The family caregiving context among adults with disabilities: A review of the research on developmental disabilities, serious mental illness, and traumatic brain injury

Barrio, Concepción; Hernández, Mercedes; Gaona, Lizbeth

doi:10.1080/10522158.2016.1233923

Cited by 8 publications

(5 citation statements)

References 68 publications

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“…A traumatic brain injury (TBI) can be defined as trauma to the head due to falls, vehicular accident, experiencing blasts or other explosion in military combat, or some other strike to the head that leaves lasting injury to the brain (Barrio et al, 2016). The Centers for Disease Control and Prevention reported that there were 224,000 TBI hospitalizations and over 61,000 deaths in 2017 (Peterson et al, 2021).…”

Section: Literature Reviewmentioning

confidence: 99%

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Addressing caregiver needs of brain injury survivors through telehealth: A pilot qualitative study

Roberson,

Hagues,

White

et al. 2023

Family Relations

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ObjectiveThis study sought to identify effective means for delivering services to address the unique needs of caregivers for traumatic brain injury (TBI) survivors.BackgroundCaregivers for TBI survivors face unique and intense challenges, including deep isolation. When these caregivers fail to thrive, the entire family system suffers.MethodEmploying a pilot study utilizing qualitative methods, we explored the effectiveness of an intervention piloting telehealth counseling to address some of the unique caregiving challenges for the TBI survivor's caregiver. We conducted two focus groups of four participants to obtain qualitative data.ResultsQualitative analysis identified key themes: isolation, boundary issues, challenges of therapy, and the benefits of telehealth counseling.ConclusionsResults indicate an improvement in overall functioning of caregivers when accessing telehealth services.ImplicationsOn a micro level, results demonstrate that telehealth services can help TBI caregivers prevent boundary enmeshment. On a macro level, results have implications for increased investment and resources for those who serve the TBI population through an online format as well as proposed best practices for the method of service delivery.

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Section: Literature Reviewmentioning

confidence: 99%

“…Unintentional falls and motor vehicle accidents accounted for the most common reasons for TBI hospitalizations in 2016 and 2017 (Peterson et al, 2021). TBIs can lead to major cognitive, emotional, and social damage and disablement that impact the individual survivor as well as the family system (Barrio et al, 2016).…”

Section: Literature Reviewmentioning

confidence: 99%

Addressing caregiver needs of brain injury survivors through telehealth: A pilot qualitative study

Roberson,

Hagues,

White

et al. 2023

Family Relations

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“…Caregiving can have an adverse effect on caregivers, especially those who serve as compound caregivers [3,6,33]. Few studies have examined the impact of caregiving on QOL and FQOL, speci cally related to caregivers' career-related pursuits.…”

Section: Study Rationale and Research Questionsmentioning

confidence: 99%

Careers and Quality of Life: Perceptions of Compound and Noncompound Family Caregivers

Samuel

Wright

Marsack‐Topolewski

et al. 2022

Preprint

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Purpose. Providing care to a family member with disabilities takes a toll on the quality of life (QOL) of the caregiver and the family, specifically regarding careers and career preparedness. Although compound caregiving (i.e., caring for more than one family member) is becoming increasingly common, few research studies focus on the career-related challenges of caregiving families. Extant literature typically describes individual-level outcomes of caregivers (e.g., caregiver stress, burden, depression) with sparse knowledge on family well-being. The purpose of this study is to compare the individual and family QOL with a special emphasis on the careers of compound and noncompound caregivers of people with disabilities using the theoretical lens of family quality of life (FQOL). Methods. Cross-sectional survey data gathered from 191 family caregivers (78 compound caregivers and 113 noncompound caregivers) was evaluated to identify differences in QOL, global FQOL, and six career-related dimensions (importance, opportunities, initiative, attainment, stability, and satisfaction). Results. Compound caregivers reported lower QOL and global FQOL than noncompound caregivers. Compound caregivers also reported that as a family unit they had fewer career-related opportunities, and lower attainment and satisfaction than noncompound caregivers. Conclusion. These findings have practice implications for supporting the career pursuits of caregiving families, especially those with multiple caregiving responsibilities.

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“…One possible determining factor is the availability of support services in the community. Service gaps are often barriers to community living, for example, some community services are inadequate or the expectations for programs are not clear [10]. Nearly 50% of caregivers for children with intellectual disabilities failed to use services that were suggested by professionals, whereas more than 30% of caregivers stated that the suggested services did not meet their needs [11].…”

Section: Introductionmentioning

confidence: 99%

Types of Community Support Services and Self-Efficacy for Continuous Community Living among Individuals with Disabilities and Caregivers

Chan

Cao

et al. 2022

IJERPH

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This study explored the impacts of five types of community support services (i.e., center-based care, home-based care, respite care, caregiver assistance, and financial subsidies) on self-efficacy for continuous community living among individuals with disabilities and caregivers. Design: Cross-sectional. Method: The sample consisted of a group of individuals with disabilities (n = 948) and a group of caregivers (n = 522). A mixed ANOVA was applied to explore the differences in the perceived importance of improvements to community support services between the groups. Logistic regression analyses were conducted to examine the perceived importance of improvements to types of community support services for self-efficacy for continuous community living. Results: Caregivers perceived higher levels of importance for improvements to community support services than individuals with disabilities. Both groups reported that financial subsidies were the most important area for improvement. The greater importance of improvements to financial subsidies reported by caregivers predicted greater odds for self-efficacy for continuous community living. The greater importance of improvements to center-based services reported by individuals with disabilities predicted greater odds for self-efficacy for continuous community living. Conclusions: The findings suggested that financial subsidies for caregivers and center-based services for individuals with disabilities could improve self-efficacy for continuous community living.

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The family caregiving context among adults with disabilities: A review of the research on developmental disabilities, serious mental illness, and traumatic brain injury

Cited by 8 publications

References 68 publications

Addressing caregiver needs of brain injury survivors through telehealth: A pilot qualitative study

Addressing caregiver needs of brain injury survivors through telehealth: A pilot qualitative study

Careers and Quality of Life: Perceptions of Compound and Noncompound Family Caregivers

Types of Community Support Services and Self-Efficacy for Continuous Community Living among Individuals with Disabilities and Caregivers

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