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
Background: Research on maternity care often focuses on factors that prevent good communication and collaboration and rarely includes important stakeholders – parents – as co-researchers. To understand how professionals and parents in Dutch maternity care accomplish constructive communication and collaboration, we examined their interactions in the clinic, looking for “good practice”. Methods: We used the video-reflexive ethnographic method in 9 midwifery practices and 2 obstetric units. Findings: We conducted 16 meetings where participants reflected on video recordings of their clinical interactions. We found that informal strategies facilitate communication and collaboration: “talk work” – small talk and humour – and “work beyond words” – familiarity, use of sight, touch, sound, and non-verbal gestures. When using these strategies, participants noted that it is important to be sensitive to context, to the values and feelings of others, and to the timing of care. Our analysis of their ways of being sensitive shows that good communication and collaboration involves “paradoxical care”, e.g., concurrent acts of “regulated spontaneity” and “informal formalities”. Discussion: Acknowledging and reinforcing paradoxical care skills will help caregivers develop the competencies needed to address the changing demands of health care. The video-reflexive ethnographic method offers an innovative approach to studying everyday work, focusing on informal and implicit aspects of practice and providing a bottom up approach, integrating researchers, professionals and parents. Conclusion: Good communication and collaboration in maternity care involves “paradoxical care” requiring social sensitivity and self-reflection, skills that should be included as part of professional training.
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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