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Support characteristics associated with the quality of life of people with profound intellectual and multiple disabilities; the perspective of parents and direct support staff
- Authors:
- PETRY Katja, MAES Bea, VLASKAMP Carla
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 4(2), June 2007, pp.104-110.
- Publisher:
- Wiley
The authors examined which support characteristics are associated with the quality of life (QOL) of people with profound intellectual and multiple disabilities (PIMD). The authors invited parents and direct support staff of people with PIMD to adopt the perspective of their child or the person with PIMD for whom they care. Some 76 parents and direct support staff of people with PIMD were interviewed, and to obtain data, transcripts were analyzed in-depth. The respondents mentioned: (1) characteristics with regard to the structure of the setting (physical environment, staff ratio, staff turnover, group size, and group composition); (2) characteristics with regard to the internal organization of the support (partnership, teamwork, interdisciplinary, and support planning); and (3) characteristics with regard to the support staff (experience, sensitive responsiveness, commitment and motivation, physical strength, knowledge and skills, and self-reflection). The respondents considered structural as well as operating features of the support setting to be important for the QOL of people with PIMD. The authors conclude that their main emphasis, however, was on the central role of direct support staff in supporting people with PIMD.
Parents with intellectual disabilities seeking professional parenting support: the role of working alliance, stress and informal support
- Authors:
- MEPPELDER Marieke, et al
- Journal article citation:
- Child Abuse and Neglect, 38(9), 2014, pp.1478-1486.
- Publisher:
- Elsevier
Delaying or refraining from seeking advice and support in difficult parenting situations is identified as an important risk factor for child abuse and neglect. This study tested whether the extent of delays in support seeking is associated with working alliance for parents with mild intellectual disabilities (MID) and whether the importance of working alliance may depend on parenting stress and availability of informal support. Delays in support seeking were measured as parental latency (time waited) to approach the support worker. This latency was assessed in the intended response to hypothetical situations (vignettes) and in the reported behavioural response to real life difficult parenting situations from the preceding weeks. Multiple regression analyses were conducted for testing main and interaction effects of predictors on latency for support seeking. Better quality of the working alliance was associated with shorter intended latency to seek support for parents with MID, if parents had little access to informal support. Higher parenting stress predicted a shorter latency for intended support seeking. Parental support seeking intentions were positively associated with support seeking behaviour. A good quality of the working alliance might be important to connect needs of parents with MID to resources that professional support can offer, in particular for the most vulnerable parents. Parental reluctance to seek professional support may be the result of a combination of risk and protective factors and is not always a sign of poor working alliance. Implications for risk assessment and support practice are discussed. (Edited publisher abstract)
How parents experience the quality of support: a survey in residential care
- Authors:
- LUIJKX Jorien, BRUG Annet ten, VLASKAMP Carla
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 10(1), 2013, pp.37-44.
- Publisher:
- Wiley
This study examined the views of parents and/or legal guardians on the quality of support provided to people with an intellectual disability (ID) in residential care in the Netherlands, in order to improve the partnership between parents/legal guardians and facilities. A questionnaire developed in close cooperation with parents specifically for this aim was sent to 1,785 households (parents and/or legal guardians) of clients in the Netherlands. Types of residential care included group homes, community living, and assisted living facilities, to more sheltered housing and institutional placements. The questionnaire consists of the following five subsections: daily care, housing, day services, leisure activities, and communication. A multiple regression analysis was performed to determine which factors contributed to the satisfaction of parents and/or legal guardians. The questionnaires returned (n = 1,058) showed that respondents rated the overall quality of support at an average grade of 7.3 out of 10. Small but mostly significant differences were found between the subsections. Special attention should be paid to the percentage of parents and/or legal guardians who gave unsatisfactory scores (10%) and the substantial percentage (25%) of parents and/or legal guardians that rated the quality of care only marginally satisfactory (grades 6–7). (Edited publisher abstract)
Longitudinal study of parents' impact on quality of life of children and young adults with intellectual disabilities
- Authors:
- CRAMM Jane M., NIEBOER Anna P.
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 25(1), January 2012, pp.20-28.
- Publisher:
- Wiley
Five domains of quality of life for people with intellectual disabilities have been identified through research: material well-being, development and activity, physical well-being, social well-being, and emotional well-being. This study investigated how parents' perspectives on these domains relate to quality of life for children and young adults with intellectual disabilities. Questionnaires were used to gather information from 147 parents of children with intellectual disabilities, recruited from 4 cities in the Netherlands, at the start of the study and about 6 months later. The article describes the methodology and analysis and presents the findings. It reports that the well-being scores of parents in several quality of life domains were significant predictors of quality of life of their children, with main predictors of quality of life among children and young people with intellectual disabilities being physical well-being (children), social well-being (parents and children) and emotional well-being (parents and children).
