دورية أكاديمية
أعرض في EDS

Care needs of chronically ill patients with intellectual disabilities in Dutch general practice: patients' and providers' perspectives.

التفاصيل البيبلوغرافية
العنوان: Care needs of chronically ill patients with intellectual disabilities in Dutch general practice: patients' and providers' perspectives.
المؤلفون: van den Bemd M; Department of Primary and Community Care, Radboud University Medical Centre, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, The Netherlands. milou.vandenbemd@radboudumc.nl., Koks-Leensen M; Department of Primary and Community Care, Radboud University Medical Centre, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, The Netherlands., Cuypers M; Department of Primary and Community Care, Radboud University Medical Centre, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, The Netherlands., Leusink GL; Department of Primary and Community Care, Radboud University Medical Centre, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, The Netherlands., Schalk B; Department of Primary and Community Care, Radboud University Medical Centre, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, The Netherlands., Bischoff EWMA; Department of Primary and Community Care, Radboud University Medical Centre, Geert Grooteplein Zuid 10, Nijmegen, 6525 GA, The Netherlands.
المصدر: BMC health services research [BMC Health Serv Res] 2024 Jun 14; Vol. 24 (1), pp. 732. Date of Electronic Publication: 2024 Jun 14.
نوع المنشور: Journal Article
اللغة: English
بيانات الدورية: Publisher: BioMed Central Country of Publication: England NLM ID: 101088677 Publication Model: Electronic Cited Medium: Internet ISSN: 1472-6963 (Electronic) Linking ISSN: 14726963 NLM ISO Abbreviation: BMC Health Serv Res Subsets: MEDLINE
أسماء مطبوعة: Original Publication: London : BioMed Central, [2001-
مواضيع طبية MeSH: Intellectual Disability*/therapy , Intellectual Disability*/psychology , General Practice* , Qualitative Research* , Focus Groups*, Humans ; Chronic Disease/therapy ; Male ; Netherlands ; Female ; Middle Aged ; Adult ; Aged ; Health Services Needs and Demand ; Needs Assessment ; Interviews as Topic ; Pulmonary Disease, Chronic Obstructive/therapy ; Diabetes Mellitus, Type 2/therapy ; Asthma/therapy
مستخلص: Background: To reduce the impact of chronic diseases (cardiovascular disease, diabetes mellitus type 2, and chronic lung disease (asthma or chronic obstructive pulmonary disease (COPD)), it is imperative that care is of high quality and suitable to patients' needs. Patients with intellectual disabilities (ID) differ from the average patient population in general practice because of their limitations in adaptive behaviour and intellectual functioning, and concomitant difficulties recognising and reacting to disease symptoms, proactively searching health information, and independently managing diseases effectively. Because of these differences, information on their care needs is essential for suitable chronic disease management (CDM). Inadequate recognition of the care needs of this vulnerable population may hamper the harmonisation of evidence-based and person-centred care, compounded by issues such as stigma, misconceptions, and diagnostic overshadowing. This study therefore aimed to explore the needs of patients with ID from perspectives of both patients and of healthcare providers (HCPs) in the context of CDM in general practice.
Methods: This qualitative study recruited patients with ID for face-to-face individual interviews and HCPs for focus groups. With the Chronic Care Model as the underlying framework, semi-structured interviews and focus-group guides were defined to explore patients' care needs and HCPs' perspectives. All interviews and focus groups were audio-recorded and transcribed verbatim. Using Atlas.ti software, data were analysed using reflexive thematic analysis.
Results: Between June and September 2022, 14 patients with ID and cardiovascular disease, diabetes mellitus type 2, and/or asthma/COPD were interviewed; and 32 general practitioners and practice nurses participated in seven focus groups. We identified six care needs underpinning suitable CDM: trusting relationship between patient and HCP; clear expectations about the CDM process; support in disease management; directive decision-making; support in healthy lifestyle; accessible medical information.
Conclusions: This vulnerable patient population has complex care needs that must be acknowledged for suitable CDM. Although HCPs largely recognise these needs, organisational factors and lack of training or experience with patients with ID hamper HCPs' ability to fully adjust care provision to these needs. Access to, and knowledge of, easy-language information on chronic diseases and communication guidelines could aid HCPs to facilitate patients in managing their diseases more adequately.
(© 2024. The Author(s).)
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معلومات مُعتمدة: 329574 Ministerie van Volksgezondheid, Welzijn en Sport; 329574 Ministerie van Volksgezondheid, Welzijn en Sport; 329574 Ministerie van Volksgezondheid, Welzijn en Sport; 329574 Ministerie van Volksgezondheid, Welzijn en Sport; 329574 Ministerie van Volksgezondheid, Welzijn en Sport; 329574 Ministerie van Volksgezondheid, Welzijn en Sport; 641001100 Academic Collaborative Centers for Intellectual Disability of the Netherlands Organisation for Health Research and Development; 641001100 Academic Collaborative Centers for Intellectual Disability of the Netherlands Organisation for Health Research and Development; 641001100 Academic Collaborative Centers for Intellectual Disability of the Netherlands Organisation for Health Research and Development; 641001100 Academic Collaborative Centers for Intellectual Disability of the Netherlands Organisation for Health Research and Development; 641001100 Academic Collaborative Centers for Intellectual Disability of the Netherlands Organisation for Health Research and Development
فهرسة مساهمة: Keywords: Cardiovascular disease; Chronic disease; Chronic obstructive pulmonary disease; Delivery of healthcare; Diabetes mellitus; Disease management; General practice; Intellectual disability
تواريخ الأحداث: Date Created: 20240614 Date Completed: 20240615 Latest Revision: 20240618
رمز التحديث: 20240618
مُعرف محوري في PubMed: PMC11177393
DOI: 10.1186/s12913-024-11155-0
PMID: 38877510
قاعدة البيانات: MEDLINE
الوصف
تدمد:1472-6963
DOI:10.1186/s12913-024-11155-0