Christopher Kofahl

Disabled older people's use of health and social care services and their unmet care needs in six European countries

BACKGROUND The national health and social care systems in Europe remain poorly integrated with regard to the care needs of older persons. The present study examined the range of health and social care services used by older people and their unmet care needs, across six European countries. METHODS Family carers of older people were recruited in six countries via a standard protocol. Those providing care for disabled older people (n = 2629) provided data on the older persons service use over a 6-month period, and their current unmet care needs. An inventory of 21 services common to all six countries was developed. Analyses considered the relationship between older peoples service use and unmet care needs across countries. RESULTS Older people in Greece, Italy and Poland used mostly health-oriented services, used fewer services overall and also demonstrated a higher level of unmet care needs when compared with the other countries. Older people in the United Kingdom, Germany and Sweden used a more balanced profile of socio-medical services. A negative relationship was found between the number of different services used and the number of different areas of unmet care needs across countries. CONCLUSIONS Unmet care needs in older people are particularly high in European countries where social service use is low, and where there is a lack of balance in the use of health and social care services. An expansion of social care services in these countries might be the most effective strategy for reducing unmet needs in disabled older people.

Estimated prevalence of mental disorders and the desire for social distance—Results from population surveys in two large German cities

The study is focused on two research questions: What are the publics estimates of the prevalence of depression, schizophrenia, bulimia nervosa and anorexia nervosa? What is the relationship between the estimated prevalence of the mental disorders and the publics desire for social distance? Analyses are based on a telephone survey in two large German cities (Hamburg and Munich, N=2014, response rate 51%). Vignettes with typical signs and symptoms suggestive of a depression, schizophrenia, bulimia nervosa and anorexia nervosa were presented. Respondents were asked about the lifetime prevalence of the mental disorders and their desire for social distance. Across all four disorders under study the respondents markedly overestimate the rates of lifetime prevalence. Increasing prevalence estimation is associated with a significant decrease in the desire for social distance in case of schizophrenia. As for depression, anorexia nervosa and bulimia nervosa there are no significant associations. Many campaigns aimed at reducing stigma emphasize the high prevalence of mental disorders. The assumption of these campaigns is that reduction of the perceived distinction leads to a decrease of the desire for social distance towards those afflicted. Our results indicate that this may not generally be an effective way to reduce stigma.

The Impact of Sociodemographic Factors on the Utilisation of Support Services for Family Caregivers of Elderly Dependents – Results from the German Sample of the EUROFAMCARE Study

Objectives: As in nearly all European countries, demographic developments in Germany have led to both a relative and an absolute increase in the country’s elderly population. The care and support needed by these people is primarily provided by relatives or friends and close acquaintances within the home environment. The major challenges for society are to sustain, promote and support these informal resources. In order to achieve this, it is crucial that family caregivers are provided with situation-specific services that support them and relieve their burden of care. The major challenges for society are therefore to sustain, promote and support informal resources and to provide the opportunity for the use of services aimed at assisting and relieving the burden of family caregivers. Methods: In the context of the EUROFAMCARE study, 1,003 family caregivers from Germany were interviewed at home about their experiences using a standardized questionnaire. Included in the study were primary caregivers providing at least four hours of personal care or support per week to a relative aged 65 years or older. Subjects solely providing financial support were excluded. In this paper, a linear regression analysis has been conducted to analyse impact of sociodemographic factors on the utilisation of support services. Results: The family caregivers were 54 years on average (SD=13.4), 76% of them were female. The dependent elderly were 80 years on average (SD=8.3), and 69% of them were women. 60% of them were receiving long-term care insurance benefits. Use of support services aimed directly at family caregivers is very low. After including certain services aimed primarily at those in need of care but also often serving as a source of relief for family caregivers, the percentage of caregivers using support services increased slightly. Among sociodemographic characteristics, caregivers’ gender and education level have the greatest influence on services use. Other influential factors are caregivers’ perception of their caregiving burden and their assessment of the dependent family member’s need for assistance and support.

Changes in depression stigma after the Germanwings crash - Findings from German population surveys.

