Mieke Cardol

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.

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.

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

BackgroundIn 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 in1987 and in 2001.MethodsWe 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.ResultsWithin 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.ConclusionBy 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.

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.

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 Arnsteins 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.

A consensus statement on how to conduct inclusive health research: Consensus statement on 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.

Participatieproblemen chronisch zieken en gehandicapten bespreekbaar

SamenvattingDe Wet maatschappelijke ondersteuning (Wmo), die in januari 2007 is ingegaan, heeft als doel om de participatie van alle burgers in de samenleving te bevorderen. Participatie verwijst naar sociale contacten en vrijetijdsbesteding, het hebben van werk of volgen van een opleiding. Het is bekend dat veel mensen met een chronische ziekte of lichamelijke beperking minder participeren dan mensen zonder ziekte of beperking. Willen chronisch zieken en gehandicapten hierover praten met hun huisarts?

No-claimregeling treft kwetsbare groepen

No-claimregeling uitgesteld, maar niet van de baan De regering heeft recent besloten om de no-claimregeling voor het gebruik van huisartsenzorg niet in 2005 in te voeren. Maar helemaal van de baan is het niet. In 2005 neemt de regering opnieuw een beslissing over deze regeling. Bedoeld effect van de regeling is dat mensen zich (meer) bewust worden van hun zorggebruik. Het Ministerie van VWS verwijst naar ‘financiële verantwoordelijkheid voor burgers’. Hoe zal deze regeling uitpakken voor verschillende groepen in de samenleving als bezoeken aan de huisarts meetellen?

Gezinsgelijkenis in contactfrequentie met de huisartsenpraktijk: een retrospectief cohortonderzoek

Inleiding Het gedachtegoed van de gezinsgeneeskunde is op de achtergrond geraakt; er wordt nauwelijks nog gepubliceerd over de invloed van het gezin op het consultgedrag van individuen. Mogelijk heeft dit te maken met maatschappelijke veranderingen of veranderingen binnen gezinnen. In dit artikel onderzoeken wij in hoeverre het gezin nog steeds van invloed is op individuele contactfrequenties met de huisartsenpraktijk. Methode Retrospectief cohortonderzoek. We maakten gebruik van gegevens van de Tweede Nationale Studie (2001, NS2). Hierin werden alle patientcontacten met de huisarts gedurende een jaar geregistreerd in 96 praktijken. We includeerden 42.262 gezinnen met kinderen tussen de 2-21 jaar. Multiniveau-analyse werd gebruikt om de relatie tussen individu, gezin en contactfrequentie met de huisartsenpraktijk te analyseren. Resultaten Na correctie voor leeftijd en geslacht kon 22% van de variatie in contactfrequenties worden toegeschreven aan gezinsinvloeden. Dit betekent dat contactfrequenties van gezinsleden op elkaar lijken en dat er verschillen zijn tussen de gezinnen. Bijna 6% van de variatie in contactfrequenties verwijst naar verschillen tussen huisartsenpraktijken en 73% van de variatie verwijst naar verschillen tussen personen. De sterkste correlaties in contactfrequenties vonden we tussen moeders en dochters en tussen kinderen onderling. Conclusie De gelijkenis in contactfrequenties in gezinnen is van belang voor de praktijk van alledag. De resultaten van dit onderzoek benadrukken dat het gezin niet over het hoofd kan worden gezien als belangrijke context voor hulpzoekgedrag.