Answered Questions is a monthly resource for the Spanish language Disability Community that fills an information need. Each month, we look through the searches on our blog and through the information requests made by our patrons who speak Spanish and pick a topic that fills the largest need. Each resource mentioned below is associated with this month’s information need. We search the various Spanish language news sources and feeds throughout the month to bring you these articles. With the exception of the NIDILRR Projects and Further Investigation, all the linked articles and resources are in Spanish – any that are in English will be clearly marked. This month’s question is: How does caregiving affect the family members providing care to loved ones with disabilities and what resources are available to help them? This edition of Answered Questions includes items that identify the methods of improving the long-term services and supports (LTSS) system in the US; discuss the sociodemographic characteristics and material hardships of sibling caregivers of people with intellectual and developmental disabilities; discuss the relationship between depression and disability in older, caregiving and non-caregiving women; discuss the challenges and rewards of caring for someone with a spinal cord injury; discuss what the fields of aging and intellectual and developmental disabilities can learn from each other to support family caregivers; discuss technology that helps caregivers and people with disabilities manage care with less stress; and discuss a cultural perspective in the education of caregivers.
The Rehabilitation Research and Training Center on Community Living Policy (90RT5026) (in English) identifies methods of improving the long-term services and supports (LTSS) system in the US; along with improving data collection on community living policy and developing a strategic plan for community living research. The Center’s research focuses on (1) the identification of promising practices in state LTSS systems, specifically managed LTSS and streamlining the LTSS system; (2) the research on the quality of and outcome measurement in LTSS and the development of methods for improving monitoring progress in state LTSS systems; (3) the collection and dissemination of information on LTSS policies, politics, and programs, including those policies that are related to access to home- and community-based services (HCBS), data on HCBS participants and expenditures, information on worker registries and consumer-worker matching services, data on worker wages and benefits, and information on worker training standards and their development; (4) conducting evaluations of LTSS systems in California and Illinois; (5) the analysis of national survey datasets on chosen topics related to community living, which include trends in family caregiving and state variations for community participation among people with disabilities; and (6) the development of a strategic plan for community living research. This NIDILRR funded center’s training activities include an online training curriculum (in English) for both paid home care workers and family caregivers. This particular curriculum has an emphasis on person-centered, consumer-directed services that provide support to independent living at home and in the community.
The goal of the Rehabilitation Research and Training Center (RRTC) on Family Support (90RT5032) (in English) is to connect aging and disability research, practice, and polices to create new knowledge in family supports that adds to improvements in community living, participation, health and function, and other outcomes for racially and ethnically diverse people with disabilities who are supported by members of their families. This RRTC conducts six research projects: (1) Development of a Strategic Plan for Family Support that generates and prioritizes research topics and questions through a participatory approach, designs research strategies with an expert panel, and analyzes national data to answer questions that have been identified; (2) Identifying Promising Practices in Family Support Services, which uses a participatory approach to nominate, investigate, and synthesize promising local and state family support practices that can be shared and used more widely; (3) Family Member Roles and Well-Being in Self-Directed Waiver Programs, which examines the relationship between the components of self-directed waiver programs, family environment, and caregiver well-being; (4) Understanding Experiences, Trends, and Needs in Self-Directed Support Programs, which uses mixed methods to study the national trends in self-directed support and the experience and satisfaction of caregivers in self-directed support programs; (5) Family Support in Managed Care, which studies the impact of transitioning from fee-for-service to managed care on families and individuals who receive services; and (6) Parents Taking Action: A Parent Training Program for Latino Families of Children with Autism Spectrum Disorder (ASD), which examines the efficacy of an intervention that engages Latino parents of children with ASD in providing education and training to other parents.
Articles from NIDILRR:
Sibling caregivers of people with intellectual and developmental disabilities: Sociodemographic characteristics and material hardship prevalence. (J70491). This English language article, from the researchers at the NIDILRR-funded Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD) (90RT5020), compared sibling caregivers to the general working age adult population by describing their social characteristics and material hardship levels through the use of nationally representative data from the Survey of Income and Program Participation. The results from this study suggest several things, including: (1) that sibling caregivers were more likely to be women, African American, older, and poorly educated in comparison to other working-age adults; (2) sibling caregiver households were more likely to experience monetary hardship; and (3) sibling caregiving households were more likely to receive social welfare benefits. These results imply that policymakers need to take decisive steps to provide support to sibling caregiver households and to plan for when not only parent caregivers, but also sibling caregivers, can no longer maintain caregiving responsibilities.
Longitudinal and reciprocal relationships between depression and disability in older women caregivers and non-caregivers. (J73462). This English language article describes a 6-year study that evaluated the associations between depression symptoms and disability and explored if these associations were different in caregivers and non-caregivers from a large, multisite sample of older women dwelling in the community. To investigate the relationships between depressive symptoms and disabilities, structural equation models were utilized over 3 interviews among 956 older women from the Caregiver Study of Osteoporotic Fractures. The results were evaluated separately for the 611 non-caregivers and the 346 family caregivers. The study found that more depressive symptoms predicted significantly greater disability for non-caregivers. Also, greater disability predicted increased depressive symptoms at the next interview for non-caregivers. In comparison, a significant relationship between depression and disability was not found in either direction for caregivers.