BACKGROUND Media coverage of the Germanwings plane crash intensely focused on the co-pilots mental illness and was criticized for potentially increasing depression stigma. We explored whether stigma beliefs towards persons with depression changed in April 2015 (about one month after the crash) compared to 2014. METHOD Telephone surveys among the adult population were conducted in Munich, Germany (N=650 in 2014 and N=601 in 2015). In both surveys, four components of stigma were assessed: (1) characteristics ascribed to persons with a depression, (2) belief in a continuum of symptoms from mental health to mental illness, (3) emotional reactions to people afflicted by depression (fear, anger, and pro-social reactions), and (4) desire for social distance. RESULTS Some stigmatizing attitudes have increased after the crash. More specifically, we found more pronounced changes in the attributes ascribed (stereotypes) and in the perceived separation from persons afflicted (continuum beliefs) than in the emotional reactions and the desire for social distance. However, overall increase in depression stigma was smaller than expected as changes were not statistically significant in the majority of the analyzed items. LIMITATIONS Due to the study design no causal interpretation of results is possible. Moreover, evidence presented is confined to a regional German sample. CONCLUSIONS A single devastating event and related media coverage seem to have a limited impact on public stigmatizing attitudes.

Self-help friendliness: A German approach for strengthening the cooperation between self-help groups and health care professionals

Public and patient involvement in social and health care has proceeded in many civil societies. Depending on the legislations on national and community levels, citizens and patients have a greater say in shaping social and health care. In Germany, the patient involvement by self-help organizations at the macro level (national level and level of federal states) has significantly developed over the last ten years. At the meso level, however, the patient involvement is neither such far nor such systematically developed. The concept of self-help friendliness (SHF) in health care is a patient centred model that allows the development and implementation of patient participation in different health care institutions: hospitals, ambulatory medical care, public health institutions, rehabilitation facilities etc. In a series of projects on SHF we have (1) analysed the needs and wishes of self-help groups for cooperation with health care professionals as well as their experience, (2) gathered facilitators and barriers concerning the cooperation between self-help groups and hospitals, (3) developed a framework concept for SHF in hospitals including eight quality criteria for measuring SHF, and (4) implemented the framework of SHF in about 40 health care institutions (www.selbsthilfefreundlichkeit.de). Further projects followed: development of an instrument for measuring SHF in hospitals, integration of SHF-criteria in quality management systems in inpatient care as well as in out-patient care, and transferring SHF to a) medical ambulatory care, b) public health departments, and c) rehabilitation facilities. Considering advantages and shortcomings of the approach, we can summarize that implementing SHF is feasible, transferable and a helpful measure for promoting patient centeredness in health care.

Emotional reactions toward people with dementia – results of a population survey from Germany

BACKGROUND Emotional reactions toward people with disorders are an important component of stigma process. In this study, emotional reactions of the German public toward people with dementia were analyzed. METHODS Analyses are based on a national mail survey conducted in 2012. Sample consists of persons aged 18 to 79 years living in private households in Germany. In all 1,795 persons filled out the questionnaire, reflecting a response rate of 78%. Respondents were asked about their emotional reactions and beliefs about dementia. RESULTS A vast majority of the respondents expressed pro-social reactions, i.e. they felt pity, sympathy, and the need to help a person with dementia. Dementia patients rarely evoked anger (10% or less). Between 25% and 50% of the population showed reactions indicating fear. Respondents who had contacts with a person having dementia or had cared for a dementia patient tended to show less negative reactions (fear, anger) and more pro-social reactions. Respondents who showed pronounced fearful reactions were less likely to believe that dementia patients had a high quality of life, were less willing to care for a family member with dementia at home, and were more skeptical about early detection of dementia. Comparison with the results of another study suggests that fearful reactions toward persons with dementia are much more pronounced than in the case of depression, and less pronounced than in the case of schizophrenia. CONCLUSIONS Fearful reactions toward people with dementia are quite common in the German general public. To reduce fear, educational programs and contact-based approaches should be considered.

The impact of care on family and health-related quality of life of parents with chronically ill and disabled children

