A consensus statement on how to conduct inclusive health research.

BACKGROUND: The active involvement of people with intellectual disabilities in research, or inclusive research, is relatively common. However, inclusive health research is less common, even though it is expected to lead to appropriate healthcare and increased quality of life. Inclusive health research can build upon lessons learned from inclusive research. METHOD: A total of 17 experts on inclusive (health) research without intellectual disabilities and 40 experts with intellectual disabilities collaborated in this consensus statement. The consensus statement was developed in three consecutive rounds: (1) an initial feedback round; (2) a roundtable discussion at the 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities World Congress; and (3) a final feedback round. RESULTS: This consensus statement provides researchers with guidelines, agreed upon by experts in the field, regarding attributes, potential outcomes, reporting and publishing, and future research directions, for designing and conducting inclusive health research. CONCLUSIONS: Consensus was reached on how to design and conduct inclusive health research. However, this statement should be continuously adapted to incorporate recent knowledge. The focus of this consensus statement is largely on inclusive health research, but the principles can also be applied to other areas.

Exploring academics' views on designs, methods, characteristics and outcomes of inclusive health research with people with intellectual disabilities: a modified Delphi study.

BACKGROUND: The British Medical Journal's (BMJ's) patient revolution strives for collaboration with patients in healthcare and health research. This paper studies collaboration with people with intellectual disabilities (ID) in health research, also known as inclusive health research. Currently, transparency and agreement among academics is lacking regarding its main aspects, preventing upscaling of the patient revolution. OBJECTIVE: This study aims to gain agreement among academics on 3 aspects of inclusive health research for people with ID: (1) designs and methods, (2) most important characteristics and (3) outcomes. DESIGN: A Delphi study was conducted with academics with experience in inclusive (health) research and on people with ID. The study consisted of 2 sequential questionnaire rounds (n=24; n=17), followed by in-depth interviews (n=10). RESULTS: Academics agreed on (1) a collaborative approach to be most suitable to inclusive health research, (2) characteristics regarding the accessibility and facilitation of inclusive health research, and (3) several outcomes of inclusive health research for people with ID and healthcare. Other characteristics agreed on included: atmosphere, relationship, engagement, partnership and power. It was stressed that these characteristics ensure meaningful inclusion. Interviewed academics voiced the need for a tool supporting the facilitation and evaluation of inclusive health research. There was ambiguity as to what this tool should comprise and the extent to which it was possible to capture the complex process of inclusive health research. DISCUSSION AND CONCLUSIONS: This study underlines the need for transparency, facilitation and evaluation of inclusive health research. The need for in-depth interviews after 2 Delphi rounds underlines its complexity and context dependence. To increase process transparency, future research should focus on gaining insight into inclusive health research in its context. A tool could be developed to facilitate and evaluate inclusive health research. This tool will be partially applicable to participatory research in general and thereby upscale the patient revolution.

Ageing with an intellectual disability: the impact of personal resources on well-being.

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.

People with mild to moderate intellectual disability talking about their diabetes and how they manage.

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.

Participation in daytime activities among people with mild or moderate intellectual disability.

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.

The reproducibility of the Canadian Occupational Performance Measure.

OBJECTIVE: To assess the reproducibility (reliability and inter-rater agreement) of the client-centred Canadian Occupational Performance Measure (COPM). DESIGN: The COPM was administered twice, with a mean interval of seven days (SD 1.6, range 4-14), by two different occupational therapists. Data analysis was based on intraclass correlation coefficients, the Bland and Altman method and Cohen's weighted kappas. SETTING: Occupational therapy departments of two university medical centres. SUBJECTS: Consecutive clients, with various diagnoses, newly referred to the outpatient clinic of two occupational therapy departments, were included. They were all over 18 years of age and perceived limitations in more than one activity of daily life. Complete data on 95 clients were obtained: 31 men and 64 women. RESULTS: Sixty-six per cent of the activities prioritized at the first assessment were also prioritized at the second assessment. The intraclass correlation coefficients were 0.67 (95% confidence interval (CI) 0.54-0.78) for the mean performance score and 0.69 (95% CI 0.56-0.79) for the mean satisfaction score. The limits of agreement were -2.5 to 2.4 for the mean performance score and -2.3 to 2.7 for the mean satisfaction score. For the separate prioritized problems, the weighted kappas ranged from 0.37 to 0.49. CONCLUSIONS: Inter-rater agreement of the prioritized problems was moderate. The reproducibility of the mean performance and satisfaction scores was moderate, but it was poor for the scores of the separate problems. Therefore, the mean scores should be used for individual assessment.

