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: Collaborative practice between therapists and parents is a key element of family-centred care and is essential if we want to address family priorities and needs in interventions. However, collaborative practice is challenging for speech and language therapists (SLTs) and parents. To facilitate collaboration, collaborative practices need to be implemented into speech and language therapy for young children with developmental language disorders (DLD) and their families. Actual change and implementation of collaboration in practice will be successful only when it corresponds with patients’ needs, in our case the needs of parents of young children with DLD. Aims: To explore parents’ needs in their collaboration with SLTs during therapy for their young child with DLD. Methods & Procedures: Parents of children with (a risk of) DLD in the age of 2–6 years were eligible for participation. We recruited parents via SLTs. Twelve parents of children with DLD participated in semi-structured interviews about their needs in collaboration with SLTs. We used a phenomenological approach focusing on parents’ lived experiences. We transcribed the interviews verbatim. All interviews were read/listened to and discussed by our parent panel, multiple researchers and the interviewer. Two researchers independently analysed the data using the reflective thematic analysis of Braun and Clarke. Outcomes & Results: The analysis of the interviews resulted in six themes: (1) knowing what to expect, (2) knowing how to contribute, (3) feeling capable of supporting the child, (4) trusting the therapist, (5) alignment with parents and children's needs, preferences and priorities and (6) time and space for asking questions and sharing information. Conclusions & Implications: Parents want SLTs to invest time in collaborating with them. Parents need SLTs to empower them to become a collaborative partner and enable them to support their child in daily life. Parents need knowledge about the therapy process and diagnosis and skills in how to support their child's language development. Also, they need emotional support to feel secure enough to support their child, to ask questions to therapists and to bring up their own thoughts and opinions in therapy. Parents’ needs are in line with collaborative working as described in literature, which underlines the importance of implementing collaborative working in speech and language therapy for young children with DLD.
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ObjectiveTo obtain insights into parents' information needs during the first year at home with their very preterm (VP) born infant.MethodsWe conducted semi-structured interviews with parents of VP infants participating in a post-discharge responsive parenting intervention (TOP program). Online interviews were audiotaped and transcribed verbatim. Inductive thematic analysis was performed by two independent coders.ResultsTen participants were interviewed and had various and changing information needs during the developmental trajectory of their infant. Three main themes emerged; (1) Help me understand and cope, (2) Be fully responsible for my baby, and (3) Teach me to do it myself. Available and used sources, such as the Internet, did not meet their information needs. Participants preferred their available and knowledgeable healthcare professionals for reassurance, tailored information, and practical guidance.ConclusionThis study identified parents' information needs during the first year at home with their VP infant and uncovered underlying re-appearing needs to gain confidence in child-caring abilities and autonomy in decision-making about their infants' care.InnovationThis study provides valuable information for healthcare professionals and eHealth developers to support parental self-efficacy during the first year after preterm birth.
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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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Although first-time parents have a great need for effective support in the first challenging years of child upbringing, there is little research on volunteer-led parenting support programs in the context of the transition to parenthood. Therefore, this qualitative study examined the perceived value and key components of Home-Start, a volunteer-led parenting support program aimed at parents who have everyday parenting questions and receive little support from their environment, in the transition to parenthood. Semi-structured interviews were conducted among mothers (N = 10) with a first child up to 1.5 years old who were enrolled in the Home-Start program in the Netherlands, and volunteers (N = 12) who supported these parents. Important outcomes of the Home-Start program were increased positive parent-child interactions, improved parental confidence, and an expanded social network. Identified core needs of first-time mothers in the Home-Start program were social, emotional, informational, and instrumental support needs. Suggestions were provided to better align the program's structure with challenges in the transition to parenthood. For example, facilitating the parent-volunteer match during pregnancy, and developing a module in the Home-Start training for volunteers aimed at providing structured and informative support based on the latest insights into infant and postpartum care.
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Parents have a vital influence on the participation of their child with a physical disability. The aim of this study is to gain insight into parents’ own daily actions, challenges, and needs while supporting their child with a physical disability at home, at school, and in the community. An additional objective of this study is to refine the preliminary thematic framework previously identified in a scoping review.
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The European Primary Physical Education Teacher Program (EPRIME) project sees a need and opportunity to help teachers to reimagine their PE lessons and PA offering at pre-school and primary school levels. With it, we seek to improve the quality of PE and the promotion of an active andhealthy lifestyle from an early age across Europe.To reach this goal, 6 partners from 5 countries with 1 European network develop a teachers’ education program that empowers to better impact on the motor skills and psycho-social development of 4-to-7-year-old pupils. Plus, we provide applicable resources that supportawareness-raising initiatives to better include children, parents, sport coaches and other stakeholders in our learning objectives.In order to ensure that the educational program is in line with the wishes and needs of the teachers we organized focus group sessions in the different partner countries, and set out to identify challenges and weak points at personal, organizational and system levels. Furthermore, we identified good practices within the different partner countries to use as assets for the EPRIMEproject.The results of the focus group sessions were categorized into four main themes, factors associated with (1) the teacher, (2) the PE class, (3) other stakeholders, (4) practical considerations.
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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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• Introduction research concern • Presentation: Images and metaphors expressed by Dutch parents (caring for children with PIMD) • Dialogue and participation
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Background: Marfan syndrome (MFS) is a heritable connective tissue disease caused by a defect in FBN1. The diagnosis is based on the revised Ghent criteria. The main features involve the cardiovascular, musculoskeletal, ophthalmic, pulmonary systems and facial features. Although the clinical manifestations of MFS in children are thoroughly addressed in several studies, literature on the impact of MFS on daily functioning is restricted to pediatric advice on sports and leisure participation. Therefore, the full impact of MFS on daily functioning remains unclear. The aim of this qualitative study was to explore parents' perspectives on the impact of MFS on daily functioning of children with MFS aged 4-12 years, themselves and family regarding functional performance, activities, participation, personal and environmental factors, and disease burden. Methods: In this qualitative study parents participated in individual semi-structured interviews (n = 10) and 3 focus groups (n = 5, n = 5 and n = 6). Meetings were transcribed, and data were analyzed using thematic analysis. Meaningful concepts were coded, and concepts concerning children with MFS were linked to the International Classification of Functioning, Disability and Health for Children and Youth. Thereafter themes were identified and interpreted.Results: Parents reported their children could not keep up with peers because of fatigue, pain and physical impairments. Children experienced participation restrictions in school, sports, play and other leisure activities. Parents reported their child as being different due to physical appearance, which provoked unsupportive attitudes. Parental burden was caused by high care needs, lack of support, a limited social life, and concerns about the child's development. Family burden was caused by adjusted and complex family schedules, other family members with MFS, and reproductive planning decision-making, whereas family cohesiveness and caring were positively perceived factors. Conclusions: Parents perceived a large impact of MFS on daily functioning of their children with MFS, themselves and their family. More awareness among all professionals involved in the care of children with MFS and their families is needed so that professionals can address their support needs and provide tailored interventions, rehabilitation and/or educational programs to empower and improve daily functioning of the children, parents and family.
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