Burden of support: a counter narrative of service users' experiences with community housing services.

Community housing services adopt care models such as rehabilitation, recovery-oriented care and person-centered planning to improve the quality of life of service users with an intellectual or psychiatric disability. However, the way these care models are implemented and practiced can negatively impact service users' experience with the service as their complex needs go unmet. In this paper, we conceptualize these experiences through developing the counternarrative of burdens of support. For this we draw on burden of treatment theory. We conducted ethnographic fieldwork in a community service organization in the Netherlands. This included participant observation (84 h), interviews with service users (n = 20), experts-by-experience (n = 8), family members (n = 10) and photovoice workshops. Our analysis identifies four burdens of support: burden of self-determination; re-identification; responsibilisation and re-placement. The results show that burden of support is very much a relational concept: through their support, professionals can aggravate or alleviate burden.

Points of interestPeople with intellectual or psychiatric disabilities often receive support with living in the community. Good support fits people's needs (e.g. person-centered planning), builds on people's strengths and contributes to recovery and community participation.Even when support is practiced or organized with such aims, service users can have negative experiences. In this research we call this: 'burden of support'.Examples of burden of support identified include:Clients' needs and wishes are sometimes not sufficiently attended too when working with a personal care plan.Too much responsibility is sometimes shifted to clients, which results in feelings of failing or abandonment.The focus on strengths and recovery sometimes leaves too little room for clients to voice support needs.Having to move to a different home or neighborhood as part of becoming more independent can result in many difficulties including loneliness.The research recommended that those who improve services should also alleviate these burdens.

Ask us! Adjusting experience-based codesign to be responsive to people with intellectual disabilities, serious mental illness or older persons receiving support with independent living.

INTRODUCTION: Experience-based codesign (EBCD) is a valuable tool for participatory quality improvement. However, the EBCD process needs to be adjusted to make it suitable for long-term care. The focus of the improvement process needs to shift to the care relationship, as this is an important part of the quality of care in these settings. Furthermore, the EBCD process needs to be made more accessible to vulnerable populations. METHODS: Through a participatory research approach, EBCD was adjusted to long-term care. The research was conducted in two care organisations: one supporting people with serious mental illness and intellectual disabilities in independent living and one providing homecare services for older persons. RESULTS: The participatory research resulted in the development of 'Ask us!'-a method for critical reflective codesign. The research furthermore provided valuable lessons for participatory projects with vulnerable clients. A common problem with participatory research in long-term care is ensuring the involvement of clients and informal carers. We report on various strategies developed to include experiences of a diverse set of services users, such as combining interviews with participant observation, photo-voice and involving experts-by-experiences as co-ethnographers. In close collaboration with an inclusive theatre company, these experiences were translated into 42 short videos on complex situations in the care relationship from the perspective of clients, professionals or informal carers. These videos instigate critical reflection and accelerate the participatory quality improvement process. Moreover, practical tools were developed to overcome barriers regarding the involvement of people with disabilities. These include the use of photo-elicitation to enable participation of clients with disabilities in heterogeneous group discussions and involving experts-by-experience as proxies to share experiences of clients for whom participation in the 'Ask us' method remains inaccessible. CONCLUSION: The result of a robust participatory process, 'Ask us!' is a promising method for participatory quality improvement in long-term care. The research furthermore generated lessons for involving vulnerable populations in participatory research and codesign. PATIENT OR PUBLIC CONTRIBUTION: Clients were involved as informants, sharing their experiences with the care relationship in interviews, photovoice and observations. They were also involved as consultants, helping to analyse input for the film scripts during data validation sessions.

Aging With Cerebral Palsy: A Photovoice Study Into Citizenship.

Background: Adults with cerebral palsy (CP) may experience an increasing impact of their disability on daily life and this may interfere with their citizenship. Citizenship is a layered construct. Next to formal and theoretical significations, and civil rights acts such as the UN Convention on the Rights for Persons with Disabilities (CRPD), the meaning of citizenship is formed by the person themselves. The present study aimed to gain insight into what citizenship means for adults with CP 40 years or older and what is needed to support and pursue their citizenship to improve person-centered rehabilitation which can facilitate this process. Methods: Adults with CP (>40 years) without intellectual disability were recruited from medical records of a large rehabilitation center to participate in a qualitative study using the photovoice method. Participants were asked to take photos of objects or life situations that constituted citizenship for them; these photos were then the prompts for the semi-structured interviews that were held face-to-face at their homes. Background and clinical characteristics were gathered using a short face-to-face questionnaire. Data were analyzed through inductive thematic analysis. Results: Nineteen adults participated [mean age (SD) 57.8 (9.4) years (range 44-79), six men]. From the analysis four themes emerged: (a) Meanings of citizenship; (b) Citizenship: Facilitator and barriers; (c) Paradoxes of support and participation; and (d) Future. Furthermore, next to the ability to participate in society without restrictions, sense of belonging was reported to be an important aspect of "meanings of citizenship." The physiotherapist was perceived as an important health professional to maintain physical activity and deal with the impact of aging with CP on daily activities. Complex healthcare and support services regulations and aging affected citizenship negatively. Conclusion: Middle-aged and older adults with CP view citizenship as the ability to participate and belong in society. To optimize their citizenship the challenges and individual needs must be seen and supported by person-centered rehabilitation and support services. Simplification of complex healthcare and services regulations can further improve citizenship.

