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Background: Community participation has been defined as performing daytime activities by people while interacting with others. Previous studies on community participation among people with intellectual disability (ID) have mainly focused on the domestic life aspect. This study investigates the variation in community participation in the domains work, social contacts and leisure activities among people with ID in the Netherlands. A number of categories of people with ID were distinguished by: (1) gender; (2) age; (3) type of education; (4) severity of ID; and (5) accommodation type. Methods: Data were gathered on 653 people with mild or moderate ID, of whom 513 by oral interviews and 140 by structured questionnaires filled in by representatives of those who could not be interviewed. Pearson chi-square tests were used to test differences between categories of people with ID in the distributions of the participation variables. Additional logistic regression analyses were conducted to correct for differences between the categories in other variables. Results: Most people with mild or moderate ID in the Netherlands have work or other daytime activities, have social contacts and have leisure activities. However, people aged 50 years and over and people with moderate ID participate less in these domains than those under 50 years and people with mild ID. Moreover, people with ID hardly participate in activities with people without ID. Conclusion: High participation among people with a mild or moderate ID within the domains of work, social contact and leisure activities does not necessarily indicate a high level of interaction with the community, because the majority hardly interact with people without ID. Furthermore, older people with ID and people with a more severe level of ID seem to be more at risk for social exclusion. (Contains 7 tables, 1 figure and 1 footnote.)

Introduction: Therapeutic alliance (TA) is a necessity for optimal physiotherapy treatment for patients with musculoskeletal (MSK) pain1,2. Mutual understanding and open communication are important in building strong TA1,2. Building TA with patients from socio-cultural vulnerable groups seems to be difficult and might be related with higher risk on poor treatment outcomes3. Therefore, the aims of this study are to: (1) determine facilitators and barriers for building optimal TA with patients with MSK pain from socio-cultural vulnerable groups (2) develop and implement interventions to optimize TA. Methods: This participatory action research consists of multiple cycles of five phases in which researchers, clinicians and patients work closely together to investigate and optimize TA. Both observational research and semi-structured interviews will be conducted to gather data for reflection and deep understanding. Preliminary results will be used to collectively develop and implement interventions to optimize TA. This cycle of data collection and reflection will be repeated until optimal outcomes in TA are achieved from both therapist and patient perspective. Results: Diverse facilitators and barriers in TA are expected such as communication styles, language barriers, and expectations of treatment. Working together with patients and physiotherapists as co-researchers creates the ability to jointly investigate and optimize TA. Discussion: Since MSK pain is a frequent and debilitating health problem in patients from socio-cultural vulnerable groups, research into improving TA is important. By using participatory action research, knowledge about barriers and facilitators for TA can be obtained and changes in current physiotherapy practice may be facilitated. Process evaluation: Currently, the research design and practical preparations are being finalized. [ABSTRACT FROM AUTHOR]

Background The population of ageing people with mild and moderate intellectual disabilities (ID) is growing rapidly. This study examines how personal resources (physical health, mental health and social networks) impact the well-being of ageing people with ID. Methods Longitudinal survey data on 667 people with a mild or moderate ID were acquired via interviews in 2006 and 2010. Indicators of personal resources (physical health, mental health and social networks) were assessed, as were indicators of well-being (satisfaction with life, happiness and loneliness). Additionally, data on background characteristics and autonomy were gathered. Results The results show that age is positively related to decreased mobility and auditory disabilities and negatively related to independent living, autonomy in how one spends one's leisure time and autonomy in decision-making. Longitudinal analyses demonstrated that, with the exception of health that deteriorated, and social satisfaction that improved, almost all variables remained stable over the 4-year period. Further, good physical health in 2006 predicted happiness in 2010. Conclusion Despite the fact that age is associated with poorer physical and mental health and a smaller social network, this study showed that older people with ID have relatively high levels of well-being. Findings are discussed in the light of coping with ageing and impact of life events. [ABSTRACT FROM AUTHOR]

Background The prevalence of diabetes is relatively high in people with intellectual disability (ID). However, little is known about how people with ID experience having diabetes and how they manage the condition. Method Seventeen people with mild to moderate ID who have diabetes were interviewed. A framework on illness perceptions having an influence on diabetes self-management was used as a basis for the interviews and for the qualitative analysis. Results Diabetes is associated with feelings of loss with regard to food intake and choices, and with being controlled. Most respondents did not feel ill. Information about diabetes for people with ID is lacking, but they do have questions. Family members with diabetes often serve as a role model. Diabetes self-management is impeded by a lack of information, motivation and support, few opportunities for learning, and by health factors, mood and living accommodation. Communication between health professionals and people with ID about diabetes rarely takes place. Conclusions Developing diabetes information together with the people concerned is an important step towards engagement in self-management activities. At the same time, the professional staff in living arrangements should stimulate and support the development of self-management skills in people with diabetes, by providing opportunities to learn and develop. Therefore, the professional staff also need skills and information to be able to support people with ID in building the skills and confidence they need to lead active and fulfilling lives, despite having diabetes. [ABSTRACT FROM AUTHOR]

