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Employee

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Hille Voss, PhD
Researcher Care Demand of the Chronically Ill and Disabled; project coordinator Panel Living Together

Employee

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Anke de Veer, PhD
Senior researcher Nursing Care and Elderly Care; coordinator Nivel National Nursing Staff Panel

Employee

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Hennie Boeije, PhD
Coordinator research program Care Demand of the Chronically Ill and Disabled

Publication

| Oosterveld, M., Boeije, H. Ervaringen en uitdagingen van mensen met een licht verstandelijke beperking tijdens het zoeken van medische hulp van hun huisarts: een interviewstudie. Nederlands tijdschrift voor Artsen voor Verstandelijk Gehandicapten: 2021, 39(2), p. 89-93

… huisarts’ (www.naarjehuisarts.nl). Background People with intellectual disabilities (ID) often have low health literacy as a result … (www.naarjehuisarts.nl). … Background People with intellectual disabilities (ID) often have low health literacy …

Publication

| Voss, H. Advance Care Planning in palliative care for people with intellectual disabilities. Utrecht: Nivel, 2021.

… Advance Care Planning in palliative care for people with intellectual disabilities. Utrecht: Nivel, 2021. … Advance Care Planning in palliative care for people with intellectual disabilities. … Advance care planning … Mensen …

Publication

| Voss, H., Francke, A.L., Veer, A.J.E. de. Implementation and sustainment of palliative care innovations within organizations for people with intellectual disabilities: a multi-method evaluation. Disability and Health Journal: 2021, 14(2), 101049

… Background Providing palliative care for people with intellectual disabilities (ID) is challenging and professionals caring for … … Background Providing palliative care for people with intellectual disabilities (ID) is challenging and …

Publication

| Voss, H., Vogel, A.G.F.M., Wagemans, A.M.A., Francke, A.L., Metsemakers, J.F.M., Courtens, A.M., Veer, A.J.E. de. Development, implementation, and evaluation of an Advance Care Planning program for professionals in palliative care of people with intellectual disability. Intellectual and Developmental Disabilities: 2021, 59(1), p. 39-54

… aim was to improve ACP in palliative care for people with intellectual disability (ID). The program was based on ten … aim was to improve ACP in palliative care for people with intellectual disability (ID). The program was based on ten … intellectual disability. Intellectual and Developmental Disabilities : 2021, 59(1), p. 39-54 … Development, …

Publication

| Oosterveld-Vlug, M., Oldenkamp, M., Mastebroek, M., Boeije, H. What difficulties do people with mild intellectual disabilities experience when seeking medical help from their GP? A qualitative study. Journal of Applied Research in Intellectual Disabilities: 2020, 34(1), 178-189

… Background People with intellectual disabilities often have low health literacy as a result of … study was to explore the difficulties Dutch people with intellectual disabilities experience during the process of …

Publication

| Scheffelaar, A., Bos, N., Jong, M. de, Triemstra, M., Dulmen, S. van, Luijkx, K. Lessons learned from participatory research to enhance client participation in long-term care research: a multiple case study. Research Involvement and Engagement: 2020, 6(27), 17 p.

… people, people with mental health problems or people with intellectual disabilities. Results A good working environment and a good … people, people with mental health problems or people with intellectual disabilities. Results A good working environment …

Publication

| Scheffelaar, A., Bos, N., Triemstra, M., Jong, M. de, Luijkx, K., Dulmen, S. van. Qualitative instruments involving clients as co-researchers to assess and improve the quality of care relationships in long-term care: an evaluation of instruments to enhance client participation in quality research. BMJ Open: 2020, 10(2), 14 p.

… adults, people with mental health problems and people with intellectual disabilities. A total of 140 respondents participated in this … adults, people with mental health problems and people with intellectual disabilities. A total of 140 respondents …

Publication

| Watson, J., Voss, H., Bloomer, M.J. Placing the preferences of people with profound intellectual and multiple disabilities at the center of end-of-life decision making through storytelling. Research and Practice for Persons with Severe Disabilities: 2019, 44(4), p 267-279

… on decision-making support for people with profound intellectual and multiple disability (PIMD) at the … on decision-making support for people with profound intellectual and multiple disability (PIMD) at the … of people with profound intellectual and multiple disabilities at the center of end-of-life decision making …

Publication

| Voss, H., Vogel, A., Wagemans, A.M.A., Francke, A.L., Metsemakers, J.F.M., Courtens, A.M.C., Veer, A.J.E. de. What is important for advance care planning in the palliative phase of people with intellectual disabilities? A multi-perspective interview study. Journal of Applied Research in Intellectual Disabilities: 2020, 33(2), 160-171

