Health care providers often focus on serving either children or adults. While this focus may mean more tailored approaches to care for the individual patient, it may be a missed opportunity to address the role of family on health outcomes.
Source: Multi-Generational Approach to Care Overview
Taking a multi-generational approach involves changing the focus of how the patient is viewed within the system. Health care providers may be serving a child, but must work with the family to address any issues. Often, caregivers or parents see their child’s pediatrician more than they see their own primary care provider. Therefore, they may feel more comfortable bringing up their own health concerns or accessing community supports in this setting.
Caring for the whole family requires a system of care coordination that can support an array of services, involving a variety of health care professionals. Integrated primary care and behavioral health settings help facilitate this approach to care and leverage the community resources needed to support the whole family.
Source: 6 Steps to Creating a Culture of Person and Family Engagement in Health Care
This Planetree PFE Culture Change Toolkit is designed for health care practices participating in the Transforming Clinical Practice Initiative, but will be of value to any practice seeking strategies to improve person and family engagement. It provides guidance on creating a practice culture that emphasizes and incorporates the patient and family perspective in every aspect of care, to ultimately improve quality of care.
In the United States, family caregivers are the backbone for the delivery of supportive services for individuals with a chronic, disabling, or serious health condition. 40 percent of family caregivers of adults are men—which equates to 16 million male family caregivers in the United States.
Source: Breaking Stereotypes: Spotlight on Male Family Caregivers
They identify, arrange, and coordinate services and supports; provide emotional support; accompany their family member or friend to health provider visits; administer medications; assist with personal care (such as bathing and dressing); pay bills and deal with health insurance; and perform other vital activities to help individuals remain in their homes and communities for as long as possible.
Although the “typical” family caregiver is a 49-year-old woman who takes care of a relative, caregivers on the whole are becoming as diverse as the American population. Men, a group traditionally not recognized for performing caregiving tasks, are rising to the challenge. These husbands, brothers, sons, sons-in-law, partners, friends, and neighbors are joining, either by choice or necessity, the army of family caregivers providing care across the country. However, there is a paucity of research that has exclusively examined the impact of caregiving within and among diverse male family caregivers. Prior studies were predominately qualitative in nature and several had methodological challenges, including small sample sizes that limited the generalizability of the findings.
Using data from the Caregiving in the U.S. 2015 survey, this Spotlight highlights male family caregivers, providing current information about the experiences and challenges facing them today.
Caregiving in the United States 2015
The 2010 Family and Individual Needs for Disability Support Survey (FINDS) conducted by The Arc (2011) shows that family caregivers play a critical role in providing supports to individuals with intellectual and developmental disabilities (IDD).
Source: Research Brief: Family Caregiver Support for People with IDD | Family Support Research and Training Center
This databrief describes the kinds and amount of supports provided by families to individuals with IDD living in their family home. Caregivers provided an average of nine different kinds of support and more than half of all caregivers reported providing these supports more than 40 hours per week. More than half of caregivers in this survey reported being aged 50 or older, highlighting the critical need to start planning for a future when aging caregivers are no longer able to continue providing significant amounts of support for their family members.Click this link to download the data brief.
Developing financial capability is an important part of preparing for the transition to adulthood. Financial capability is “the capacity, based on knowledge, skills, and access, to manage financial resources effectively” (Department of the Treasury, 2010). In other words, it is the ability to make wise decisions about using and managing money. Families have an important role to play in young people’s development of financial capability. Financial knowledge and habits developed in the teen and young adult years can have a lasting impact on their future.This brief for families provides suggestions and resources on how to talk with youth about money and assist them to learn and practice financial management skills through their interactions at home.
Source: Developing Financial Capability Among Youth: How Families Can Help | NCWD/Youth
The National Research Center on Hispanic Children & Families has just released a new brief series, “La Familia: Latino Families Strong and Stable, Despite Limited Resources.” The three briefs—including the first demographic portrait of Latino fathers—take a peek into Latino family life to examine how mothers, fathers, and boys are faring.These new studies come at a time when public discourse sometimes portrays Latinos in an unflattering light—yet this new research finds that Latino families are resilient and stable, despite many having low levels of income and education. This is true for Latinos in general, but especially for Latino immigrant families.
Source: La Familia: Latino Families Strong and Stable, Despite Limited Resources | Hispanic Center
Carli Friedman and Mary C. Rizzolo (2016)
Un/Paid Labor: Medicaid Home and Community Based Services Waivers That Pay Family as Personal Care Providers. Intellectual and Developmental Disabilities: August 2016, Vol. 54, No. 4, pp. 233-244.
Correspondence concerning this article should be addressed to Carli Friedman, Disability and Human Development, University of Illinois at Chicago, 1640 W. Roosevelt Road, M/C 626 Chicago, IL, 60608 USA (e-mail: firstname.lastname@example.org).
This paper was sponsored in part by a grant from the Administration on Intellectual and Developmental Disabilities (90DN0296).
The United States long-term services and supports system is built on largely unpaid (informal) labor. There are a number of benefits to allowing family caregivers to serve as paid personal care providers including better health and satisfaction outcomes, expanded workforces, and cost effectiveness. The purpose of this study was to examine how Medicaid HCBS Section 1915(c) waivers for people with intellectual and developmental disabilities allocate personal care services to pay family caregivers. Our analysis revealed about two thirds of waivers in fiscal year (FY) 2014 allowed for family caregivers to potentially be paid for personal care services. This amounted to up to $2.71 billion of projected spending, which is slightly more than half of all personal care service expenditures in FY 2014.
Burke, M. & Heller, T. (2016) Individual, parent and social–environmental correlates of caregiving experiences among parents of adults with autism spectrum disorder. Journal of Intellectual Disability Research, 60 (5), pp 401–411. doi: 10.1111/jir.12271
Compared to parents of adults with other types of disabilities, parents of adults with autism spectrum disorder (ASD) experience worse well-being. Thus, it is crucial to identify the individual, parent and social–environmental correlates of caregiving experiences among parents of adults with ASD. For this study, 130 parents of adults with ASD responded to a survey about caregiving satisfaction, self-efficacy and burden. Greater future planning and community involvement related to more caregiving satisfaction and increased caregiving self-efficacy, respectively. Less choice-making of the adult with ASD related to greater caregiving satisfaction and self-efficacy. Maladaptive behaviours and poor health of the adult with ASD related to greater caregiving burden. Implications for policymakers, practitioners and future research are discussed.
National Goals in Research, Practice and Policy for and with People with Intellectual and Developmental Disabilities
Setting a National Agenda for Family Research, Practice, and Policy
In August 2015, a National Goals in Research, Policy, and Practice working meeting was held in Washington, DC to summarize the current state of knowledge and identify a platform of national goals, organized by 10 focus areas, in research, practice, and policy in intellectual and developmental disabilities. The products were developed in each strand for a variety of audiences with the overarching goal of advancing a research agenda that will influence policy and practice for and with people with intellectual and developmental disabilities over the next 10 years.
View Families Issue Brief, AAIDD Inclusion Journal Article, and Video