Shared help seeking behaviour within families: a retrospective cohort study.

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.

Occupational therapy for multiple sclerosis.

BACKGROUND: Multiple sclerosis (MS) patients are referred to occupational therapy with complaints about fatigue, limb weakness, alteration of upper extremity fine motor coordination, loss of sensation and spasticity that causes limitations in performance of activities of daily living and social participation. The primary purpose of occupational therapy is to enable individuals to participate in self-care, work and leisure activities that they want or need to perform. OBJECTIVES: To determine whether occupational therapy interventions in MS patients improve outcome on functional ability, social participation and/or health related quality of life. SEARCH STRATEGY: Relevant full length articles were identified by electronical searches in Medline, Cinahl, Embase, Amed, Scisearch and The Cochrane MS Group Trials Register. The reference list of identified studies and reviews were examined for additional references. Date of last search: December 2002. SELECTION CRITERIA: Controlled (randomized and non-randomized) and other than controlled studies addressing occupational therapy for MS patients were eligible for inclusion. DATA COLLECTION AND ANALYSIS: The methodological quality of the included trials was independently assessed by two reviewers. Disagreements were resolved by discussion. A list proposed by Van Tulder et al. (Van Tulder 1997) was used to assess the methodological quality. For outcome measures, standardized mean differences were calculated. The results were analysed using a best-evidence synthesis based on type of design, methodological quality and the significant findings of outcome and/or process measures. MAIN RESULTS: Only one randomized clinical trial was identified. Two other included studies were a controlled clinical trial and a study with a pre-post test design. The studies included 271 patients in total. Two studies evaluated an energy-conservation course for groups of patients and one study evaluated a counselling intervention. The results of the energy conservation studies could be biased because of the designs used, the poor methodological quality and the small number of included patients. The high quality RCT on counselling reported non-significant results. REVIEWER'S CONCLUSIONS: On basis of this review no conclusions can be stated whether occupational therapy improves outcome in MS patients. The lack of (randomized controlled) efficacy studies in most intervention categories of OT shows an urgent need for future research in occupational therapy for multiple sclerosis. Initially, a survey of occupational therapy practice for MS patients including the characteristics and needs of these patients is necessary to develop a research agenda for efficacy studies.

On autonomy and participation in rehabilitation.

PURPOSE: To explore the concept of autonomy as a basis for social participation, with particular reference to rehabilitation. METHOD: A study of relevant literature from the field of rehabilitation, building on theory developed in other fields (ethics, social sciences), and deriving important concepts and strategies for rehabilitation practice. RESULTS: The focus of rehabilitation for people with a chronic disabling condition is shifting from a biomedical to a client-centred perspective. Conceptions of autonomy vary among individuals and cultures, but a crucial distinction can be made between decisional autonomy (the ability to make decisions without external restraint) and executional autonomy (the ability to act as one wishes). The liberal-individualist account of autonomy over-emphasizes physical independence and does not sufficiently recognize the inter-dependency of all people, including those with disabilities. An ethic of care, complementary to the principle of respect for autonomy, should guide the development of rehabilitation strategies to enhance individual autonomy and participation in daily living. For rehabilitation, this entails an attentive attitude, maximizing opportunities for informed choices, taking full account of each person's preferences, needs and social contexts. CONCLUSIONS: Autonomy is central to client-centred rehabilitation since it is a pre-requisite for effective participation. It is suggested that autonomy, conceived as a basis for participation, is the ultimate aim of rehabilitation.