Caring for a Family Member with Spinal Cord Injury Can Be Both Challenging and Rewarding (NARIC – US – in English): This Research In Focus article discusses research conducted by the researchers in a field initiated study on Developing a Relevant Instrument to Assess Caregiver Distress and Benefit in Spinal Cord Injury (in English) which identified several themes that frequently came up in 16 focus groups. The caregivers in the focus groups described caregiving “as a mixed experience with both negative and positive aspects.” This article is also available in Spanish.
What Can the Fields of Aging and Intellectual and Developmental Disabilities Learn from Each Other to Support Family Caregivers (NARIC – US – in English): This Research In Focus article discusses the analysis done by researchers from the Rehabilitation Research and Training Center on Health and Developmental Disabilities (in English) of interventions that were developed to help family members who provide care and support to adults with intellectual and developmental disabilities (IDD) or to those who are aging. The researchers found that, amongst other differences, while the aging field referred to providing care as “caregiving”, the IDD field regularly referred to is as “family support”. The researchers also found similarities in the types of caregiving and family support programs. Overall, the researchers found that both types of programs benefited those who participated in them. This article is also available in Spanish.
Technology allows patients, caregivers to manage care with less stress (US): This article describes research at the University of Michigan in collaboration with the Ann Arbor Department of Veterans Affairs that shows how targeted information provided on an automated basis can help relieve the stress and burden of caregiving and improve outcomes for older patients with serious chronic health problems. The trial in this study offered mobile health support for patients with heart failure and their informal caregivers. The researchers’ goal was to see if structured support from the program and informal caregivers could improve the self-care and health status of patients. Researchers also wanted to see if automated feedback could alleviate the burden on caregivers and aid them in avoiding burnout and mental health concerns. After identifying an informal caregiver, patients in the study were placed in two groups: in group one, patients received self-care monitoring and education through weekly automated calls with information about urgent health problems being reported to the clinical team. Participants in group two received identical services through email instead of phone calls with information about their status and suggestions on how to be of help was sent to the patient’s informal caregiver. Two assessments were completed at 6 months and 12 months into the trial by the caregivers in both groups. The assessments included evaluation of caregiving strain, depressive symptoms and participation self-care support. The caregivers in the second group reported less caregiver strain and depression than those in the first group. You can read the article in Spanish here.
The effect of an educational program for caregivers of the elderly: A cultural perspective (Bogota, Colombia) describes a study whose objective was to determine the effect of the use of an educational program with a cultural perspective on the self-perception of health, family function, caregiver burden, and depression of caregivers of the elderly with disabilities and who had financial difficulties. Fifty-six family caregivers participated in this study and were put in two groups: one experimental and the other control. The experimental group participated in six group sessions during a 30 day period. Each session had five phases: sensitization, culturally-adapted information, making decisions, commitment to action, and a close. The education program was supervised by a geriatrics nurse and by a transcultural nurse and the scales Self-perception of Health, Apgar family, Caregiver burden, and the Depression Scale were applied during this study. The results of this study indicated that the educational program with a cultural focus had a significant effect on family function and caregiver burden. However, there were no significant differences in the self-perception of health and depression variables. The researchers found that that education from a cultural perspective open a door to create diversity within therapies and could be a key to the success of patient adherence to therapy.
- Two blog posts from NARIC’s staff on NARIC’s Spotlight blog provide great resources for caregivers. The first is “Thank you, Caregivers!” (in English and the Spanish blog post is also available) where you will find resources from the NIDILRR community and that include Eldercare.gov, 2-1-1, the Family Caregiver Alliance and the National Center on Caregiving, the Department of Veterans Affairs, AARP’s caregiving center, and the Women’s Institute for a Secure Retirement. The second post is “Information and referral services at your fingertips!”, which deals with information and referral services specifically, but can be very useful for caregivers in search of information and referrals that can help the people they are caring for. This blog post is also available in Spanish.
- Manual of recommendations for caregivers of patients with major neurological disabilities (Spain) provides basic information to caregivers about neurological disabilities and discusses what caregivers need to know about providing care to someone with a traumatic brain injury. This manual also provides information on hygiene, nutrition, administration of medications, bladder and bowel management, care of the respiratory system, changes in posture and movement, and how to avoid injury during transfers. Included in this manual are information on social support, FAQ, and contact information for organizations in Spain that might be of interest to people caring for family members with a traumatic brain injury.
- Resource Center for Caregivers (AARP – Puerto Rico) provides basic information on caregiving, practical resources, discussions with experts, information on services in Puerto Rico, practical tools, and resources to help caregivers. You can call this resource center for help by calling 888/971-2013.
- Medicare provides a toolkit full of resources for caregivers (Medicare.gov – US) that provides practical information and PDFs full of advice on how to manage challenges such as paying for healthcare, managing a transition from the hospital to home healthcare, and managing stress.
- AHRQ Health Care Innovations Exchange:
- International Research: