Experiences of patients with intellectual disabilities and carers in GP health information exchanges: a qualitative study

Abstract

There is considerable HIE potential in patients themselves, as well as in their network, although many barriers have to be overcome to profit from this. GP practices are recommended to adjust consultations and communication practices and to facilitate deployment of the patient's network, while still considering patient autonomy.

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

“…Participants with DS, parents and support staff reported that PDS generally needed support deciding about visiting a doctor, making appointments with healthcare professionals, communicating during consultations, and sharing health or treatment information with (other) healthcare professionals, support staff, parents or other relatives. This is in line with literature on adults with intellectual disability in primary care (Mastebroek et al, ). When PDS were living with their parents, parents offered this support.…”

“…Parents expressed worries such as “Does support staff notice symptoms of my son/daughter in time?” and “What will happen with my son/daughter when I die?” especially when their child would soon be leaving home or when parents were old. Parents and support staff agreed that support staff did not have a high level of (DS‐specific) medical knowledge, which is consistent with the literature (Mastebroek et al, ).…”

“…First, it is increasingly acknowledged that patients should be seen and approached as part of a family system, in which all members collaborate with healthcare professionals in order to tailor health care to the needs and abilities of the patient and his/her family (Kyrkou, ; Rawson & Moretz, ). For PDS, this system may involve parents and support staff, all playing a significant role in the lives of people with intellectual disability including DS (Mastebroek, Naaldenberg, van den Driessen Mareeuw, Lagro‐Janssen, & van Schrojenstein Lantman‐de Valk, ). Second, parents and support staff may complement PDS' views on healthcare quality or may function as proxies for PDS who are not able to verbally express themselves.…”

Does risk and urgency of requested out-of-hours general practitioners care differ for people with intellectual disabilities in residential settings compared with the general population in the Netherlands? A cross-sectional routine data-based study

“… 9 These uncertainties may be adding to difficulties in the exchange of health information between carers and GPs and GP practices not being fit to the consultation and communication needs of people with ID. 29 30 Good practice depends on the knowledge, and flexibility of individual carers and healthcare professionals, which has been shown to lead to reasonable adjustments being initiated random throughout organisations. 31 More insight into the nature of out-of-hours primary care requests will help to appoint reasonable adjustments that are structural to address avoidable care, make out-of-hours primary care better accessible and effectively manage needs of people with ID at GP cooperatives.…”

General practitioners' and primary care nurses' care for people with disabilities: quality of communication and awareness of supportive services

“…These results were also underpinned by Mastebroek et al Moreover, their findings highlighted the importance of a personal connection with care professionals. 43 In order to enable PDs to engage in their care, primary-care professionals should invest in their therapeutic relationship with patients (with a disability). 9 , 44 , 45 …”