Dataset Information

Exploring the Views of Osteogenesis Imperfecta Caregivers on Internet-Based Technologies: Qualitative Descriptive Study.

ABSTRACT:

Background

Osteogenesis imperfecta (OI) is a rare genetic condition that can lead to frequent debilitating bone fractures. Family caregivers of children with OI face unique challenges in providing care, which may include limited access to information about the condition, feelings of distress, and experiences of social isolation. Internet-based technologies (IBTs) have been useful for supporting other types of caregivers. However, the views of OI caregivers on IBTs have not been explored.

Objective

This study aimed to explore the views of OI caregivers on the uses of IBTs to support them in caring for their children with OI.

Methods

A qualitative descriptive study was conducted. Caregivers of children with OI were recruited at a pediatric hospital in Montreal, Canada. Interviews were used to explore each caregiver's views on the applicability of IBTs in supporting their caregiving needs. The interviews were transcribed verbatim and thematically analyzed.

Results

A total of 18 caregivers participated. The caregivers shared that IBTs were useful for facilitating the following activities: daily activities of caregiving (such as providing physical care, supporting relationships, supporting self-care and hope, and managing the logistics of caregiving), OI medical information seeking, and OI social networking. However, they also revealed concerns about the health consequences of IBT use and the quality of IBT content. Concerns regarding IBTs varied somewhat with caregivers' geographies. Caregivers offered suggestions and strategies for how IBTs can be optimized for caregiving.

Conclusions

Family caregivers of children with OI face unique challenges in providing care, which may include lacking access to information about the rare condition and feeling socially isolated. OI caregivers use IBTs to overcome some of these challenges and to support their specific caregiving needs. These findings contribute to the paucity of knowledge by offering varied IBT strategies to support caregiving activities, which may be beneficial for other caregivers. Participants' suggestions for IBT services can inform the development of new resources for OI caregivers and potentially for other caregivers of children living with rare conditions.

SUBMITTER: Castro AR

PROVIDER: S-EPMC6939279 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

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Publications

Exploring the Views of Osteogenesis Imperfecta Caregivers on Internet-Based Technologies: Qualitative Descriptive Study.

Castro Aimee R AR Chougui Khadidja K Bilodeau Claudette C Tsimicalis Argerie A

Journal of medical Internet research 20191218 12

<h4>Background</h4>Osteogenesis imperfecta (OI) is a rare genetic condition that can lead to frequent debilitating bone fractures. Family caregivers of children with OI face unique challenges in providing care, which may include limited access to information about the condition, feelings of distress, and experiences of social isolation. Internet-based technologies (IBTs) have been useful for supporting other types of caregivers. However, the views of OI caregivers on IBTs have not been explored. ...[more]

PMID: 31850851

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Project description:BackgroundGene drive technologies (GDTs) promote the rapid spread of a particular genetic element within a population of non-human organisms. Potential applications of GDTs include the control of insect vectors, invasive species and agricultural pests. Whether, and if so, under what conditions, GDTs should be deployed is hotly debated. Although broad stances in this debate have been described, the convictions that inform the moral views of the experts shaping these technologies and related policies have not been examined in depth in the academic literature.MethodsIn this qualitative study, we interviewed GDT experts (n?=?33) from different disciplines to identify and better understand their moral views regarding these technologies. The pseudonymized transcripts were analyzed thematically.ResultsThe respondents' moral views were principally influenced by their attitudes towards (1) the uncertainty related to GDTs; (2) the alternatives to which they should be compared; and (3) the role humans should have in nature. Respondents agreed there is epistemic uncertainty related to GDTs, identified similar knowledge gaps, and stressed the importance of realistic expectations in discussions on GDTs. They disagreed about whether uncertainty provides a rationale to refrain from field trials ('risks of intervention' stance) or to proceed with phased testing to obtain more knowledge given the harms of the status quo ('risks of non-intervention' stance). With regards to alternatives to tackle vector-borne diseases, invasive species and agricultural pests, respondents disagreed about which alternatives should be considered (un)feasible and (in)sufficiently explored: conventional strategies ('downstream solutions' stance) or systematic changes to health care, political and agricultural systems ('upstream solutions' stance). Finally, respondents held different views on nature and whether the use of GDTs is compatible with humans' role in nature ('interference' stance) or not ('non-interference stance').ConclusionsThis interview study helps to disentangle the debate on GDTs by providing a better understanding of the moral views of GDT experts. The obtained insights provide valuable stepping-stones for a constructive debate about underlying value conflicts and call attention to topics that deserve further (normative) reflection. Further evaluation of these issues can facilitate the debate on and responsible development of GDTs.

Project description:BACKGROUND:Overweight and obese adolescents are reported to be less physically active than their peers. Research-based knowledge about their views may contribute to a better understanding of key factors that may foster or undermine motivation for physical activity, and provide knowledge for the future development of interventions. This paper explores experiences of physical activity among overweight adolescents, age 13-14 years, participants in Young & Active, a web-based controlled trial intervention to increase physical activity (ClinicalTrials.gov NCT01700309). The theoretical perspective is based on Self-Determination Theory. METHODS:Two qualitative post-intervention research interviews, with a nine-month interval, were conducted with 21 adolescents, 15 girls and 6 boys to study short-term and long-term changes. The informants were recruited from a total of 84 participants from the Young & Active intervention group. Data were analyzed using qualitative content analysis. RESULTS:The participants associated physical activity with organized sports and physical education classes at school, and as a means of promoting good health and attractive bodies. A majority of the adolescents said that they experienced their health as poorer than other youths, and expressed worries about their fitness and future health. Mastering a physical activity, being together with friends and having fun promoted motivation to perform sports. Not mastering an activity, or not knowing the others made them less motivated. None of the adolescents highlighted the importance of informal active living when asked about their understanding and experiences of physical activity. Consistency was found between the first and second interviews. CONCLUSION:This study adds to limited research on overweight and obese adolescents' experiences of physical activity. The participants' views reflect opinions in society about physical activity, and its importance for health. Viewing physical activity as conducted within organized sports makes it necessary to look into how these are organized, structured and led, and what can be done to support self-esteem, autonomous motivation and participation. The ability to choose among available, affordable and desirable physical activities, together with friends, may promote participation and maintenance.

Dataset Information

Exploring the Views of Osteogenesis Imperfecta Caregivers on Internet-Based Technologies: Qualitative Descriptive Study.

Background

Objective

Methods

Results

Conclusions

Publications

Exploring the Views of Osteogenesis Imperfecta Caregivers on Internet-Based Technologies: Qualitative Descriptive Study.

Similar Datasets

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