Thank you for participating in the online forum of the National Dialogue on Family Support! We appreciate your comments and ideas. This IdeaScale forum is now closed to new posts, but we're still accepting comments by form or phone.  Visit http://fsrtc.ahslabs.uic.edu/research/needtoknow/ to find out more or call toll-free 1 (844) 781-4158. 

 

Tell Us What We Need to Know!

We want your help to understand what research topics are important for families who provide caregiving assistance and support to relatives and loved ones.

Families provide important support to children, adults, and older adults with a wide range of disabilities and support needs. The support that families give is broad and can include emotional support, personal assistance, transportation, and educational or occupational advocacy. Family members who provide care and assistance often do not have the resources and support they need for this.

FS Need to Know is a national initiative, conducted in both English and Spanish, to gather family support research questions and topic ideas. We want you to tell us what questions and topics about family support need better answers.

The research topics and questions that you suggest as part of FS Need to Know will hep create a national strategic plan for family support research in the U.S. We will use your insights to create a plan to research these issues and to help inform family support policies, programs, and services. In particular, we welcome responses from individuals with disabilities, family caregivers, siblings, family advocacy organizations, service providers, and researchers.

 

What are we asking you to do?

Describe at least one topic that you think family support researchers should explore further. Explain why you think this topic is important.

Things to think about as you respond:

  • practical issues with providing support to family members who need assistance
  • physical, financial, spiritual, and emotional aspects of providing family support
  • information you wish national and local decision makers or healthcare/social service providers know about family support.

We hope to generate a list of important research topics and questions to include in the strategic research plan. Thank you for your willingness to participate!

 

How to Submit Your Idea

To post or comment, please register for the site using the Register button in the upper right corner. Complete the registration form, and you'll receive a confirmation email. After confirming your email and creating a password, you're free to post, comment, and vote. On future visits to the site, you can enter by clicking log in.

To submit an idea, please click the Submit New Idea button at the top of the navigation sidebar. You will then be asked to add a title for the new idea. You will also have the option to add tags to the idea. To vote on an idea, simply click the up or down arrows to the right of the idea title/description. And to add a comment, click in the box below the idea.

If you would like to see all ideas created with a specific tag, you can click on the word or phrase via the tagcloud in the navigation sidebar area under "What we're discussing". To return to this page, click the All Ideas link.

 

For Questions & Help:

If you have problems registering or posting comments, contact dialogue@easterseals.com. For questions and comments about the Need to Know project, call (844) 781-4158.

The FS Need to Know Dialogue is co-hosted by the Family Support Research and Training Center and Easter Seals, Inc. FS Need to Know is a project in the Family Support Research and Training Center (FSRTC) at the University of Illinois at Chicago. FSRTC is funded by a grant from the Department of Education, NIDRR grant H133B140046.

 

 

Family Support Topic

Cost Benefits of Family Caregiver Support Programs

More research is needed to demonstrate the cost benefits of family caregiver support programs. Supporting family caregivers can reduce undesirable placements in institutional settings, prevent avoidable hospitalizations, improve care coordination, and enhance the overall health and wellbeing of individuals with disabilities. However, the research on cost benefits is very limited. Particularly as more states move to managed ...more »

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Family Support Topic

Cost-effectiveness of respite for family caregivers

Research is needed to demonstrate how respite for family caregivers may be cost-effective in terms of preventing institutionalization of the care recipient, enabling caregivers to maintain their own good health as well as that of the care recipient, etc.

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Family Support Topic

Respite Research

Respite is often the most frequently requested family support service. However, according to the ARCH/ACL Expert Panel on Respite Research, which will be issuing respite research recommendations this summer, high quality research on respite outcomes for the family caregiver, the care recipient and the family as a whole, including cost benefits, is limited and often fraught with methodological problems. More and better ...more »

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Family Support Topic

Provide tax credits for caregivers

If a caregiver is providing care, allow them to have a tax credit, for the sheer savings to the tax paying public of not having medicaid bear the costs of giving care. In the past 5 years, as a caregiver, I have saved taxpayers thousands and thousands of dollars by providing care to an elderly family member, versus relying on the government to care for the individual. Give credit where credit is due.

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Family Support Topic

Caregiving and the Workplace

Caregiving results in an overall cost to business of $33.6 billion per year due to absenteeism, supervisory time, unpaid leave, and reduced hours. Family caregiving is also estimated to add another $13.4 billion or an 8% differential to healthcare business costs. How do we convince companies to provide resources to help their employees manage their jobs and their caregiving responsibilities?

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Family Support Topic

Database of backup caregivers

The most important thing for caregivers, and the family members we/they care for, is an occasional break so we can have social interaction outside the home. To take a break we need backup assistance from time-to-time that we can count on. Independent Living Centers (CILs?) have provided no assistance in this regard. Shouldn't that be one of their core functions? What do CILs do--just advocacy? At any rate, we need ...more »

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15 votes
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Family Support Topic

Concerns for people with disabilities who become parents

The National Council on Disability 2012 report, "Rocking the Cradle: Ensuring the Rights of Parents with Disabilities," identified numerous knowledge gaps. How many people with different types of disabilities are attempting to raise children? How many of them are involved with child welfare systems? What kinds of supports are available to them ( and where)? What are their outcomes? This field is wide open, and the ...more »

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Family Support Topic

Why do caregivers have difficulty asking for help?

We all know caregiving is difficult and requires a team. There are many resources available to caregivers but caregivers have challenges reaching out and asking for help.

Building a care team and developing a care plan can avoid some caregiver heath challenges, how do we make it okay to ask for help?

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Family Support Topic

Support for Siblings of People with Disabilities

More research is needed examining the role that siblings play in the support and caregiving of their brothers and sisters with disabilities across the life course. The perspective of the siblings with and without disabilities is important to examine. We need to better understand how siblings can successfully transition into caregiving roles, what facilitates siblings to support the self-determination of their brothers ...more »

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Family Support Topic

Incidence of stress-related health disorders in family caregivers

The level of long-term chronic stress may be causing auto-immune conditions, particularly in older mothers. As far as I know, this has not been studied, but anecdotally, practically every older mother I know who is an active advocate, also has an auto-immune disorder. Until it is identified as a problem, no one will address it with any ideas for remedies.

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12 votes
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Family Support Topic

Why don't more people take advantage of adult day programs?

Many adult day programs are reasonably priced but struggle will minimal attendance. The good programs provide a wide of activities to meet the needs of participants. How do they attract more participants? If it's fear on the part of potential participants and their families, how to the programs overcome it?

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Family Support Topic

Co-operative caregiving

Is there any research available on the creation and maintenance of neighborhood co-operatives for caregiving for vulnerable adults?

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11 votes
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