Abstract Purpose: Parents of disabled and/or chronically ill children are more vulnerable regarding their health compared to parents of healthy children. This study examines how far the burden of care is associated with health-related quality of life (QoL) in parents, across different illnesses and disabilities. Moreover, it is unclear whether and to which extent familial resources can explain the association between parents’ care burden and health. Method: Data stem from a survey with the German Children’s Network, a self-help umbrella organization of parents and families of chronically ill and disabled children. Data collection was conducted nationwide with a standardized online questionnaire, which included children’s diagnoses and severity, burden of care, family and socioeconomic status, health-related QoL (SF-12) and family impact (Impact on Family Scale, IFS). 1567 parents participated. Results: A higher burden of care is associated with higher risks for poor health-related QoL. Especially, social impact and financial burden, which are both associated with care, can help to explain these associations. Conclusions: Future interventions should focus not only on the affected child but also on the whole family system and its social integration, as this seems likely to relief parents from burden of care. Therefore, a sustainable cooperation of health care institutions and professionals with self-help groups and parental initiatives is recommended. Implications for Rehabilitation Parents of disabled and chronically ill children are a vulnerable group regarding their health-related quality of life. A higher burden of care is associated with less social contacts, higher financial burden and higher help-needs in the household, which significantly contribute to higher health risks. Rehabilitation should take these constraints into account and put a stronger focus on the family of disabled and chronically ill children to support their inclusion. A sustainable and formally anchored collaboration with self-help and patient groups is recommended.

Differences in depression stigma towards ethnic and socio-economic groups in Germany – Exploring the hypothesis of double stigma

BACKGROUND Ethnic minorities and people with a low socio-economic status (SES) are often mentioned groups potentially affected by double stigma when faced with the burden of mental illness. Against this background we examine differences in public attitudes towards a) migrant vs. non-migrant persons with depression and b) low vs. high SES persons with depression. METHOD Analyses are based on data of a representative cross-sectional telephone survey among the adult population in Germany (N=2013). To compare the four groups, different depression vignettes were presented to the respondents. Three components of stigma were assessed in the survey: (1) characteristics ascribed to persons with a depression, (2) emotional reactions to people afflicted by depression, and (3) desire for social distance. RESULTS Respondents less often felt annoyed when the person in the depression vignette was a migrant coming from Turkey. However, differences are not statistically significant in the vast majority of the analyzed items. In terms of the comparison between high and low SES persons, analyses reveal small and inconsistent differences in public depression stigma. LIMITATIONS The study focusses on two deprived groups (ethnic minorities and people with a low SES) and is restricted to Germany. CONCLUSIONS Individuals with a low SES (compared to those with a high SES) and migrants (compared to non-migrants) with depression do not seem to be confronted with double public stigma in terms of stereotypes, emotional reactions, and desire for social distance.

Involving self-help groups in health-care institutions: the patients' contribution to and their view of 'self-help friendliness' as an approach to implement quality criteria of sustainable co-operation.

The importance of patient participation and involvement is now widely acknowledged; in the past, few systematic health‐care institution policies existed to establish sustainable co‐operation. In 2004, in Germany, the initiative ‘Self‐Help Friendliness (SHF) and Patient‐Centeredness in Health Care’ was launched to establish and implement quality criteria related to collaboration with patient groups.

Quality of life of Turkish type 2 diabetics in Germany and Turkey – a comparison between Hamburg and Istanbul

Objectives. The analyses address the following research questions: (1) Do Turkish diabetics in Germany and Turkey differ in terms of quality of life? (2) If yes, can these differences (in part) be explained by social factors (age, gender, education, household size), functional limitations and availability of support? (3) Are social factors, functional limitations and availability of support differently associated with quality of life among Turkish diabetics in Germany and Turkey? Design. For this comparative cross-sectional study, 111 patients with type 2 diabetes were personally interviewed in Istanbul (Turkey) and 294 Turkish patients in Hamburg (Germany). For quality of life measurement we have used the Turkish version of the WHOQOL-Bref-26. Sociodemographics included age, sex, education and household-size. Health related functional limitations were assessed on the basis of an index of (instrumental) activities of daily living including the availability of help. Statistical analyses were conducted on group comparisons with Chi-square- and T-tests as well as linear regressions. Results. There are no significant differences between Turkish diabetics in Germany and Turkey in the physical and the psychological dimensions of the WHOQOL-Bref. However, in the WHOQOL-domains ‘social QoL’ and ‘environmental QoL’ Turkish diabetics living in Hamburg have a significantly better quality of life than their counterparts in Istanbul. These differences cannot be explained by individual sociodemographic factors, functional limitations and availability of support. Furthermore, we found much stronger positive associations between education and quality of life in Istanbul than in Hamburg. Conclusion. Beyond strong similarities between the two samples in sociodemographics, physical and mental health the social and environmental quality of life was significantly assessed better by the Turkish diabetics living in Hamburg. This is most likely an effect of public investment in social security, infrastructure and health care which is also influencing the decision as to where to spend life in retirement.