… for future care. Research about ACP for people with intellectual disabilities (ID) is limited. This study describes what is … important for ACP in the palliative phase of people with intellectual disabilities. Method In‐depth interviews were …

Publication

| Voss, H., Vogel, A., Wagemans, A.M.A., Francke, A.L., Metsemakers, J.F.M., Courtens, A.M., Veer, A.J.E. de. Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews. Journal of Intellectual Disability Research: 2019, 63(10), p. 1262-1272

… is to explore how ACP takes place in cases of people with intellectual disabilities (ID). Method Medical files were analysed, and … is to explore how ACP takes place in cases of people with intellectual disabilities (ID). Method Medical files were …

Publication

| Scheffelaar, A., Hendriks, M., Bos, N., Luijkx, K., Dulmen, S. van. Determinants of the quality of care relationships in long-term care: a participatory study. BMC Health Services Research: 2019, 19(389)

… frail, people with mental health problems and people with intellectual disabilities. There is little clarity about how generic and … frail, people with mental health problems and people with intellectual disabilities. There is little clarity about how …

Publication

| Frankena, T.K., Naaldenberg, J., Bekkema, N., Schrojenstein Lantman-de Valk, H.J.M. van, Cardol, M., Leusink, G. An exploration of the participation of people with intellectual disabilities in research: a structured interview survey. Journal of Applied Research in Intellectual Disabilities: 2018, 31(5), 942-947

… 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 …

Publication

| Scheffelaar, A., Bos, N., Hendriks, M., Dulmen, S. van, Luijkx, K. Determinants of the quality of care relationships in long-term care: a systematic review. BMC Health Services Research: 2018, 18(903)

… with mental health problems and people with physical or intellectual disabilities. Included studies concern clients receiving … with mental health problems and people with physical or intellectual disabilities. Included studies concern clients …

Publication

| Scheffelaar, A., Hendriks, M., Bos, N., Luijkx, K.G., Dulmen, S. van. Protocol for a participatory study for developing qualitative instruments measuring the quality of long-term care relationships. BMJ Open: 2018, 8(11), e022895

… people with mental health problems and people with intellectual disabilities. Using a participatory research method, we will … people with mental health problems and people with intellectual disabilities. Using a participatory research …

Publication

| Dörenberg, V.E.T., Veer, A.J.E. de, Francke, A.L., Embregts, P.J.C.M., Nieuwenhuizen, M. van, Frederiks, B.J.M. Applying restrictive measures in the care of adolescents with mild intellectual disabilities: attitudes of support staff and policy implications. Journal of Policy and Practice in Intellectual Disabilities: 2018, 15(1), 26-35

… measures are widely used on adolescents with mild intellectual disabilities. In the Netherlands, restrictive measures are … practices are used in the care of adolescents with mild intellectual disabilities while also exploring the attitudes …

Publication

| Boer, D. de, Hofstede, J.M., Veer, A.J.E. de, Raijmakers, N.J.H., Francke, A.L. Relatives’ perceived quality of palliative care: comparisons between care settings in which patients die. BMC Palliative Care: 2017, 16(41)

… in another institution (e.g. institutions for people with intellectual disabilities or mental healthcare institutions). The … in another institution (e.g. institutions for people with intellectual disabilities or mental healthcare institutions). …

Publication

| Heutmekers, M., Naaldenberg, J., Frankena, T.K., Smits, M., Leusink, G.L., Assendelft, W.J.J., Schrojenstein Lantman-de Valk, H.M.J. van. After-hours primary care for people with intellectualdisabilities in The Netherlands—Current arrangements andchallenges. Research in Developmental Disabilities: 2016, 59(1), 1-7

… organisation of after-hours primary care for peoplewith intellectual disabilities (ID), and mainstream care is not self-evidently … in The Netherlands—Current arrangements andchallenges. … intellectual disabilities …

Publication

| Voss, H., Vogel, A., Wagemans, A.M.A., Francke, A.L., Metsemakers, J.F.M., Courtens, A.M., Veer, A.J.E. de. Advance care planning in palliative care for people with intellectual disabilities: a systematic review. Journal of Pain and Symptom Management: 2017, 54(6), 938-960

… use and effects of ACP in palliative care for people with intellectual disabilities (ID). Methods Four databases were searched … Advance care planning in palliative care for people with intellectual disabilities: a systematic review. Journal of …

Publication

| Voss, H., Vogel, A., Wagemans, A.M.A., Francke, A.L., Metsemakers, J.F.M., Courtens, A.M., Veer, A.J.E. de. Advance care planning in palliative care for people with intellectual disabilities: a systematic review. European Journal of Palliative Care: 2017 224. Abstract. In: Abstractbook 15th World congress of the European associationn for Palliative care: Progressing Palliative Care. 18-20 mei 2017, Madrid.

