care in most European countries. The aim of this study is to investigate important dimensions and indicators for assessment and evaluation of palliative care from the perspective of multi-disciplinary German experts working over years in the field of palliative care. METHODS: A focus group, using the structured consensus method of the improved nominal group technique (INGT), with nine experts from different disciplines was conducted in Germany. RESULTS: An abundance of topics (16) were identified, pointing at the complexity of the issue. Main topics were: quality of life, needs assessments of patients and relatives, resource assessment, surveillance of decision-making processes, as well as spiritual well-being. The following properties were claimed as essential for outcome criteria sensitivity, without additional burden on patients, easy applicability, scientific validity, and helpful for communication within the team, ethical discussions as well as for quality management. CONCLUSIONS: The study identified topics considered important by experts in clinical practise. The discussions exposed the diversity of demands on outcome assessment put up by different stakeholder groups. This and the high number of relevant items show the complexity for the agreement on a unique set of outcome criteria. Further research considering other perspectives is needed.


Assuntos
Avaliação das Necessidades/organização & administração , Avaliação de Resultados em Cuidados de Saúde/métodos , Cuidados Paliativos/organização & administração , Indicadores de Qualidade em Assistência à Saúde/estatística & dados numéricos , Qualidade de Vida , Consenso , Grupos Focais , Alemanha , Humanos , Cuidados Paliativos/psicologia , Espiritualidade
16.
J Pain Symptom Manage ; 35(4): 356-64, 2008 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-18222629

RESUMO

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.


Assuntos
Modelos Psicológicos , Cuidados Paliativos/psicologia , Psicometria/métodos , Psicometria/normas , Valor da Vida , Atitude , Humanos , Satisfação Pessoal , Reprodutibilidade dos Testes
17.
Health Qual Life Outcomes ; 5: 59, 2007 Nov 22.
Artigo em Inglês | MEDLINE | ID: mdl-18034898

RESUMO

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.


Assuntos
Atitude , Satisfação Pessoal , Qualidade de Vida , Valor da Vida , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Atitude Frente a Saúde , Feminino , Alemanha , Humanos , Relações Interpessoais , Acontecimentos que Mudam a Vida , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Psicometria/métodos , Religião e Psicologia , Estudos de Amostragem , Apoio Social , Fatores Socioeconômicos , Espiritualidade , Inquéritos e Questionários
18.
J Cancer Res Clin Oncol ; 132(9): 557-60, 2006 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-16741728

RESUMO

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.


Assuntos
Doenças Cardiovasculares/epidemiologia , Neoplasias Embrionárias de Células Germinativas/epidemiologia , Neoplasias Testiculares/epidemiologia , Abandono do Uso de Tabaco , Adulto , Distribuição por Idade , Idoso , Estudos de Coortes , Seguimentos , Alemanha/epidemiologia , Humanos , Masculino , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Neoplasias Embrionárias de Células Germinativas/diagnóstico , Neoplasias Embrionárias de Células Germinativas/terapia , Medição de Risco , Comportamento de Redução do Risco , Inquéritos e Questionários , Taxa de Sobrevida , Sobreviventes , Neoplasias Testiculares/diagnóstico , Neoplasias Testiculares/terapia , Abandono do Uso de Tabaco/estatística & dados numéricos
19.
J Pain Symptom Manage ; 30(2): 154-9, 2005 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-16125030

RESUMO

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.


Assuntos
Esclerose Lateral Amiotrófica/psicologia , Neoplasias/psicologia , Cuidados Paliativos , Qualidade de Vida/psicologia , Autoimagem , Valores Sociais , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Esclerose Lateral Amiotrófica/terapia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
20.
J Pain Symptom Manage ; 30(1): 51-62, 2005 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-16043007

RESUMO

The Palliative Care Outcome Scale (POS) is a multidimensional instrument covering physical, psychosocial, spiritual, organizational, and practical concerns. This study validated the German version of the POS and used the tool in different palliative care settings in Germany and Austria. Patients and staff were asked to complete the POS three times and evaluate the questionnaire and the translation afterwards. One hundred eighteen patients (44 male, 74 female, mean age 63 years, all suffering from advanced cancer) completed the POS one time, 55 patients two times, and 36 patients three times. Spearman's rho was highly significant for pain, other symptoms, anxiety, and life worthwhile in the first two assessments. The third assessment showed significant correlations for pain, other symptoms, anxiety, and family anxiety. Seventy-seven of 87 patients answered questions regarding the scale and the translation. All questions other than "Over the past 3 days, have you felt good about yourself?" were understandable for patients. Almost half of the staff was undecided whether the tool was reflecting the patients' condition. In contrast, the majority of patients liked it. Thus, the German version of the POS is well accepted by patients and staff and appears to be valid, although there are some areas where the scale would benefit from expansion to more closely capture staff and patient concerns.


Assuntos
Avaliação de Resultados em Cuidados de Saúde/métodos , Manejo da Dor , Dor/epidemiologia , Cuidados Paliativos/estatística & dados numéricos , Qualidade de Vida , Inquéritos e Questionários , Áustria/epidemiologia , Estudos de Viabilidade , Feminino , Alemanha/epidemiologia , Humanos , Masculino , Pessoa de Meia-Idade , Dor/diagnóstico , Projetos Piloto
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