Psychometric properties of the Impact on Participation and Autonomy Questionnaire.

OBJECTIVE: To examine the homogeneity, test-retest reliability, construct validity, and concurrent validity of the Impact on Participation and Autonomy Questionnaire (IPAQ). DESIGN: Cross-sectional study with a test-retest subsample. PATIENTS: One hundred twenty-six persons from 5 diagnostic groups recruited from the outpatients clinics of 2 rehabilitation centers and the rehabilitation department of an academic hospital. INTERVENTIONS: The IPAQ and 3 other self-administered questionnaires (Sickness Impact Profile [68-item version], London Handicap Scale [LHS], Medical Outcome Study Short-Form Health Survey). The IPAQ was completed twice by 75 respondents within approximately 2 weeks. RESULTS: The IPAQ addresses autonomy and participation in 5 domains: autonomy indoors, family role, autonomy outdoors, social relations, and work and educational opportunities. Cronbach's alpha for the several domains ranged between.81 and.91, indicating good homogeneity. On item level, weighted kappas ranged between.56 and.90. On domain level, the test-retest reliability of the IPAQ was good: intraclass correlation coefficients ranged between.83 and.91. Convergent validity was largely supported by the correlations between 4 domains of the LHS and the IPAQ. Discriminant validity was best demonstrated by low correlations between the IPAQ and 2 domains of the LHS representing theoretically different constructs. CONCLUSION: The IPAQ is a reliable and valid instrument for assessing autonomy and participation in chronic disorders. Its responsiveness requires further study.

The development of a handicap assessment questionnaire: the Impact on Participation and Autonomy (IPA).

OBJECTIVE: To report on the feasibility and psychometric properties in terms of homogeneity and construct validity of a newly developed handicap questionnaire focusing on person-perceived handicaps: the Impact on Participation and Autonomy (IPA). DESIGN: Cross-sectional. SETTING, subjects and outcome measure: One hundred consecutive individuals from the outpatient clinic of the department of rehabilitation of an academic hospital administered the new questionnaire IPA. RESULTS: The results show good homogeneity and construct validity of the IPA. Factor analysis showed that the scale consists of four factors, explaining 68% of the total variance: social relationships, autonomy in self-care, mobility and leisure, and family role. Homogeneity of the four subscales was considered good, Cronbach's alpha ranged from 0.84 (family role) to 0.87 (social relationships). Feasibility in terms of the number of missing values and administration time needed was satisfactory. CONCLUSION: The first results suggest that the IPA promises to be a useful handicap questionnaire. Further research is needed to establish test-retest reliability, convergent validity and responsiveness to change.

Handicap questionnaires: what do they assess?

BACKGROUND AND PURPOSE: There is an increasing need to get insight into the social and societal impact of chronic conditions on a person's life, i.e. person-perceived handicap. The purpose of this study is to report how current handicap questionnaires assess handicap. METHOD: A literature search using both Medline and the database of the Dutch Institute of Allied Health Professions (NPi) was conducted for handicap questionnaires. Questionnaires were included if addressing handicaps or life roles, environmental influences and social consequences of a disease. Excluded were questionnaires focusing on only impairments, disabilities or quality of life. RESULTS AND CONCLUSION: 20 questionnaires were identified. Handicap is not uniformly defined in these questionnaires. Based on different concepts, the various questionnaires encompass different domains and different aspects are emphasized in similar domains. Fourteen questionnaires assess society-perceived handicaps, and do not address the life roles, care needs or individual problem-experience. Six questionnaires are to some extent person-perceived, but a generic person-perceived handicap questionnaire could not be identified. It is concluded that development of a generic person-perceived handicap questionnaire is essential for adequate assessment of needs, outcome, and relevance of rehabilitation interventions from the individual's point of view.