Background: People with activity limitations participate less in society, which may be due to both societal barriers and personal factors. The aim of this study was to examine the role of one specific personal factor, namely the perceptions that people have of their health condition. We hypothesized that perceptions of more personal control and less negative consequences increase the likelihood of participation in social activities and of experiencing autonomy in participation., Methods: Survey data of 1681 people with activity limitations participating in a Dutch nationwide panel-study were analyzed by means of logistic and linear regression analyses. Perceptions of the health condition were assessed with the revised Illness Perception Questionnaire (IPQ-R). Social participation was operationalized as doing volunteer work, participating in club activities and meeting friends. Two scales of the Impact on Participation and Autonomy questionnaire were used to assess experienced autonomy regarding participation., Results: People who perceived more personal control over their health condition were more likely to participate in volunteer work (OR = 1.36) and club activities (OR = 1.35). People who believed their condition to be long-lasting were also more likely to do volunteer work (OR = 1.34), whereas people who reported a better understanding of their condition were more likely to frequently meet friends (OR = 1.19). Perceptions of the health condition explained 14% of the variance in experienced autonomy in participation, in addition to the severity of participants' activity limitations and their age, gender and education level. Especially a belief in more serious consequences, a perception of a long-lasting and less controllable condition, a perception of less understanding of the condition and a greater perceived impact on the emotional state were associated with experiencing less autonomy in participation., Conclusions: People with activity limitations who experience less control over their condition participate less in volunteer work and club activities than people who experience more control. Perceptions of the health condition are just as important to explain differences in participation as the severity of people's activity limitations and their socio-demographic characteristics. Health and social care professionals should pay attention to people's perceptions, to help people with activity limitations to participate according to their needs, circumstances, and preferences.

Background: In type 2 diabetes, educational interventions that target differences between patients' and partners' illness perceptions have been advocated., Objective: To investigate how the route to diagnosis of type 2 diabetes (through screening versus clinical symptoms) affects illness perceptions of patients and their partners., Methods: In a cross-sectional study, we enrolled patients aged 40-75 years from general practices in the Netherlands with a new diagnosis of type 2 diabetes (≤3 years), detected by either screening (n = 77) or clinical symptoms (n = 32). Patients and their partners each completed a postal Brief Illness Perception Questionnaire (Brief IPQ), and up-to-date clinical data were obtained from their GP. The Brief IPQ scores of the screening and clinical diagnosis groups were compared for both patients and partners, and multiple variable linear regression models with Brief IPQ scores as outcomes were developed., Results: The route to diagnosis did not appear to have a strong influence on patients' illness perceptions but did influence illness perceptions of their partners. Partners of patients diagnosed through screening perceived greater consequences for their own life, had a stronger feeling that their patient-partners had control over their diabetes, were more concerned about their partners' diabetes, and believed that their patient-partners experienced more diabetes symptoms, compared with partners of patients who were diagnosed through clinical symptoms., Conclusions: The route to diagnosis of type 2 diabetes has a greater impact on the illness perceptions of partners than that of patients. Professionals in diabetes education and treatment should consider these differences in their approach to patient care.

Objective: To provide an insight into developments in participation over the period 2008 to 2010 among Dutch people with physical disabilities and into their demands for additional participation., Design: Trend study with additional cross-sectional survey., Setting: Community-dwelling people with physical disabilities., Participants: A sample of 1868 (2008), 1900 (2009), and 2163 (2010) people (≥15y) with mild, moderate, or severe physical disability., Interventions: Not applicable., Main Outcome Measures: Eight indicators of participation within International Classification of Functioning, Disability and Health domains: use of neighborhood facilities, going out of the house, having paid work, performing volunteer services, visiting leisure facilities, performing club activities, meeting friends, and use of public transport., Results: No increase in participation rates was found over the years 2008 to 2010. In 2010, 18% of the people who did not have a paid job wanted to work, especially younger (<40y) people and more highly educated people, 30% wanted to do more activities in their leisure time, and 23% wanted more social contacts. People who did not participate in a specific activity in 2010 were more likely to have a desire for additional participation than were people who already participated. People with severe disability were less likely to want work; however, they did express a wish to increase their social activities., Conclusions: Although no increase in participation was found, this does not imply that participation rates among people with physical disabilities have already reached optimal levels. Respondents' stated wish for additional participation provides potential for improvement. Further research should focus on individual values, participation appraisal, and interaction between individual and environmental characteristics to enhance participation., (Copyright © 2013 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.)

