David A. Gould

When the Caregiver Needs Care: The Plight of Vulnerable Caregivers

OBJECTIVES This study examined the characteristics, activities, and challenges of high-risk informal caregivers. METHODS Telephone interviews were conducted with a nationally representative cross-section of 1002 informal caregivers. Vulnerable caregivers with poor health or a serious health condition were compared with nonvulnerable caregivers. RESULTS Thirty-six percent of caregivers were vulnerable. Compared with nonvulnerable caregivers, vulnerable caregivers were more likely to have difficulty providing care, to provide higher-intensity care, to report that their physical health had suffered since becoming a caregiver, to be aged 65 years or older, to be married, and to have less than 12 years of education. CONCLUSIONS Reliance on informal caregivers without considering the caregivers ability to provide care can create a stressful and potentially unsafe environment for the caregiver and the care recipient.

Young Adult Caregivers: A First Look at an Unstudied Population

OBJECTIVES We examined the prevalence, characteristics, and responsibilities of young adults aged 18 to 25 years who are caregivers for ill, elderly, or disabled family members or friends. METHODS We analyzed 2 previously published national studies (from 1998 and 2004) of adult caregivers. RESULTS Young adult caregivers make up between 12% and 18% of the total number of adult caregivers. Over half are male, and the average age is 21. Most young adults are caring for a female relative, most often a grandmother. Young adult caregivers identified a variety of unmet needs, including obtaining medical help, information, and help making end-of-life decisions. CONCLUSIONS Analysis of these 2 surveys broadens our understanding of the spectrum of family caregivers by focusing on caregivers between the ages of 18 and 25 years. The high proportion of young men raises questions about the appropriateness of current support services, which are typically used by older women. Concerted efforts are essential to ensure that young adults who become caregivers are not deterred from pursuing educational and career goals.

Closing the Home Care Case: Clinicians’ Perspectives on Family Caregiving

Focus groups revealed five inherent conflicts that affect home health care clinicians’ interactions with family caregivers: (a) Services often depend on caregivers’ participation, but the home care system does not give them formal status or consideration; (b) clinicians must balance competing priorities within a short time frame; (c) clinicians recognize that families have unmet emotional and training needs, but benefits are not designed to address them; (d) clinicians face conflicting professional roles as patient advocates and service gatekeepers; and (e) agencies reserve social work services, a key to caregiver access to community resources, for their most difficult cases. Building a more rational system will involve raising awareness about the system’s limitation, providing more training and support for caregivers and the professionals who interact with them, and aligning financial incentives with the realities of what it takes to prepare caregivers to care for patients with complex needs when formal services end.

Closing the Home Care Case: Home Health Aides’ Perspectives on Family Caregiving

A series of focus groups with home health aides experienced in caring for patients with stroke or brain injury provided insight into how they experience their work and their relationship to family caregivers. Two issues merit more attention. First, aides reported that they do not always have all of the information, including diagnosis or previous history, which they need to provide appropriate care. Second, aides said they often receive little advance notice about when the case would close. Abrupt transitions are hard for aides, families, and patients who have often built up a good relationship. Agencies should establish better lines of communication for relevant information, correct misunderstandings about privacy rules, provide additional guidance about how to respond to caregivers’ questions, and provide adequate time for closure.

The New York City Palliative Care Quality Improvement Collaborative

BACKGROUND Care for persons living with fatal chronic conditions is expensive and challenging, and can be unreliable. A quality improvement collaborative was conducted to develop capacity among health care providers in a single geographic area-New York City-to apply quality improvement methodology to palliative care services.. METHODS The Palliative Care Quality Improvement Collaborative (PC-QuIC) modified the Institute for Healthcare Improvements Breakthrough Series model by delivering four year-long implementation cycles, with 18-24 teams in each wave and 82 teams overall. RESULTS Substantial improvements were noted in most of the team projects (advance care planning, pain, family support, coordination of care), and substantial gains were made in familiarity with continuous quality improvement (CQI) techniques and in building palliative care programs and networks. DISCUSSION Collaborative rapid-cycle QI projects in a limited geographic area can be efficient in building and sustaining improved care for persons nearing the end of their lives, especially when the work involves the broad range of organizations that care for this patient population. PC-QuICs experience illustrates the growing strength of palliative care services, but also demonstrates the challenges that confront further refinement and expansion of high-quality palliative care.