Research Priority: Family and Caregiver Needs

Addressing family and caregiver needs is a priority area across the lifespan, and in home and community settings.  There is a great need for more effective interventions and improved outcomes for this population.

  • It is estimated that over 18% of U.S. adults (over 43 million) have served as a caregiver for an adult or child with a disability or chronic health condition in the past year.  Most care recipients are adults.1
  • Caregivers address a variety of problems associated with physical conditions, memory impairments, emotional or behavioral problems, and intellectual/developmental / disabilities. 1
  • Caregivers report helping care recipients with activities of daily living (60%), instrumental activities of daily living (100%), and health care needs (>50%). 1
  • Over 40% of caregivers have a high level of caregiving burden based on their hours of care and almost 25% of caregivers report that this role has negatively affected their health.  It is estimated that about 1/3 of caregivers provide 21 or more hours of care per week.1
  • Approximately 8 out of 10 caregivers report they could use more information or help on special topics, including stress management, safety in the home, toileting, and handling problem behaviors. 1
  • Additional research on caregiving is needed to define its breadth and scope, estimate the economic impact, identify high risk factors, and develop effective interventions. 2


Urgent Need

Family and caregiver needs have been identified as  

  • a critical area to target to promote health and well-being for families and individuals across conditions and populations
  • an area in which evidence-based measures and interventions are needed
  • an area where application of the unique expertise of occupational therapy would be highly beneficial.  


The OT Lens

Caregiving entails “doing everyday activities” that support the health and well-being of another person. Caregivers must also attend to their own needs for participation in meaningful life activities to maintain their physical and emotional health.  

Occupational therapy knowledge regarding factors that affect the ability to engage successfully in daily activities and ways in which the environment can facilitate successful engagement may support development of effective caregiver interventions to meet the needs of recipients requiring different levels of care.

Current knowledge, research training, measures and interventions are inadequate for addressing the needs of care recipients and caregivers. AOTF is committed to the development of a scientific network and body of evidence to achieve effective and efficient advances to address family and caregiver needs across the lifespan.


Opportunity to Affect Progress

There are a few occupational therapy scientists who are building knowledge related to family and caregiver needs.  However, there is not a coordinated network for occupational therapy research in this area, nor sufficient resources to train more occupational therapy researchers.  We believe a significant investment is needed to address family and caregiver needs across the lifespan in order to achieve better outcomes and improve quality of life.



1. National Alliance for Caregiving. (2015). Caregiving in the U.S.  Retrieved from 

http://www.caregiving.org/wp-content/uploads/2015/05/2015_CaregivingintheUS_Executive-Summary-June-4_WEB.pdf 

2. National Institute on Aging. (2012). Next steps for research on informal caregiving. Retrieved from  https://www.nia.nih.gov/research/dbsr/bsr-sponsored-publications


 

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