Objective: To explore how professional caregivers in communal living arrangements support people with a mild or moderate intellectual disability (ID) who have diabetes., Methods: A qualitative study, 13 caregivers participated in semi-structured interviews., Results: Professional caregiver support in diabetes care is almost solely directed towards administering medication and controlling food intake. Caregivers want to provide person-centered care but are hindered by a conflict between protecting a client's health and at the same time respecting autonomy. None of the caregivers had received training in supporting self-management; their knowledge about diabetes is limited. The few that engaged their client in self-management stressed the importance of a positive and collaborative approach., Conclusion: This study provides a first insight into the challenges that professional caregivers experience when a client with ID has diabetes. More education for caregivers seems needed. Self-management support is likely to benefit from consensus among caregivers about what comprises person-centered care and self-management in people with ID who have a chronic disease., Practice Implications: Increasing caregivers' awareness of the importance of supporting self-management in people with ID and a chronic disease is essential. Discussing practice examples in the light of existing knowledge about developing autonomy will contribute to their awareness., (Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.)

People with chronic physical disabilities participate less in both paid and voluntary work and are less satisfied with their lives than people without health problems. Governments and scientists have suggested that participation in employment is the main road to well-being. We analysed national survey data on the participation in work and satisfaction with life, comparing people with a chronic illness and a physical disability (n=603) to people with a chronic illness but without a physical disability (n=1199) and the general population (n=6128) in the Netherlands. The results show that the relationship between happiness and work is different for people with a chronic illness and a physical disability, as compared to the other two populations. Fewer people with a chronic illness and disability were categorized as 'satisfied people with work' (i.e. participating in work and satisfied with their life), while most people belonged to a group of 'satisfied people without work' and, surprisingly, not to the expected group of 'dissatisfied people without work'. In order to explain this exceptional distribution we modelled satisfied participation in work as an outcome of a balance between personal resources and barriers. By means of discriminant regression analysis, we identified the severity of motor disability as the main barrier, and education level and age, as the main resource factors that distinguish between 'satisfied people with work' and others among the group of people with a chronic illness and a physical disability.

Purpose: To evaluate the cross-cultural validity of the five subscales of the Impact on Participation and Autonomy (IPA) measure and the full 31-item scale., Method: Data from two validation studies (Dutch and English) were pooled (n = 106). Participants (aged 18-75), known to rehabilitation services or GP practices, had conditions ranging from minor ailments to significant disability. Validity of the five subscales and the total scale was examined using Rasch analysis (Partial Credit Model). P values smaller than 0.01 were employed to allow for multiple testing., Results: A number of items in all the subscales except 'Outdoor Autonomy' needed rescoring. One 'Indoor Autonomy' item showed uniform DIF by country and was split by country. One 'Work and Education' item displayed uniform and non-uniform DIF by gender. All the subscales fitted the Rasch model and were invariant across country. A 30-item IPA also fitted the Rasch model., Conclusion: The IPA subscales and a 30-item scale are invariant across the two cultures and gender. The IPA can be used validly to assess participation and autonomy in these populations. Further analyses are required to examine whether the IPA is invariant across differing levels of disability and other disease groups not included in this study.

Background: The reasons why patients decide to consult a general practitioner vary enormously. While there may be individual reasons for this variation, the family context has a significant and unique influence upon the frequency of individuals' visits. The objective of this study was to explore which family factors can explain the differences between strikingly high, and correspondingly low, family consultation rates in families with children aged up to 21., Methods: Data were used from the second Dutch national survey of general practice. This survey extracted from the medical records of 96 practices in the Netherlands, information on all consultations with patients during 2001. We defined, through multilevel analysis, two groups of families. These had respectively, predominantly high, and low, contact frequencies due to a significant family influence upon the frequency of the individual's first contacts. Binomial logistic regression analyses were used to analyse which of the family factors, related to shared circumstances and socialisation conditions, can explain the differences in consultation rates between the two groups of families., Results: In almost 3% of all families, individual consultation rates decrease significantly due to family influence. In 11% of the families, individual consultation rates significantly increase due to family influence. While taking into account the health status of family members, family factors can explain family consultation rates. These factors include circumstances such as their economic status and number of children, as well as socialisation conditions such as specific health knowledge and family beliefs. The chance of significant low frequencies of contact due to family influences increases significantly with factors such as, paid employment of parents in the health care sector, low expectations of general practitioners' care for minor ailments and a western cultural background., Conclusion: Family circumstances can easily be identified and will add to the understanding of the health complaints of the individual patient in the consulting room. Family circumstances related to health risks often cannot be changed but they can illuminate the reasons for a visit, and mould strategies for prevention, treatment or recovery. Health beliefs, on the other hand, may be influenced by providing specific knowledge.