Psychological well-being of caregivers of children with intellectual disabilities: using parental stress as a mediating factor
- Authors:
- CRAMM J.M., NIEBOER A.P.
- Journal article citation:
- Journal of Intellectual Disabilities, 15(2), June 2011, pp.101-113.
- Publisher:
- Sage
- Place of publication:
- London
Parental stress has known negative affects on caregivers’ psychological well-being, and increases risk for children with disabilities being placed in the care of others. Acknowledgment of means to ease caregiving burdens should guide policymaking and will help to provide better and tailored support and intervention for the children. This study characterized caregivers of children with intellectual disabilities who were about to seek outside support and care, and identified the conditions under which psychological well-being and parental stress were affected using parental stress as a mediating factor. Participants were from four Dutch cities, and included 147 parents who needed outside care and support. Findings revealed that parental stress and the child’s depressive feelings strongly affected psychological well-being. Also, an indirect relation of restricted caregiver social activities through parental stress was found. The authors concluded that to protect psychological well-being of caregivers, support services should address depressive feelings among children with intellectual disabilities and help enable an increase in caregivers’ social activity.
Alleviating parenting stress in parents with intellectual disabilities: a randomized controlled trial of a video-feedback intervention to promote positive parenting
- Authors:
- HODES Marja W., et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 30(3), 2017, p.423–432.
- Publisher:
- Wiley
Background: Adapted parenting support may alleviate the high levels of parenting stress experienced by many parents with intellectual disabilities. Methods: Parents with mild intellectual disabilities or borderline intellectual functioning were randomised to experimental (n = 43) and control (n = 42) conditions. Parents in both groups received care-as-usual. The experimental group also received an adapted version of video-feedback intervention for positive parenting and learning difficulties (VIPP-LD). Measures of parenting stress were obtained pre-test, post-test and 3-month follow-up. Results: Randomisation to the experimental group led to a steeper decline in parenting stress related to the child compared to the control group (d = 0.46). No statistically significant effect on stress related to the parent's own functioning or situation was found. Conclusions: The results of the study suggest the feasibility of reducing parenting stress in parents with mild intellectual disability (MID) through parenting support, to the possible benefit of their children. (Edited publisher abstract)
Does the severity of disability matter? the opinion of parents about professional support in residential facilities
- Authors:
- LUIJKX Jorien, BRUG A.Ten, VLASKAMP C.
- Journal article citation:
- Child: Care, Health and Development, 42(1), 2016, pp.8-15.
- Publisher:
- Wiley
Researchers have shown that the characteristics of a person with an intellectual disability (ID), in particular the severity of the disability, are related to the outcomes of professional support. Hardly any studies have asked parents and/or legal guardians for their own opinion about the quality of support given to their child/family member with ID. Therefore, this study examined the relationship between the severity of a person's disability and the opinions voiced by the parents and/or other legal guardians of that person concerning several aspects of the quality of support received in residential care. (Publisher abstract)
Do they agree? How parents and professionals perceive the support provided to persons with profound intellectual and multiple disabilities
- Authors:
- JANSEN Suzanne L.G., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 43(4), 2018, pp.441-452.
- Publisher:
- Taylor and Francis
Background: The aim of this study was to explore agreements in the way parents of a person with profound intellectual and multiple disabilities and professionals perceive the support in terms of its family-centredness in order to gain a better understanding of their collaboration. Method: An adapted version of the Dutch Measure of Processes of Care was completed by 109 parents, and an adapted version of the Dutch Measure of Processes of Care for service providers was completed by 144 professionals. Agreements between parents and professionals were analysed using multilevel analysis. Results: In general, the parents and the professionals disagreed on occurrence and importance of both the Enabling and Partnership scale and the Respectful and Supportive Care scale. Conclusion: In order to deliver family-centred support, service providers should be aware that there are disagreements between the parents’ perception of what is important in the support provided and the perception of the professional. (Publisher abstract)
Choice processes and satisfaction with care according to parents of children and young adults with intellectual disability in the Netherlands
- Authors:
- NEIBOER Anna P., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 36(2), June 2011, pp.127-136.
- Publisher:
- Taylor and Francis
Quality information on care for people with intellectual disabilities has become available in the Netherlands in recent years. However, despite the expressed desire for access to information on care providers, use of the available information seems to fall short of expectations. There is limited information on the decision-making processes and on what influences it. This study was designed design to better understand the effects of providing decision-support information only (services/quality indicators) and providing a combination of information and personal decision-making support (counselling/peer meetings) on the choice process and satisfaction with care. The study population consisted of 147 parents who sought protected living arrangements, assisted daily activities, or both for their child. The form of support affected the choice process, but did not affect satisfaction with care. Decision-support information combined with personal decision-making support led to less frequent switching of care providers and to more satisfaction with choice information. The parents made limited use of online decision-support information, but did use decision counselling. It is concluded that this population is better supported with an intensified personal approach rather than through the currently available generic approach using websites.