GPs’ opinions of health assessment instruments for people with intellectual disabilities: a qualitative study

Gijssel, E.J. Bakker-van; Hartman, Tim olde; Mareeuw, Francine van den Driessen; Dees, Marianne; Assendelft, W.J.J.; Valk, H.M. van Schrojenstein Lantman-de

doi:10.3399/bjgp16x688585

Cited by 14 publications

(37 citation statements)

References 30 publications

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“…Strikingly, little is known about the quality of DS‐specialised health care (van den Driessen Mareeuw, Hollegien, Coppus, Delnoij, & de Vries, ), let alone how it is appraised by people with DS (PDS) and their caregivers (Barelds, van de Goor, van Heck, & Schols, ; Kyrkou, ; Minnes & Steiner, ). Although a number of studies have addressed the assessment of health status and quality of life of people with intellectual disability and DS (Bakker‐van Gijssel et al, ; Graves et al, ; Kyrkou, ; van Schrojenstein Lantman‐de Valk, Linehan, Kerr, & Noonan‐Walsh, ), healthcare quality related to PDS has not been adequately researched (van den Driessen Mareeuw et al, ). Studies that do address quality in health care for PDS are traditionally conducted from a medical professional's perspective (Jensen & Davis, ; Jespersen, Michelsen, Holstein, Tjørnhøj‐Thomsen, & Due, ; Phelps, Pinter, Lollar, Medlen, & Bethell, ).…”

Section: Introductionmentioning

confidence: 99%

Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration

Mareeuw

Coppus

Delnoij

et al. 2019

Research Intellect Disabil

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Background People with Down syndrome (PDS) have complex healthcare needs. Little is known about the quality of health care for PDS, let alone how it is appraised by PDS and their caregivers. This study explores the perspectives of PDS, their parents and support staff regarding quality in health care for PDS. Method The present authors conducted semi‐structured interviews with 18 PDS and 15 parents, and focus groups with 35 support staff members (of PDS residing in assisted living facilities) in the Netherlands. Results According to the participants, healthcare quality entails well‐coordinated health care aligned with other support and care systems, a person‐centred and holistic approach, including respect, trust and provider–patient communication adapted to the abilities of PDS. Conclusions Our findings may be used to improve health care for PDS, and provide insight into how health care could match the specific needs of PDS.

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Section: Introductionmentioning

confidence: 99%

Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration

Mareeuw

Coppus

Delnoij

et al. 2019

Research Intellect Disabil

View full text Add to dashboard Cite

show abstract

“…Other studies have shown that health assessments are cost‐effective (Cooper et al, ; Lennox et al, , ). In a focus group study by our research group, GPs pointed out that in order to deliver good care to this target population, they need tools, education and support (Bakker‐van Gijssel, Hartman, et al, ). A health assessment instrument with input from the person with intellectual disability and their caregivers can support GPs.…”

Section: Introductionmentioning

confidence: 99%

“Constructing a health assessment questionnaire for people with intellectual disabilities: A cognitive interview study”

Gijssel

Hartman

Assendelft

et al. 2019

Research Intellect Disabil

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Introduction:Health assessment instruments can help to raise awareness among general practitioners of specific health problems in people with intellectual disabilities (PID). The present authors developed a health assessment questionnaire using the cognitive interview technique (CI) to improve the comprehensibility. The utility of this approach to questionnaire development involving PID is assessed. Method:A qualitative approach using the CI was employed. The study included PID and their caregivers. The present authors interviewed 14 participants in 5 subsequent rounds. After each round, the questionnaire was adjusted until saturation was reached.Results: Three hundred and sixty three identified problems led to 316 changes to the questionnaire. Most problems (102) concerned the comprehension of the question, followed by problems in the "missing answer categories" and "inaccurate instruction" section. Conclusion:The comprehensible health assessment questionnaire can help PID to take an active role in communication with their GP. The use of CI helped to improve the questionnaire. CI is a usable and valuable procedure for PID. K E Y W O R D Scognitive interview, general practice, intellectual disability, primary health care, qualitative research, symptom assessment

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“…Unfortunately, GPs, playing a key role in healthcare for people (especially adults) with DS [48], were underrepresented. Despite extensive attempts, we were only able to include one GP, who could only participate in round one.…”

Section: Strengths and Limitationsmentioning

confidence: 99%

Capturing the complexity of healthcare for people with Down syndrome in quality indicators - a Delphi study involving healthcare professionals and patient organisations

Mareeuw

Coppus

Delnoij

et al. 2020

BMC Health Serv Res

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Background: Insight into quality of healthcare for people with Down Syndrome (DS) is limited. Quality indicators (QIs) can provide this insight. This study aims to find consensus among participants regarding QIs for healthcare for people with DS. Methods: We conducted a four-round Delphi study, in which 33 healthcare professionals involved in healthcare for people with DS and two patient organisations' representatives in the Netherlands participated. Median and 75percentiles were used to determine consensus among the answers on 5-point Likert-scales. In each round, participants received an overview of participants' answers from the previous round. Results: Participants agreed (consensus was achieved) that a QI-set should provide insight into available healthcare, enable healthcare improvements, and cover a large diversity of quality domains and healthcare disciplines. However, the number of QIs in the set should be limited in order to prevent registration burden. Participants were concerned that QIs would make quality information about individual healthcare professionals publicly available, which would induce judgement of healthcare professionals and harm quality, instead of improving it. Conclusions: We unravelled the complexity of capturing healthcare for people with DS in a QI-set. Patients' rights to relevant information have to be carefully balanced against providers' entitlement to a safe environment in which they can learn and improve. A QI-set should be tailored to different healthcare disciplines and information systems, and measurement instruments should be suitable for collecting information from people with DS. Results from this study and two preceding studies, will form the basis for the further development of a QI-set.

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GPs’ opinions of health assessment instruments for people with intellectual disabilities: a qualitative study

Cited by 14 publications

References 30 publications

Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration

Quality of health care according to people with Down syndrome, their parents and support staff—A qualitative exploration

“Constructing a health assessment questionnaire for people with intellectual disabilities: A cognitive interview study”

Capturing the complexity of healthcare for people with Down syndrome in quality indicators - a Delphi study involving healthcare professionals and patient organisations

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