Purpose: Paediatric acquired brain injury (ABI) negatively impacts parental wellbeing and family functioning. Adaptive coping, that is behaviours promoting emotional wellbeing and addressing distressing problems, may support wellbeing and family functioning. This study compared wellbeing, coping, and family functioning between parents of a child with ABI and parents in the community, and examined coping as a predictor of wellbeing and family functioning.
Methods: Forty parents of a child with ABI and 40 parents in the community participated in this cross-sectional survey using the Personal Wellbeing Index, Coping Scale for Adults Short Form, McMaster Family Assessment Device (General Functioning Subscale).
Results: The ABI group had statistically significantly lower wellbeing, (68.70) = -4.01, < 0.001, lower adaptive coping, (73.95) = -3.27, = 0.002, and poorer family functioning, (77) = 4.26, < 0.001. Family composition (single-parent/couple), having a child with ABI, adaptive coping, and non-productive coping predicted 47.7% of the variance in wellbeing, (5, 70) = 12.75, < 0.001. Parental education, having a child with ABI, and non-productive coping predicted 35.9% of the variance in family functioning, (5, 69) = 7.71, < 0.001.
Conclusions: Adaptive coping may contribute to better family outcomes in paediatric ABI.Implications for rehabilitationPaediatric ABI may have a significant impact on the child with ABI and the family, leading to poorer outcomes for some families.This study suggested that parents of a child with ABI use adaptive coping less than parents in the community but do not differ in the use of non-productive coping.Families need long-term targeted support to meet the challenges paediatric ABI presents and may benefit from interventions which actively seek to change parental coping strategies.
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http://dx.doi.org/10.1080/09638288.2021.2008522 | DOI Listing |
Alzheimers Dement
December 2024
University of Pennsylvania, Philadelphia, PA, USA.
Background: People living with Alzheimer's disease and related dementias confront numerous decisions that affect their wellbeing, as well as that of their family members. Research demonstrates the importance of family involvement in such decision making, yet there is a lack of knowledge about how patients and families work together to make decisions and how families can best provide decisional support.
Methods: Semi-structured interviews were conducted separately with 15 patients diagnosed with mild cognitive impairment (MCI) or mild dementia, identified through a National Institute on Aging-funded Alzheimer's Disease Research Center, and 14 care partners.
Alzheimers Dement
December 2024
University of Michigan, Ann Arbor, MI, USA.
Background: Approaches to caregiving interventions are often "one-size-fits-all", yet family caregivers for individuals with dementia have unique caregiving styles with which they enact daily care. Mixed-methods work by this team identified 5 distinct caregiving style profiles that vary in: orientation toward oneself or the care partner, adaptability, understanding of dementia, emotional expression, and behavioral management. This study seeks to develop a person-centered assessment of caregiving style such that interventions and services can be targeted to caregivers' unique styles of care.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
University of Saint Joseph, West Hartford, CT, USA.
Background: Many individuals with health problems and/or disabilities are largely dependent on the help of an informal caregiver, most often a family member with whom they live (CDC Report, 2018). A recent report by the Alzheimer's Association (2023) found that, compared with caregivers of people without dementia, twice as many caregivers of those with dementia have reported significant emotional, financial, and physical difficulties. Despite the important role that caregivers have in our society, research on potential factors that may buffer the negative impacts of caregiving has been lacking.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Center for Life Ethics, University of Bonn, Bonn, Germany.
Background: Projected Alzheimer's disease (AD) prevalence is expected to fourfold by 2050. With the escalating numbers of individuals affected by neurodegenerative diseases, including Parkinson's disease (PD) and AD, associated challenges encompass increased burdens on individuals and families, societal and political implications and economic impacts. Integrating patient and caregiver perspectives is essential to creating comprehensive, patient-centered care models that promote well-being and resilience in the face of degenerative neurological diseases such as AD.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
University of Wisconsin-Madison, Madison, WI, USA.
Background: Care partners of hospitalized people living with dementia (PLWD) are particularly vulnerable in the hospital setting and may feel invisible during hospitalization of the PLWD they care for. Hospital initiatives for dementia friendly spaces emphasize providing a safe and supportive environment. However, literature is scarce regarding how the hospital's physical environment influences care partners' inclusion.
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