Dataset Information

Validation of an instrument to assess informal caregivers' perceptions about the delivery of patient-centred care to people with intellectual disabilities in residential settings.

ABSTRACT:

Background

Validated instruments are needed to assess the delivery of patient-centred care (PCC) to people with intellectual disabilities (PWIDs) needing 24-h care in residential settings. Eight dimensions of PCC have been identified: taking patients' preferences into account; access to care; emotional support; physical comfort; information and education; involvement of family and friends; coordination of care; and continuity and secure transition. Objective of this study is to validate an instrument to assess these eight PCC dimensions among informal caregivers of PWIDs in residential settings (institutional settings as well as group homes in the community). The original 24-item instrument was developed and validated among professionals providing care to PWIDs.

Methods

This study was conducted in a disability care centre in the Netherlands. All informal caregivers of PWIDs living in institutional settings or group homes in the community in need of 24-h care were invited to participate (n?=?941). The response rate was 31% (n?=?289). We tested the instrument using structural equation modelling, and examined its validity and reliability.

Results

Confirmatory factor analyses revealed good indices of fit and overall internal consistency, as represented by Cronbach's alpha values. All eight dimensions of PCC were related positively to satisfaction with care (all p???0.001). As expected, informal caregivers were less critical of PCC and its underlying dimensions, except for information and education, than were professionals working in the same disability care centre.

Conclusions

The psychometric properties of the 24-item PCC instrument for informal caregivers (PCC-IC) were satisfactory, indicating that the PCC-IC is valid and reliable for the assessment of the eight dimensions of PCC among informal caregivers of PWIDs in residential settings.

SUBMITTER: Cramm JM

PROVIDER: S-EPMC6657207 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Validation of an instrument to assess informal caregivers' perceptions about the delivery of patient-centred care to people with intellectual disabilities in residential settings.

Cramm Jane Murray JM Nieboer Anna Petra AP

BMC health services research 20190724 1

<h4>Background</h4>Validated instruments are needed to assess the delivery of patient-centred care (PCC) to people with intellectual disabilities (PWIDs) needing 24-h care in residential settings. Eight dimensions of PCC have been identified: taking patients' preferences into account; access to care; emotional support; physical comfort; information and education; involvement of family and friends; coordination of care; and continuity and secure transition. Objective of this study is to validate ...[more]

PMID: 31340813

Similar Datasets

Project description:ObjectivesTo explore characteristics of sexual abuse within residential settings for people with an intellectual disability and to map out measures undertaken and improvement plans made by healthcare organisations after sexual abuse.DesignDescriptive analysis of reports about sexual violence against persons with an intellectual disability submitted to the Dutch Health and Youth Care Inspectorate by healthcare organisations.SettingResidential settings for people with an intellectual disability in The Netherlands.Selection186 incident reports submitted to the Inspectorate between January 2017 and December 2019 were included.Results125 incident reports concerned sexual abuse by fellow clients and 61 reports concerned sexual abuse by professionals. Client perpetrators were predominantly male whereas almost 30% of the abusing professionals were female. The majority of the perpetrating professionals were unlicensed professionals. Clients who committed sexual abuse were mostly relocated to another residential setting. Most healthcare organisations invested in education and training for employees instead of improving the sexual education programme for clients after an incident of sexual abuse. If there was a strong suspicion of sexual abuse by a professional, resignation followed in most cases. In just two cases, the perpetrating professional was reported to a warning registry.ConclusionsA small amount of the perpetrating professionals held a licensed profession, which makes it challenging to address this form of sexual abuse through healthcare regulation. It raises the question why warning registries are not engaged more often after alleged sexual abuse. Constantly relocating abusing clients might endanger the (sexual) safety of clients in these new environments. Previous literature suggests that adequate sexual education regarding social skills and sexual behaviour is very effective for the majority of clients who commit sexual abuse. Healthcare organisations could take up a more prominent role in this to ensure safety for their own clients and for clients residing elsewhere.

Project description:BackgroundWeb-based peer support interventions have shown promise in reducing social isolation and social support deficits among informal caregivers, but little research has examined how caregivers use and perceive these interventions.ObjectiveIn this study, we examined utilization and perceptions of a Web-based social support intervention for informal caregivers of wounded, ill, and injured United States military service members and veterans.MethodsThis was a mixed-methods study that used quantitative survey data and qualitative data from focus groups and interviews with informal caregivers enrolled in a Web-based peer support intervention to explore their use and perceptions of the intervention. The intervention was delivered via a website that featured interest groups organized around specific topics, webinars, webchats, and messaging functionality and was moderated by professionally trained peers. This study occurred in the context of a quasi-experimental outcome evaluation of the intervention, where intervention participants were compared with a group of military caregivers who were not enrolled in the intervention.ResultsSurvey findings indicated that caregivers used the website infrequently, with 60.7% (128/211) visiting the website once a month or less, and passively, with a minority (32/144, 22.2%) of users (ie, those who had visited the website at least once during the past 3 months, N=144) posting comments or links to the network. Nonetheless, most users (121/144, 84.0%) endorsed moderate or greater satisfaction with the website on the survey, and focus group and interview participants reported benefiting sufficiently from passive use of the website (eg, reading posts). Quantitative and qualitative findings suggested that users viewed the website primarily as a source of informational support. Among 63.2% (91/144) of users who completed the survey, the most commonly reported network-related activity was obtaining information from the network's resource library, and focus group and interview participants viewed the network primarily as an informational resource. Focus group and interview participants expressed an unmet need for emotional support and the desire for a more personal touch in the forms of more active engagement with other caregivers in the network and the creation of local, in-person support groups for caregivers.ConclusionsThese findings suggest that Web-based peer support interventions may lend themselves better to the provision of informational (vs emotional) support and may need to be supplemented by in-person peer support groups to better meet caregivers' needs for emotional support.

Dataset Information

Validation of an instrument to assess informal caregivers' perceptions about the delivery of patient-centred care to people with intellectual disabilities in residential settings.

Background

Methods

Results

Conclusions

Publications

Validation of an instrument to assess informal caregivers' perceptions about the delivery of patient-centred care to people with intellectual disabilities in residential settings.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets