Legacy Activities as Interventions Approaching the End of Life

Abstract

We examined the efficacy of an innovative family-based intervention designed to decrease caregiving stress and increase family communication among individuals with chronic, life-limiting illnesses and their family caregivers in a randomized, contact control group design. The intervention group received three home visits in which the interventionist actively worked with the family to construct a personal Legacy, usually a scrap-book with photographs or audiotaped stories. Control group families received three supportive telephone calls. Of the 42 families that entered the project, 31 families completed follow-up assessments within 9 to 10 weeks (14 control; 17 intervention; 72% African American) for a retention rate of 74%. Intervention caregivers showed reduced caregiving stress in comparison with control group caregivers, who showed increases in stress. Intervention patients reported decreased breathing difficulty and increased religious meaning. Caregivers and patients reported greater social interaction on the part of the patient. All participants in the intervention group initiated a Legacy activity and reported that Legacy improved family communication. Legacy interventions hold promise and are simple to implement.

National Survey of Children's Hospitals on Legacy-Making Activities

“…The positive nature of legacy-making is consistent with previous studies, which have shown patient benefits including decreased breathing difficulties, distraction from pain and negative thoughts, increased religious meaning, greater social interaction, leaving a legacy, preparation for end of life, greater appreciation for self, as well as improved family communication and decreased caregiver stress. [4][5][6][7][8] However, previous studies have focused on adult and elderly adult patients [4][5][6][7] and have rarely explored legacy-making specific to pediatric populations.…”

“…3-8 Legacy-making activities including life review, dignity therapy, board games, or creative arts have been shown to benefit adult patients living with advanced cancer and their family members, [4][5][6][7][8] but have rarely been tested in pediatric populations. A qualitative study explored bereaved parents' and siblings' reports of legacies by children who had died of cancer.…”

The Psychosocial Impacts of Multimedia Biographies on Persons With Cognitive Impairments

“…Specifi c aims of reminiscence therapy include (a) enhancing communication, (b) increasing a sense of personal identity, (c) providing an enjoyable activity with others, (d) improving mood and well-being and quality of life, (e) stimulating memories, (f) increasing individualization of care, and (g) reducing caregiver strain (Moos & Bjorn, 2006;Pusey, 2000 ;Woods et al). Evidence supporting interpersonal benefi ts of reminiscence therapy includes enhanced caregiver -patient relation ship, en hanced socializing with others, enhanced feelings of well-being, and providing a family-shared legacy ( Allen, 2009, Allen, Hilgeman, Ege, Shuster, & Burgio, 2008Brooker & Duce, 2000 ;Gibson, 1994 ;Olsen, Hutchings, & Ehrenkrantz, 2000 ;Woods, 1994 ). Woods and colleagues suggest that further clinical studies are required on reminiscence therapy to understand its impacts.…”

Hospice Psychosocial Service Availability and Utilization in the United States

“…There have been a few foundational studies of hospice psychosocial interventions. Results of these studies indicate positive clinical outcomes such as reduction of caregiver stress and anxiety, with increased problem-solving skills as well as quality of life (Allen et al, 2008;Carter, 2006;Csikai et al, 2013;Dimiris et al, 2010;Dimiris et al, 2012;Drossel et al, 2011;Empeño et al, 2011;Gordon, 2013;Keefe et al, 2005;Kilburn et al, 2011;Kruse et al, 2013;McMillan et al, 2006;McMillan et al, 2007;Moody, 2004;Northouse et al, 2007;Northouse et al, 2013;Ott & Lueger, 2002;& Steinhauser et al, 2009;Washington et al, 2012). However, comprehensive hospice psychosocial service delivery and consumer utilization remains understudied (Reese, 2013;Reese & Raymer, 2004).…”

“…Currently, there are few psychosocial interventions that have been developed and tested specifically for the hospice population and none are specific to underserved hospice populations (Allen et al, 2008;Carter, 2006;Csikai et al, 2013); Drossel et al, 2011;Gordon, 2013;Keefe et al, 2005;Kruse, et al, 2013;McMillan et al, 2006;McMillan et al, 2007;Moody, 2004;Northouse et al, 2007;Northouse et al, 2013;Ott & Lueger, 2002, & Steinhauser et al, 2009 Dimiris et al, 2010;Dimiris et al, 2012;Washington et al, 2012). This intervention has shown to have significant practical effects when implemented, but actual dissemination and rigorous practice of the model in the field have yet to be evaluated .…”