Background: For a healthy lifestyle, people with moderate, severe, and profound intellectual disabilities living in residential facilities and/or participating in day activity centers are dependent on their direct support professionals. However, it is unclear what knowledge and skills these direct support professionals require to support these individuals in living a healthy lifestyle. Therefore, the aim of this study was to identify the needs of direct support professionals for supporting these people with moderate to profound intellectual disabilities to achieve and maintain a healthy lifestyle. Method: Direct support professionals (n = 28) were interviewed with the use of a semi-structured protocol based on the theoretical domains framework. The interviews were analyzed with a theory-driven content analysis. Results: The most frequently mentioned needs referred to the following domains of the theoretical domains framework: environmental context and resources (n = 27), social/professional role and identity (n = 25), social influence (n = 25), skills (n = 24), and knowledge (n = 23). Conclusion: To support people with moderate to profound intellectual disabilities in leading a healthy lifestyle, direct support professionals (DSPs) primarily needed support related to the domain environmental context and resources. Within this domain available time, dealing with different seasons, and a healthy lifestyle policy in the organization need attention. Development of interventions targeting these DSPs needs is required.
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Families with a child with profound intellectual and multiple disabilities (PIMD) have to manage the child’s pervasive support needs. To ensure that families are able to manage these needs, they should be properly supported. However, knowledge about the specific support needs of these families is sparse and fragmented, nor is it known if and which needs are age-specific. To learn more about these families’ support needs, 20 parents of a child with PIMD aged 3–26 years were interviewed about their family’s support needs through interviews with open-ended questions. Interview transcripts were qualitatively analysed to identify support needs in five domains (child with PIMD, family, environment, services, and system). Various (age-specific) support needs were identified. The findings of this study can help health professionals and policy makers to improve the support of families with a child with PIMD by attuning the support to these families’ specific needs.
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Purpose: Aftercare for curatively treated breast cancer patients includes support and information provision. As patients differ in their needs, personalization of aftercare is advocated, but clear guidelines on how to achieve personalization are currently missing. This study investigates patients’ preferences regarding assessment of care needs and information provision. Method: Semi-structured interviews were conducted with 18 breast cancer patients (15 female, 3 male) who received aftercare for at least three months in five Dutch hospitals. Interviews were analyzed using thematic analysis. Results: Several patients perceived current aftercare as too intensive or too little, therefore they preferred to discuss their needs beforehand with their health care provider to align aftercare with their needs. Patients preferred more attention to needs on the domains of social and emotional wellbeing and return to work. Patients preferred a comprehensive resource of information on potential (late) effects of cancer and its treatment and of available support options, enabling them to self-manage the dosage and timing of desired information. Patients had positive expectations about an aftercare plan, as it would provide a better overview of their care needs, support options and agreements about the aftercare trajectory. Conclusions: To facilitate personalization in aftercare, information and care needs should be better addressed and summarized in an aftercare plan. Patients and healthcare practitioners should create the aftercare plan together in shared decision-making. A supporting tool is needed to improve assessment of care needs on multiple domains, to provide layered information and facilitate use of aftercare plans.
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Siblings are important in the lives of individuals with an intellectual disability and pervasive support needs; however, adults’ experiences of the things they do with or for their siblings with pervasive support needs remain underexplored. This study examined positive and challenging aspects of their roles related to their siblings. An online questionnaire was completed by 55 adults whose siblings had pervasive support needs. An inductive approach was used to thematically analyze open-ended questions about their experiences. The respondents described rewarding experiences of being with their siblings, combined with a sense of care and responsibility, and noted how their experiences were affected by their siblings’ support needs. “Being of service” was experienced as both rewarding and as a demanding responsibility. Collaboration with family members and health care professionals was another overarching theme. Our findings highlighted the valuable mutual contributions of siblings in each other’s life when one of them has pervasive support needs. Understanding adults’ experiences relating to their siblings who have pervasive support needs enables service providers to facilitate their contact and support. In addition, these findings can provide input for government agencies and organizations that provide support for people with disabilities by increasing awareness about siblings’ perspectives.
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BackgroundFacilitating adult sibling involvement for individuals with pervasive support needs is important. This study explores the attitudes of healthcare professionals in this process.MethodThe attitudes of healthcare professionals (n = 60) in the Netherlands were explored through an online, self-developed survey with open and closed-ended questions.ResultsAround 40% of the participants reported (partly) lacking knowledge about sibling preferences and 23% (partly) lacking practical opportunities for involving siblings. The majority (partly) perceived the involvement of siblings as an enjoyable part of their work (82%), rated their knowledge and skills positively (87%), and regarded sibling involvement as such importance that they would be willing to exert considerable effort to contribute to it (61%). Not all participants perceived it as their job to collaborate with siblings.ConclusionsThere is a need to increase healthcare professionals' knowledge about adult sibling preferences and structurally embed sibling involvement within care practices.
