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Background  Earlier research has distinguished five domains of Quality of life (QoL) for people with ID: material well‐being, development and activity, physical well‐being, social well‐being, and emotional well‐being. We investigated parents' perspectives on these domains and QoL for children and young adults with ID and hypothesized that parents' well‐being would be a predictive factor in QoL of their children with ID.Methods  Our longitudinal study administered questionnaires to parents at T0 (n = 147) and T1 (n = 108). The inclusion criteria were: (i) the child's age 0–24 years and (ii) the child's intellectual disability (IQ < 70 or IQ < 85 in combination with behavioural problems).Results  Social well‐being of parents (P ≤ 0.001), changes in parents' social well‐being (P ≤ 0.01) and changes in children's social well‐being (P ≤ 0.05) were strong predictors of QoL for children with ID. Emotional well‐being of children with ID (P ≤ 0.01), changes in children's emotional well‐being (P ≤ 0.01) and changes in emotional well‐being of parents (P ≤0.05) also predicted QoL of children with ID. Material well‐being of parents, and health, development and activity of the children were not predictors.Conclusion  Our study revealed that predictors of QoL in children and young adults with ID occurred in the following domains: physical well‐being (children), social well‐being (parents and children) and emotional well‐being (parents and children).

We investigated the role of power in public governance using a Foucauldian conceptualization of power, i.e., power is produced by a range of techniques as diverse as language and measuring. We draw on an evaluation study of a quality improvement collaborative, in which different mental health care organizations were encouraged to improve their care in a structured way. We analyzed how the different actors involved in the collaborative were governed and came to govern themselves differently. Measurement instruments were an example of a dominant mechanism by which actors at different levels of the collaborative were governed: by accounting for improvements, introducing or strengthening a certain way of thinking about health care clients, and changing how clients thought about and acted upon themselves. We argue that the focus on consequences of governing techniques is fruitful for studying governmentality and leads to new research questions in the context of public policy analyses. Adapted from the source document.

AbstractPerson‐centered care (PCC) delivery and co‐creation of care (establishing productive patient‐professional interaction) are expected to lead to better patient outcomes. Given the prominent role of informal caregivers in care delivery processes to persons with intellectual disabilities (PWID), they are expected to benefit from person‐centered care (PCC) and co‐creation of care as well. This study aims to identify the relationship between PCC, co‐creation of care and outcomes among informal caregivers of PWID. A cross‐sectional survey was conducted in 2015 among informal caregivers of PWID (45.8% parents, 44.1% siblings, 10.1% other family member). All PWID were living in residential homes of a long‐term care organization in the Eastern part of the Netherlands. For every PWID, the most important informal caregiver was invited to participate. Nine hundred and forty‐one invitations were sent out and 289 of them responded (31% response rate). Mean age of informal caregivers was 61.80 (SD 11.21; range 23–90) years old. About half of the respondents (55%) were female and 23% were single. Most of the respondents (83%) were providing informal care for more than 10 years and 29% provided informal care for 8 hours per week or more. Correlation analyses indicated that PCC and co‐creation of care were positively related to informal caregivers' satisfaction with care and their own well‐being. Regression analyses showed that PCC is associated with satisfaction with care (β = 0.60, p < 0.001) and well‐being (β = 0.22, p < 0.01) while controlling for background characteristics. Relational co‐creation was also positively associated with satisfaction with care (β = 0.15, p < 0.01) and well‐being (β = 0.20, p < 0.01). This study provided the first empirical evidence that PCC and co‐creation of care matter for satisfaction with care and the well‐being of informal caregivers of PWID.

AbstractBackgroundWe examined the influence of the organizational environment on challenging behaviour in people with intellectual disabilities to increase understanding of the quality of support services for people with intellectual disabilities.MethodTwenty‐one professionals and managers from four specialized Dutch disability service organizations were interviewed. Data were analysed with a grounded theory approach, using Bronfenbrenner's ecological theory as a sensitizing frame.ResultsThe organizational environment (i.e., vision, values, sufficient resources) is related via the support service (i.e., providing stability, constant awareness) to residents' challenging behaviour and is also linked directly to challenging behaviour (e.g., living environment, values). Organizations are restricted by national regulations, negative media attention and changing societal values, which negatively influence quality of support.ConclusionsThe creation of a supportive organizational environment for staff, who in turn can provide quality support services to residents with demanding care needs, was found to prevent challenging behaviour in people with intellectual disabilities.