Ethical Dilemmas of Participation of Service Users with Serious Mental Illness: A Thematic Synthesis.

Mental health professionals are expected to stimulate the participation of service users with serious mental illness. This not only changes what is expected from service users and professionals, it also changes the values underlying their relationship. The value of autonomy becomes more important as a result. This raises potential ethical dilemmas. This paper reports the findings of a thematic synthesis of 28 papers on the views of service users, professionals and family members on the care relationship in inpatient, outpatient and community services for people with serious mental illness. It puts forward various perspectives on participation of service users, foregrounding differing values, which in turn can lead to ethical dilemmas for professionals. The key implications for mental health professionals and future research are discussed.

People with activity limitations' perceptions of their health condition and their relationships with social participation and experienced autonomy.

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.

A membership categorization analysis of roles, activities and relationships in inclusive research conducted by co-researchers with intellectual disabilities.

BACKGROUND: Inclusive research is studied mainly in short-term collaborations between researchers with and without intellectual disabilities focusing on practicalities. Structural study of long-term collaborations can provide insight into different roles of inclusive researchers, thereby contributing to a collective approach. METHOD: Interviews with inclusive research team members (n = 3), colleagues (n = 8), and managers (n = 2) and three group discussions within the inclusive research team were held. Data were analysed following membership categorization analysis (MCA) adapted to the needs of the inclusive research team. RESULTS: This MCA provides insight into the complexity of inclusive research, reflected in the multitude of identified roles and activities. Analysis indicates that researchers with and without intellectual disabilities complement each other. CONCLUSIONS: The activities identified in this study provide valuable information for discussing roles and responsibilities from the outset, so that dialogue starts at the core of inclusive research: the process between researchers with and without intellectual disabilities.

An exploration of the participation of people with intellectual disabilities in research-a structured interview survey.

BACKGROUND: Even though participation of people with intellectual disabilities in research is increasingly common, there is little insight into how many people with intellectual disabilities participate, their motivations to participate and their interests regarding study results. METHOD: Five questions were added to the Panel Living Together (PLT) survey among 508 people with intellectual disabilities. The questions aimed to gain insight into the (i) frequency of participation; (ii) methods used to participate; (iii) motivations to participate; and (iv) interests regarding study results. RESULTS: Although 73.5% (n = 347) of the respondents enjoyed their participation and 71.6% (n = 312) found it important to participate, only 11.8% (n = 60) participated in research other than PLT. Of the respondents, 61% (n = 261) indicated they wanted to be informed about study results, 29.1% (n = 148) of this group stated they wanted to compare, learn and share information. CONCLUSIONS: Future research should focus on how motivations of people with intellectual disabilities to participate in inclusive research, such as "empowerment," can be supported to facilitate their involvement in research.

Active involvement of people with intellectual disabilities in health research - A structured literature review.

Actively involving people with intellectual disabilities (ID) in health research, also known as inclusive health research, is increasingly popular. Currently, insight into experiences of this type of research is scarce. To gain insight into this topic, a structured literature review was conducted focussing on (1) existing theories, (2) inclusive methods, (3) added value and (4) barriers and facilitators. Literature published between January 2000 and January 2014 was included covering keywords related to ID and inclusive health research. Searches were performed in Pubmed, CINAHL, PsycINFO, EMBASE and MEDLINE databases, resulting in 26 included papers. Papers were quality assessed and analysed using qualitative data analysis software. Four theories were often simultaneously addressed: participatory research, emancipatory research, inclusive research and Arnstein's ladder. Barriers and facilitators could be divided into preparing, undertaking and finalising phases of research. Authors indicated that their motivation to conduct inclusive health research was based on demands by policy and funding bodies or was based on ethical considerations (i.e., ethical notions and giving people with ID a voice). Upon completion, authors perceived increased quality and validity of their research and several benefits for stakeholders (i.e., people with ID, researchers and healthcare professionals). Overall, there was consistency in their perception of the most important aspects of inclusive health research. Based on the analysis of included papers, four recommendations of inclusive health research with people with ID were found. Inclusive health research should be: (1) tailoring to the specific study; (2) anticipating all stakeholders; (3) considering its added value; and (4) providing insight into its process.

