Zoekresultaten

Marfan syndrome in childhood: parents' perspectives of the impact on daily functioning of children, parents and family; a qualitative study

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.

“Standing alone”

Purpose: To support family caregivers of persons post-stroke adequately from the start and to develop self-management interventions, we aim to gain a better understanding of family caregivers experiences at the time of acute care and therefore achieve a better understanding of how they manage their new situation. Methods and Materials: We chose a qualitative descriptive methodology using individual semi-structured interviews with eleven family caregivers of persons post-stroke. We conducted interviews retrospectively, between 2 and 10 months post-stroke, and analysed transcripts using thematic analysis. Results: The themes (1) being in survival mode, (2) feeling supported by family and friends, (3) feeling left alone by the treatment team and (4) insisting on information emerged from the data. Conclusion: During acute care, many self-management skills are required from family caregivers but are just starting to be developed. This development can first be observed as co-management with the social network and is often combined with shared decision-making. Information-sharing, foundational for developing self-management, is essential for family caregivers and should be supported proactively by health professionals from the beginning. Further, from the start, health professionals should raise awareness about role changes and imbalances of activities among family caregivers to prevent negative influences on their health.

Implementing experience sampling technology for functional analysis in family medicine

Background: A paradigm shift in health care from illness to wellbeing requires new assessment technologies and intervention strategies. Self-monitoring tools based on the Experience Sampling Method (ESM) might provide a solution. They enable patients to monitor both vulnerability and resilience in daily life. Although ESM solutions are extensively used in research, a translation from science into daily clinical practice is needed. Objective: To investigate the redesign process of an existing platform for ESM data collection for detailed functional analysis and disease management used by psychological assistants to the general practitioner (PAGPs) in family medicine. Methods: The experience-sampling platform was reconceptualized according to the design thinking framework in three phases. PAGPs were closely involved in co-creation sessions. In the ‘understand’ phase, knowledge about end-users’ characteristics and current eHealth use was collected (nominal group technique – 2 sessions with N = 15). In the ‘explore’ phase, the key needs concerning the platform content and functionalities were evaluated and prioritized (empathy mapping – 1 session with N = 5, moderated user testing – 1 session with N = 4). In the ‘materialize’ phase, the adjusted version of the platform was tested in daily clinical practice (4 months with N = 4). The whole process was extensively logged, analyzed using content analysis, and discussed with an interprofessional project group. Results: In the ‘understand’ phase, PAGPs emphasized the variability in symptoms reported by patients. Therefore, moment-to-moment assessment of mood and behavior in a daily life context could be valuable. In the ‘explore’ phase, (motivational) functionalities, technological performance and instructions turned out to be important user requirements and could be improved. In the ‘materialize’ phase, PAGPs encountered barriers to implement the experience-sampling platform. They were insufficiently facilitated by the regional primary care group and general practitioners. Conclusion: The redesign process in co-creation yielded meaningful insights into the needs, desires and daily routines in family medicine. Severe barriers were encountered related to the use and uptake of the experience-sampling platform in settings where health care professionals lack the time, knowledge and skills. Future research should focus on the applicability of this platform in family medicine and incorporate patient experiences.

The Role of Parents and Peers in the Leisure Activities of Young Adolescents.

Up to now, leisure research on the parent-peer orientation of juveniles primarily has focussed on adolescents. The purpose of this study is to investigate the degree to which pre-adolescents as well as adolescents associate with parents and peers in their leisure time. Based on recent theoretical conceptions of childhood sociologists, a questionnaire was designed for children and young teens aged ten to fifteen years. A total of 927 Dutch juveniles from different social classes participated in the current study. A leisure kids typology was constructed by means of Principal Components Analysis for categorical data (PRINCALS). It was found that ten to twelve year old children from higher social classes were family kids. They spend a substantial part of their leisure time with parents and siblings. Fourteen and fifteen year old boys, especially those from higher social classes, strongly focussed on peer groups, whereas girls of the same age had a salient preference for dyadic friendships. Questions on parental attitude towards leisure activities and choice of friends showed that ten to twelve year olds, specially those from higher social classes, experienced most parental interference in their leisure activities. Teenage girls from lower social classes encountered most parental attention concerning peer contacts. Our findings partially support theoretical conceptions regarding the parent-peer orientation of children and teens, but add some important nuances to these general perspectives.

Meaningful leisure and tourism experiences as catalysts for wellbeing.

Unraveling Modernity Logics: Everyday Doing of Migrant Families as Described in Dutch Knowledge Production Practices

Families in the Netherlands consisting of individuals falling into a variety of racialized migrant categories, are often the focus of governmental scrutiny and scientific curiosity. These ‘migrant families’ are constructed in a variety of ways, all which make it possible to center them as the object of interventions aiming to address their assumed cultural distance and their ‘traditional’ way of life, often within the discourse of ‘integration’ and within government mandated civic integration programmes. The paradox arises when these migrant families, problematized in their traditionality, their ‘unmodernity’, are seen as a threat to the Dutch ‘modern’ families and what are seen as their own national Dutch ‘traditions’. Embracing ‘tradition’ is therefore simultaneously seen as a sign of a lack of progress when attributed to migrant families, while also seen as something which must be protected, as an inherent characteristic of national identity of the modern Dutch nation state. This paper aims to explore this paradox and the constructions of the modern and unmodern family by focusing on the everyday doing of these families, and how they are studied and described in a variety of knowledge production reports. The everyday, and the description and governance of it, is a site which contributes to the (re)production of the logics of modernity, yet it is often ignored or left unseen, perhaps because of its assumed mundanity. What hierarchical descriptions exist in these reports between migrant and Dutch families on how daily family life is organized, enacted in parent child interactions, in gender roles, in community involvement, in celebratory traditions, and in work/leisure activities? How do these everyday activities, act as signifiers of the extent to which the doing of modern values (such as equality, solidarity, participation, and freedom) are enacted in everyday life in migrant vs Dutch families. Understanding these constructions, and the role that scientific research publications play in (re)producing them, will be explored to better understand how the normalization of these logics set the stage for the further scrutiny and discipline of these migranticized families.