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.
MULTIFILE
Often research, education and professional practice are positioned as different activities. Researchers, students and professionals are defined in subject-object relations. For my Phd. thesis I applied another perspective. In dialogue with School Social Workers, Bachelor Social Work students during their internship, Vocational High School (VHS) Teachers and other involved actants I worked on activities to improve the financial health of VHS students. We explored in a relational spacial ethnography the roles of all above mentioned actants as learning professional and inquirer. During this long term project a mixed method participatory approach was applied. However in this ethnography these activities where integral part of developing of a whole set of interventions. It gave us the opportunity to develop new perspectives at developing interventions and learning in a relational dialogue
Background: Transmural palliative care interventions aim to identify older persons with palliative care needs and timely provide advance care planning, symptom management, and coordination of care. Nurses can have an important role in these interventions; however, their expertise is currently underused. A new transmural care pathway with a central role for the community care registered nurse in advance care planning aims to contribute to the quality of palliative care for older persons. Objective: To examine the perspectives of community nurses on the feasibility of a new transmural care pathway for advance care planning for older persons. Design: A qualitative study design using semi-structured interviews. Setting(s): Interviews were performed with community nurses of three participating homecare organizations in the Netherlands between March and May 2023. Participants: 19 community nurses. Methods: A topic guide was based on (1) challenges in advance care planning identified from the literature and (2) concepts that are important in assessing the feasibility of complex healthcare interventions provided by the Normalisation Process Theory framework. A combined inductive and deductive thematic analysis was performed. Results: Four themes were identified: views on the transmural care pathway, community nurses’ needs to fulfil their role, key points regarding implementation, and evaluation of the new practice. In general, community nurses were positive about the feasibility of the new practice as it provided a more structured work process that could facilitate interprofessional collaboration and improve the quality of palliative care. Overall, the feasibility of the new practice, from community nurses perspective, was determined by (1) clear roles and responsibilities in the transmural care pathway, (2) standardized registration of advance care planning, and (3) close involvement of community nurses in the whole implementation process. Conclusions: We highlighted important factors, from the perspectives of community nurses, that need to be considered in the implementation of a new transmural care pathway for advance care planning. A clear division of roles and responsibilities, standardized registration of advance care planning, and involvement of community nurses during the whole implementation process were mentioned as important enabling factors. This knowledge might contribute to successful implementation of a transmural care pathway that aims to enhance the quality of palliative care for older persons. Tweetable abstract: Community nurses’ perspectives on the feasibility of a transmural care pathway for advance care planning for older persons.