Patients' and partners' illness perceptions in screen-detected versus clinically diagnosed type 2 diabetes: partners matter!

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.

Participation of people with physical disabilities: three-year trend and potential for improvement.

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.

(De)centralization of social support in six Western European countries.

INTRODUCTION: Participation of disabled or chronically ill persons into the society may require support in the sense of human or technical aid. In this study we look into the decision making power of governments and the way citizens are involved in these processes. Decision making power can be political, financial and administrative and may be organized at national, regional or local level. METHODS: This is a cross-sectional descriptive study of the decision making power in Belgium, France, Germany, the Netherlands, Sweden and the United Kingdom in 2010. We focused on acts and regulations for human and technical aids and for making the environment accessible. RESULTS: Several acts and regulations were identified in relation to social support. In the Netherlands and Sweden social support was mainly organized in one act, whereas in the other countries social support was part of several acts or regulations. Citizen's voice appeared to be represented in boards or advisory committees. Descriptions of entitlements varied from explicitly formulated to globally described. CONCLUSIONS: The level of decision making power varies between the countries en between the types of decision making power. Citizens' participation is mainly represented through patient associations. Countries with strongly decentralized decision making make use of framework legislation at national level to set general targets or aims.

Attitudes and dilemmas of caregivers supporting people with intellectual disabilities who have diabetes.

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.

When work and satisfaction with life do not go hand in hand: health barriers and personal resources in the participation of people with chronic physical disabilities.

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.

Validity of the impact on participation and autonomy questionnaire: a comparison between two countries.

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.

Striking variations in consultation rates with general practice reveal family influence.

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.

All in the family: headaches and abdominal pain as indicators for consultation patterns in families.

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.

Changing patterns of home visiting in general practice: an analysis of electronic medical records.

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.

Why does it run in families? Explaining family similarity in help-seeking behaviour by shared circumstances, socialisation and selection.

Why do contact frequencies with general practice of family members resemble each other? Many aspects related to the clustering of health-care utilisation within families have been studied, but the underlying mechanisms have not been addressed. This article considers whether family similarity in contact frequency with general practice can be explained as (a) a result of shared circumstances, (b) through socialisation, and (c) through homogeneity of background characteristics. Data from the second Dutch national survey of general practice were used to test these mechanisms empirically. This survey recorded all consultations in 2001 for 104 general practices in the Netherlands, serving 385,461 patients. Information about socio-demographic characteristics was collected by means of a patient survey. In a random sample, an extended health interview took place (n=12,699). Overall, we were able to show that having determinants in common through socialisation and shared circumstances can explain similarity in contact frequencies within families, but not all hypotheses could be confirmed. In specific terms, this study shows that resemblances in contact frequencies within families can be best explained by spending more time together (socialisation) and parents and children consulting a general practitioner simultaneously (circumstances of the moment). For general practitioners, the mechanisms identified can serve as a framework for a family case history. The importance of the mechanism of socialisation in explaining similarities in help-seeking behaviour between family members points to the significance of knowledge and health beliefs underlying consultation behaviour. An integrated framework including these aspects can help to better explain health behaviour.

Changes in patients' attitudes towards the management of minor ailments.

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.

Validity of the Canadian Occupational Performance Measure: a client-centred outcome measurement.

OBJECTIVE: To study the convergent and divergent validity of the Canadian Occupational Performance Measure (COPM). DESIGN: Cross-sectional study. SETTING: The occupational therapy departments of two university hospitals in Amsterdam. SUBJECTS: One hundred and five consecutive outpatients. OUTCOME MEASURES: The COPM is a measure of a client's self-perception of occupational performance in the areas of self-care, productivity and leisure. Outcome measures of the COPM are: the client's most important problems in occupational performance and a total score for performance and a total score for satisfaction for these problems. Problems reported in the COPM were compared with the Sickness Impact Profile (SIP68), the Disability and Impact Profile (DIP) and an open-ended question. RESULTS: Complete data were obtained for 99 clients. The identification of occupational performance problems with the COPM surpassed the items reported in the SIP68, the DIP and the open-ended question, which confirms the surplus value of the COPM. Divergent validity was further demonstrated by the low correlation coefficients between the total SIP68 scores and the COPM. Seventy-four per cent of the occupational performance problems reported in the COPM had a corresponding item in the DIP and 49% had a corresponding item in the SIP68. Convergent validity was supported by the fact that 63% of the corresponding problems in the DIP were reported to be a disruption of quality of life and 74% of the corresponding problems in the SIP68 were identified as a disability. CONCLUSION: The results of this study provide supportive evidence for the convergent and divergent validity of the COPM. The data support the assumption that the COPM provides information that cannot be obtained with current standardized instruments to measure health.