Purpose: Headaches and abdominal pain are examples of minor ailments that are generally self-limiting. We examined the extent to which patterns of visits to family physicians for minor ailments, such as headaches or abdominal pain, cluster within families., Methods: Using information from the Second Dutch National Survey of General Practice for 96 family practices, we analyzed the visits of families with at least 1 child aged 12 years or younger during a period of 12 months., Results: Family patterns were clearest in the visits of mothers and children. A large part of the similarity in the frequencies of contact by mothers and daughters could be attributed to shared family factors. This finding was especially true for families with a child who had a headache or abdominal pain as the presenting symptom, rather than physical trauma or chronic disease. Within families, we did not find any specific patterns of diagnoses. Diagnoses were recorded by family physicians. In the case of young children, family similarity may have been overestimated because parents initiated the visits and put their child's health problem into words., Conclusions: Visits to family physicians for headaches or abdominal pain can be seen as indicators of consultation patterns in families. Family patterns related to minor ailments are likely to be a result of socialization. Family consultation patterns might point toward specific needs of families and consequently at a different approach to treatment.

Background: In most European countries and North America the number of home visits carried out by GPs has been decreasing sharply. This has been influenced by non-medical factors such as mobility and pressures on time. The objective of this study was to investigate changes in home visiting rates, looking at the level of diagnoses in 1987 and in 2001., Methods: We analysed routinely collected data on diagnoses in home visits and surgery consultations from electronic medical records by general practitioners. Data were used from 246,738 contacts among 124,791 patients in 103 practices in 1987, and 77,167 contacts among 58,345 patients in 80 practices in 2001. There were 246 diagnoses used. The main outcome measure was the proportion of home visits per diagnosis in 2001., Results: Within the period studied, the proportion of home visits decreased strongly. The size of this decrease varied across diagnoses. The relation between the proportion of home visits for a diagnosis in 1987 and the same proportion in 2001 is curvilinear (J-shaped), indicating that the decrease is weaker at the extreme points and stronger in the middle., Conclusion: By comparison with 1987, the proportion of home visits shows a distinct decline. However, the results show that this decline is not necessarily a problem. The finding that this decline varied mainly between diagnoses for which home visits are not always urgent, shows that medical considerations still play an important role in the decision about whether or not to carry out a home visit.

Background: Patients' attitudes towards the management of minor ailments influence help-seeking behaviour. Up-to-date information about patients' attitudes is valuable for understanding changes in help-seeking behaviour., Aim: To describe changes in patients' attitudes between 1987 and 2001, and to explain the relationship between patients' attitudes and attributes of practices, practitioners and patients., Design: Two cross-sectional, Dutch National Surveys of General Practice (1987 and 2001; n = 9579 and n = 8405 patients, respectively)., Setting: General practice in the Netherlands., Method: Patients' attitudes were evaluated in health interviews. Data were analysed using multilevel regression analysis., Results: In 2001, patients' attitudes showed a shift away from consulting their GP for minor ailments. Attitudes are uniform across different types of practice, and mainly differ between patients. In 1987 as well as in 2001 the factors associated with firm beliefs about the benefits of GP's care in case of minor ailments were male, older age, lower educational level, a non-Western cultural background, and a visit to the GP in the past 2 months. Furthermore, the association between health status and beliefs about GPs dealing with minor ailments is more marked in 2001. Compared to 1987, the influences of GPs and the practice are more intertwined in 2001., Conclusions: Patients' attitudes towards the management of minor ailments have changed over the years, which implies that strategic action by the profession and the government has affected the way the public uses primary care. However, a marginal group of patients (elderly, less-educated, non-Western) is lagging behind this trend, and continuing to consult GPs for minor ailments.

Objective: To examine the extent to which the family influences individual use of general practitioner care., Design: Retrospective cohort study of all consultations in one calendar year. Multilevel modelling was used to analyse contact frequencies of individuals within families within practices., Setting: General practice in the Netherlands., Participants: 42 262 families with children aged 2-21 years registered in 96 practices., Main Outcome Measures: Family influence on individual frequency of contact with general practice and correlation in frequency of contacts between parents and children., Results: After correction for patients' age and sex, analysis of siblings indicates that 22% of the variance in frequencies of contact can be ascribed to influence of the family. This means that contact frequencies of family members within families resemble each other, whereas differences in contact frequencies exist between families. Almost 6% of the variance refers to differences between practices and 73% of the variance refers to individual differences. The strongest correlations were found between mothers and children and between children., Conclusions: The extent of shared help seeking behaviour within families has considerable implications in the context of the practice.