… Advance care planning in palliative care for people with intellectual disabilities: a systematic review. European Journal of … … Advance care planning in palliative care for people with intellectual disabilities: a systematic review. … Palliatieve …

Publication

| Bekkema, N. The challenge of caring together: end-of-life care for people with intellectual disabilities. Utrecht: NIVEL, 2016.

… of caring together: end-of-life care for people with intellectual disabilities. Utrecht: NIVEL, 2016. … The challenge of caring together: end-of-life care for people with intellectual disabilities. … Mensen met een verstandelijke …

Publication

| Tuffrey-Wijne, I., Wicki, M., Heslop, P., McCarron, M., Todd, S., Oliver, D., Veer, A. de, Ahlstöm, G., Schäper, S., Hynes, G., O'Farrell, J., Adler, J., Riese, F., Curfs, L. Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique. BMC Palliative Care: 2016, 15(36)

… around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of … for research priorities for palliative care of people with intellectual disabilities in Europe. Methods A two-day …

Publication

| Bekkema, N., Tuffrey-Wijne, I., Wagemans, A., Hertogh, C., Francke, A., Veer, A. de. Decision-making about the best place of palliative care for people with intellectual disabilities: a guide for care staff and healthcare professionals providing palliative care for people with intellectual disabilities. Utrecht: NIVEL, 2015.

… about the best place of palliative care for people with intellectual disabilities: a guide for care staff and healthcare … professionals providing palliative care for people with intellectual disabilities. Utrecht: NIVEL, 2015. … …

Publication

| Bekkema, N., Veer, A.J.E. de, Hertogh, C.M.P.M., Francke, A.L. 'From activating towards caring': shifts in care approaches at the end of life of people with intellectual disabilities; a qualitative study of the perspectives of relatives, care-staff and physicians. BMC Palliative Care: 2015, 14(33)

… and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life care. This … and relatives increasingly have to deal with people with intellectual disabilities (ID) who are in need of end-of-life …

Publication

| Bekkema, N., Veer, A.J.E. de, Hertogh, C.M.P.M., Francke, A.L. Perspectives of people with mild intellectual disabilities on care relationships at the end of life: a group interview study. Palliative Medicine: 2016, 30(7), 625-633

… crucial in tailoring the end-of-life care of a person with intellectual disabilities (ID) to their needs. Yet, almost all studies on … crucial in tailoring the end-of-life care of a person with intellectual disabilities (ID) to their needs. Yet, almost …

Publication

| Bekkema, N., Veer, A.J.E. de, Wagemans, A.M.A., Hertogh, C.M.P.M., Francke, A.L. ‘To move or not to move’: a national survey among professionals on beliefs and considerations about the place of end-of-life care for people with intellectual disabilities. Journal of Intellectual Disability Research: 2015, 59(3), 226-237

… environment for end-of-life care for people with intellectual disabilities (ID). Method A survey questionnaire was composed … environment for end-of-life care for people with intellectual disabilities (ID). Method A survey questionnaire …

Publication

| Niemeijer, A.R., Depla, M., Hertogh, C., Frederiks, B., Francke, A. The use of surveillance technology in residential facilities for people with dementia or intellectual disabilities: a study among nurses and support staff. American Journal of Nursing: 2014, 114(12), 28-37

… in residential care facilities for people with dementia or intellectual disabilities is often promoted both as a solution to … in residential care facilities for people with dementia or intellectual disabilities, in order to explore the possible …

Publication

| Bekkema, N., Veer, A.J.E. de, Wagemans, A.M.A., Hertogh, C.M.P.M., Francke, A.L. Decision making about medical interventions in the end-of-life care of people with intellectual disabilities: a national survey of the considerations and beliefs of GPs, ID physicians and care staff. Patient Education and Counseling: 2014, 96(2), 204-209

… interventions in the end-of-life care for people with intellectual disabilities (ID). Methods: A survey questionnaire covering … interventions in the end-of-life care of people with intellectual disabilities: a national survey of the …