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Previous research has documented the benefits of making for young learners, but few studies have examined how parents engage in maker activities during family visits to museums, both as facilitators of their children’s learning and as makers in their own right. In this study, we asked how caregivers participate in making and tinkering programs, how parents describe the benefits of making (for their children and themselves), and what aspects of the physical and social setting influence parents’ engagement. Data included observations of 88 family groups participating in various making and tinkering activities at a science center (including woodworking, fashion design, virtual reality drawing, circuit blocks, etc) and exit interviews with a subset of 66 caregivers. Qualitative data analysis connected observed qualities of the physical and social setting with caregivers’ observed and reported engagement. Through this analysis, we identified specific aspects of the physical environment, tools/materials, and facilitation strategies that invited family participation in general and that were associated with specific caregiver roles, including observing children’s learning, facilitation of children’s learning, and engagement as a maker alongside children. The implications of the findings for the design and facilitation of maker programs are discussed.
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Nomenclature Used by Family Caregivers to Describe and Characterize Neuropsychiatric Symptoms
Abstract Background and Objectives Neuropsychiatric symptoms (NPS) are a core feature of Alzheimer’s disease and related dementias that are characterized by a fluctuating course. NPS are challenging to manage and contribute to high rates of burden among family caregivers. Successful information exchange between clinicians and family caregivers is critical for facilitating effective management of NPS. However, this communication is often challenging due to inconsistent terminology and classification of symptoms and limited understanding of how family caregivers recognize and describe symptoms. The objective of this study was to examine the language family caregivers’ use to describe and contextualize NPS. Research Design and Methods Descriptive qualitative study of 20 family caregivers in a mostly urban county in the Midwestern United States using semistructured interviews. Caregiver descriptions of NPS were analyzed using directed content and text analysis to examine terminology, followed by a thematic analysis approach to examine contextualization of NPS. Results Caregivers employed shared terminologies to describe NPS that differed substantially from clinical terminology used to classify symptoms. Caregivers frequently engaged sense-making as a strategy to explain NPS. This sense-making served to contextualize patterns in behavior and was characterized by explanatory, situational, and strategy-oriented frameworks for understanding behavior in terms of its purpose and meaning. Caregivers’ descriptions of NPS reflected broad overlap between individual NPS (i.e., agitation and care resistance) that would generally be considered clinically distinct symptoms. Discussion and Implications Nomenclature surrounding NPS may vary considerably between family caregivers and clinicians, and should be evaluated in partnership with people with dementia and their caregivers to ensure supportive interventions and resources are responsive to caregivers’ interpretation of symptoms and sense-making.
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- Award ID(s):
- 1656927
- PAR ID:
- 10176977
- Date Published:
- Journal Name:
- The Gerontologist
- Volume:
- 60
- Issue:
- 5
- ISSN:
- 0016-9013
- Page Range / eLocation ID:
- 896 to 904
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
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- Free Publicly Accessible Full Text
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Accepted Manuscript1.0
- Journal Article:
- https://doi.org/10.1093/geront/gnz140