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Parental involvement is a crucial force in children’s development, learning and success at school and in life [1]. Participation, defined by the World Health Organization as ‘a person’s involvement in life situations’ [2] for children means involvement in everyday activities, such as recreational, leisure, school and household activities [3]. Several authors use the term social participation emphasising the importance of engagement in social situations [4, 5]. Children’s participation in daily life is vital for healthy development, social and physical competencies, social-emotional well-being, sense of meaning and purpose in life [6]. Through participation in different social contexts, children gather the knowledge and skills needed to interact, play, work, and live with other people [4, 7, 8]. Unfortunately, research shows that children with a physical disability are at risk of lower participation in everyday activities [9]; they participate less frequently in almost all activities compared with children without physical disabilities [10, 11], have fewer friends and often feel socially isolated [12-14]. Parents, in particular, positively influence the participation of their children with a physical disability at school, at home and in the community [15]. They undertake many actions to improve their child’s participation in daily life [15, 16]. However, little information is available about what parents of children with a physical disability do to enable their child’s participation, what they come across and what kind of needs they have. The overall aim of this thesis was to investigate parents’ actions, challenges, and needs while enhancing the participation of their school-aged child with a physical disability. In order to achieve this aim, two steps have been made. In the first step, the literature has been examined to explore the topic of this thesis (actions, challenges and needs) and to clarify definitions for the concepts of participation and social participation. Second, for the purposes of giving breadth and depth of understanding of the topic of this thesis a mixed methods approach using three different empirical research methods [17-19], was applied to gather information from parents regarding their actions, challenges and needs.
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Patients diagnosed with esophageal cancer have to deal with the consequences, such as major impact on their physical status and quality of life. A digital self-management tool could be a solution to support these patients in their self-management during the peri-operative period. This dissertation resulted in a better understanding of patients' needs and desires for (digital) self-management support during pre- (and post-operative) care. In addition, a core set consisting of the most relevant topics for self-management was developed. Differences were found between esophageal cancer patients in their expectations and needs regarding self-management and eHealth for self-management support. It is important to apply a diversity of forms of support given the increased desire to provide person-centered care and the fact that no single approach will meet the needs of all patients at all times. The development of a new (digital) self-management intervention to support these patients can be based on the results of the various studies in this dissertation.
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This scoping review provides an overview of the impact of growing up with a chronically ill family member on young adults (18-25 years old), and their specific needs. Young adults represent an important life stage involving a transition to adulthood, during which individuals' family situations can affect their future. We searched relevant studies following the guideline of Arskey and O'Mailley's methodological framework and the PRISMA statement guidelines for scoping reviews in PubMed, PsychInfo and reference lists to identify articles for inclusion. Studies from 2005 to 2020 were included in this review. Of the 12 studies, six qualitative studies, five quantitative studies and one mixed method study were included. Eight studies discussed the impact, including consequences at a physical and mental level, at their personal development and future perspectives, but also positive effects, such as being capable of organizing their lives. Four studies discussed the needs of young adult carers, including emotional needs, support needs with regard to stimulating autonomy (arising from internal conflicts) and developing their own identity, and the concerned attitude of involved professionals. An unambiguous definition of the target group and further well-designed research are needed to improve clarity about the role of support, so that future professionals can adequately address the needs and wishes of young adults who grow up with an ill family member.
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Aim: The degree to which people with intellectual and visual disabilities can use technology relies on the level of support they receive. However, there is a lack of knowledge about the relationship between the constructs effort expectancy, attitudes, and behavioural intentions of support people (i.e. relatives and healthcare professionals) regarding the use of such technologies for people with intellectual and visual disabilities. The aim of this study was to gain insight into how these constructs are connected and to explore their relationship with support person’s characteristics and the support need levels of people with intellectual and visual disabilities. Methods: In total, 186 support people from a Dutch healthcare organisation focusing on people with intellectual and visual disabilities participated in an online questionnaire. We used a regression analysis to explore how the constructs, the characteristics, and the level of support needs were related. Results: Both effort expectancy (β =.35; t(185) = 5.04; p
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Background: Although particular technologies can enhance the quality of life (QoL) of people with profound intellectual and multiple disabilities (we use the term pervasive support needs), their objectives and outcomes are understudied. A systematic literature review was therefore conducted to explore this topic.Method: A search of four databases yielded 64 studies. Data were extracted on their general characteristics, methods and sample characteristics as well as the technology types, QoL domains and application within ecological systems. A narrative synthesis was subsequently developed.Results: Most of the studies applied assistive technology (AT) and focused on personal development and self-determination on an individual level.Conclusions: Technology can enhance the QoL of people with pervasive supportneeds. There are indications that although MT and UD-based technology are used in practice, few studies have examined these technologies. Therefore, there is a knowledge gap regarding the kinds of technology that are used in practice.
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