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Understanding the issues.
Leaders in both health care and long-term care agree on the importance of assessing caregiver needs, and they have reached a consensus about basic principles and practice guidelines.1 Yet despite growing recognition that family members, friends, and significant others provide daily support to people with chronic or disabling conditions, health and social service professionals and policymakers often overlook the significance of the caregiver's role, and their care-related strain and compromised health. In policy and in practice, the U.S. long-term care system fails to recognize, respect, assess, and address the needs of family caregivers.
Assessment is a critical step in determining appropriate support services. Caregiver assessment is a systematic process of gathering information to describe a caregiving situation. It identifies the particular problems, needs, resources, and strengths of the family caregiver and approaches issues from the caregiver's perspective and culture to help the caregiver maintain her or his health and well-being.
Moving toward increased home and community-based care as an alternative to institutional care depends greatly on family caregiving. Practitioners must consider not only how the caregiver can help the care recipient, but also how the service provider must help the family. The success of most care plans-from hospital discharge to home-often falls to the family caregiver. If the caregiver becomes ill or can no longer cope with caregiving tasks, the care recipient suffers. If the strain on the caregiver becomes too great, care in the home can be seriously compromised, which in turn can lead to nursing home placement. Therefore, effective outcomes in settings such as hospitals and home or community-based care or nursing homes depend upon knowing the needs and risks of both the care recipient and the family caregiver. Because serious illness and chronic disability also affect the family, a person- and family-centered perspective is essential for quality improvement in redesigning long-term care.2 If patients are to be truly involved in person-centered care, their families must involve themselves. This is particularly important if the care recipient has dementia.
Resource restrictions-such as insufficient staff, hours, or funding-may influence an agency's response to caregivers' needs, but much depends on how family caregivers are viewed in general. Are family members seen as "resources" to the care recipient or are they viewed as individuals with needs and rights of their own? Commonly held misconceptions often affect the way practitioners recognize, understand, and meet caregivers' needs.
In programs where caregivers are assessed, they can be acknowledged and valued by practitioners as part of the health care team. Caregiver assessment can identify family members most at risk for health and mental heath effects and determine if she or he is eligible for additional support. Effectively supporting the caregiver can result in delayed placement in more costly nursing home care.3
In 2005 a National Consensus Development conference hosted by the Family Caregiver Alliance addressed fundamental principles for caregiver assessment, guidelines for practice, strategies to change the field of practice, and reimbursement to carry out caregiver assessment across disciplines.1 These principles recognized that family caregivers are a core part of health and long-term care and that the field needs to shift to a family-centered perspective to include caregivers. Family caregivers need their own care plan in order to provide better care and to maintain their own well-being. Caregiver assessment needs to be multidimensional and reflect culturally competent practice. Professionals conducting the assessment need training in the caregiving process, elements and benefits of a formal assessment, and linking caregiver needs to appropriate services and support. Government and third-party payors need to reimburse for caregiver assessment as part of care for older adults and individuals with disabilities.
Systematic caregiver assessment practices are both desirable and feasible within the broader health care and long-term care system. However, adoption of these consensus principles requires a fundamental change of thinking in both policy and practice to accept a family-centered perspective. While some promising organizations use caregiver assessment as a core part of practice,4 it is not standard practice. The challenge is to develop curricula for professional education and training in nursing and social work, as well as other health professions, to prepare practitioners to implement caregiver assessment as a routine part of practice across all settings.
1. Family Caregiver Alliance. Caregiver assessment: principles, guidelines and strategies for change. Report from a national consensus development conference (Volume 1). San Francisco: National Center on Caregiving, Family Caregiver Alliance; 2006 Apr. http://www.caregiver.org/caregiver/jsp/content/pdfs/v1_consensus.pdf. [Context Link]
2. Feinberg LF. Strengthening families: Forging consensus on caregiver assessment. Family caregiving: State of the art, future trends; 2007 Mar 6; Chicago: Family Caregiver Alliance; 2007. p. 30-4. http://www.caregiver.org/caregiver/jsp/content/pdfs/2007_asa_preconference_proce. [Context Link]
3. Mittelman MS, et al. A family intervention to delay nursing home placement of patients with Alzheimer disease. A randomized controlled trial. JAMA 1996;276(21):1725-31. [Context Link]
4. Feinberg LF, et al. Ahead of the curve: Emerging trends and practices in family caregiver support. Washington, DC: AARP Public Policy Institute; 2006 Mar. 2006-09. http://assets.aarp.org/rgcenter/il/2006_09_caregiver.pdf. [Context Link]
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