The current study analyzed blogs written by four Dutch parents of children with profound intellectual and multiple disabilities, with the aim of deepening the understanding of the parents’ concerns. Thematic analysis was conducted and five main themes were identified: Dealing with uncertainties addressed the impact of unpredictability present in the everyday lives of parents, Love and loss described the complexity of concurrently cherishing the child and grieving various types of loss, Struggling with time, energy and finances detailed imbalances and struggles related to parents’ personal resources, Feeling included in communities and society specified social consequences, and Relating to professional care services reflected on stress and support associated with professional care delivery. The study findings demonstrate how care professionals should acknowledge parents’ vulnerabilities by being aware of their existential distress and empowering parents to exercise control of family thriving.
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Worldwide, schools implement social-emotional learning programs to enhance students' social-emotional skills. Although parents play an essential role in teaching these skills, knowledge about their perspectives on social-emotional learning is limited. In providing insight into the perspectives of parents from adolescent students this paper adds to this knowledge. An explorative qualitative study was conducted to gain insight into parents' perspectives on adolescent social-emotional learning. A broadly used professional framework for social emotional learning was used as a frame of reference in interviews with parents from diverse backgrounds. Within and across case analyses were applied to analyze the interviews. A conceptual model of four social-emotional skills constructs considered crucial learning by parents emerged from the data: respectful behavior, cooperation, self-knowledge and self-reliance. Parents' language, interpretations and orderings of skills indicate that the model underlying these constructs differs from skills embedded in the professional framework.
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Presentatie over onderzoek naar Online Parenting Support: guiding parents towards empowerment through single session email consultation.
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Chronic sorrow involves parents’ enduring grief due to their child’s disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being confronted with societal and personal norms and expectations they cannot meet. There is a lack of research on the lived experiences of parents’ chronic sorrow. An Interpretative Phenomenological Analysis (IPA) study involving six parents with severely disabled children explored what it is like for parents to confront being ‘‘different.’’ Besides sorrow, the parents experienced intense ambiguity,guilt, and uncertainty while navigating societal expectations and their own perceptions of their children. Their ideas of parenthood and their self-identity as parents proved central to their strategies. This study provides insight into the intricacies of this particular aspect of chronic sorrow in parents, with relevance for research and practice.
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• Introduction research concern • Presentation: Images and metaphors expressed by Dutch parents (caring for children with PIMD) • Dialogue and participation
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In order to optimize collaboration between Speech and Language Therapists (SLTs) and parents of children with Developmental Language Disorders (DLD), our aim was to study what is needed for SLTs to transition from the parent-as-therapist aide model to the FCC model and optimal collaborate with parents. Chapter 2 discusses the significance of demystifying collaborative working by making explicit how collaboration works. Chapter 3 examines SLTs’ perspectives on engaging parents in parent-child interaction therapy, utilizing a secondary analysis of interview data. Chapter 4 presents a systematic review of specific strategies that therapists can employ to enhance their collaboration with parents of children with developmental disabilities. Chapter 5 explores the needs of parents in their collaborative interactions with SLTs during therapy for their children with DLD, based on semi-structured interviews. Chapter 6 reports the findings from a behavioral analysis of how SLTs currently engage with parents of children with DLD, using data from focus groups. Chapter 7 offers a general discussion on the findings of this thesis, synthesizing insights from previous chapters to propose recommendations for practice and future research.
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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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Background: Collaboration between parents and speech and language therapists (SLTs) is seen as a key element in family-centred models. Collaboration can have positive impacts on parental and children’s outcomes. However, collaborative practice has not been well described and researched in speech and language therapy for children and may not be easy to achieve. It is important that we gain a deeper understanding of collaborative practice with parents, how it can be achieved and how it can impact on outcomes. This understanding could support practitioners in daily practice with regard to achieving collaborative practice with parents in different contexts. Aims: To set a research agenda on collaborative practice between parents and SLTs in order to generate evidence regarding what works, how, for whom, in what circumstances and to what extent. Methods & Procedures: A realist evaluation approach was used to make explicit what collaborative practice with parents entails. The steps suggested by the RAMESES II project were used to draft a preliminary programme theory about collaborative practice between parents and SLTs. This process generates explicit hypotheses which form a potential research agenda. Discussion & Conclusions: A preliminary programme theory of collaborative practice with parents was drafted using a realist approach. Potential contextual factors (C), mechanisms (M) and outcomes (O) were presented which could be configured into causal mechanisms to help explain what works for whom in what circumstances. CMO configurations were drafted, based on the relevant literature, which serve as exemplars to illustrate how this methodology could be used. In order to debate, test and expand our hypothesized programme theory for collaborative practice with parents, further testing against a broader literature is required alongside research to explore the functionality of the configurations across contexts. This paper highlights the importance of further research on collaborative practice with parents and the potential value of realist evaluation methodology
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Abstract Background. Fever in children is common and mostly caused by self-limiting infections. However, parents of febrile children often consult in general practice, in particular during out-of-hours care. To improve management, it is important to understand experiences of GPs managing these consultations. Objective. To describe GPs’ experiences regarding management of childhood fever during out-ofhours care. Methods. A descriptive qualitative study using purposeful sampling, five focus group discussions were held among 37 GPs. Analysis was based on constant comparative technique using open and axial coding. Results. Main categories were: (i) Workload and general experience; (ii) GPs’ perceptions of determinants of consulting behaviour; (iii) Parents’ expectations from the GP’s point of view; (iv) Antibiotic prescribing decisions; (v) Uncertainty of GPs versus uncertainty of parents and (vi) Information exchange during the consultation. GPs felt management of childhood fever imposes a considerable workload. They perceived a mismatch between parental concerns and their own impression of illness severity, which combined with time–pressure can lead to frustration. Diagnostic uncertainty is driven by low incidences of serious infections and dealing with parental demand for antibiotics is still challenging. Conclusion. Children with a fever account for a high workload during out-of-hours GP care which provides a diagnostic challenge due to the low incidence of serious illnesses and lacking longterm relationship. This can lead to frustration and drives antibiotics prescription rates. Improving information exchange during consultations and in the general public to young parents, could help provide a safety net thereby enhancing self-management, reducing consultations and workload, and subsequent antibiotic prescriptions.
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Background Parenting a child with profound intellectual and multiple disabilities has great implications. Parents generally rely heavily on healthcare and social welfare services in caring for the child at home. Previous studies indicated mismatch between what parents need to preserve family and personal wellbeing and what is typically provided by services. This study focused on the role of healthcare and social welfare services in childcare and aims to contribute to understanding how parents perceive their interactions with service providers. Methods We interviewed 25 Dutch parents who cared for their child at home. Data were analysed using Framework Method. Findings Two overarching themes were found: “Being the lifeline” addressed that parents had central roles in fragmented services, and “Losing ownership” highlighted that parents were constrained in living life according to own beliefs and values while interacting with providers. Conclusions Findings illuminated that many parents became overburdened and compromised heavily on agency over family thriving due to functioning of healthcare and social welfare services. Findings supported working with integrated family case managers, creating effective and proactive access to equipment and services, and enacting high quality facilities for help with childcare and respite. These are important conditions to enable parents to construct family life more autonomously and make their further contribution to society. This may also lead to improved connotations of dependence on healthcare and social welfare services.
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