Legacy Intervention Family Enactment (LIFE)
Legacy Intervention Family Enactment (LIFE)
The research activities funded through PAR "Dissemination and Implementation Research in
 Health" in grant R21NR011112 "Legacy Intervention Family Enactment (LIFE)" have been varied
 and highly successful. The LIFE project was designed with three primary objectives. Aim 1 was
 to assess the efficacy of LIFE as delivered by Retired Senior Volunteers (RSVs) on palliative
 care patients': (a) mood and emotional experience; (b) physical symptom burden; and (c)
 experience of meaning. Aim 2 was to assess the efficacy of LIFE as delivered by RSVs on one
 primary family caregiver's: (a) caregiving stress; (b) mood and emotional experience; and (c)
 experience of positive aspects of caregiving. Aim 3 was to assess the ability of RSVs to
 deliver LIFE effectively.

 Although hospice and palliative care social workers frequently use reminiscence and creative
 activities with their patients 16, such interventions need to be more accessible to patients
 and families transitioning from community, hospital, and palliative care settings. If hospice
 or palliative care is not chosen as a treatment option, few means of delivering therapeutic
 reminiscence-based interventions exist. This represents a significant gap in practice and in
 the psychosocial palliative care intervention literature. Kazdin and Blase (2011) argue
 cogently that the community need for mental health services far outstrips the number of
 providers available to assist those in distress. They call strongly for new intervention
 delivery modes targeting prevention and treatment to alleviate suffering. Hence, the purpose
 of the present study was to evaluate the effectiveness of retired senior volunteers (RSVs),
 who are available nationally through the National Senior Corp Program, to deliver a
 three-session reminiscence and creative activity intervention previously found effective in
 improving palliative care patient and caregiver outcomes (Allen, 2009; Allen, Hilgeman, Ege,
 Shuster, & Burgio, 2008). We hypothesized that palliative care patients and their caregivers
 in the RSV-delivered intervention group would demonstrate improved emotional and spiritual
 functioning relative to a supportive contact control group. If successful, this mode of
 treatment delivery (e.g., RSV intervention) would represent a significant step toward
 translation and greater access at earlier disease stages of therapeutic psychosocial
 interventions for individuals near the end of life and their family members.
Data were collected between June 2009 and December 2011 with approval from The University of
 Alabama and the University of Alabama at Birmingham Institutional Review Boards. A variety of
 methods were used for palliative care patient/caregiver dyad recruitment via
 physicians/clinical champions at two university medical centers, one home health agency, five
 assisted living facilities, four congregate apartment sites for older adults and those with
 low income, one continuing care retirement community, and one rehabilitation unit in a local
 skilled nursing facility. Sixty-six percent of dyads were physician-referred. A community
 recruiter and advertisements in community and university print news media were also used.

 Patient/Caregiver Screening and Group Assignment After clinical champions at recruitment
 sites explained the main components of the project, patients provided verbal consent to have
 their contact information forwarded to research staff. Next, research staff contacted
 patients who had expressed interest by phone, described the project in more detail, and,
 after getting verbal consent, administered the screening measures (basic demographics, the
 Vulnerable Elders Survey-13(VES), Telephone Interview for Cognitive Status-modified [TICS-m])
 over the telephone. Eligible patients directly nominated a "family" caregiver (related by
 blood or marriage or fictive kin) for study participation.

 Palliative care patients were eligible if they: (1) were age 55 or older; (2) were living in
 the community or assisted living; (3) had an advanced illness or combination of chronic
 illnesses; (4) received a score of three or greater on the VES; (5) had no more than mild
 cognitive impairment as measured by a score of 17 or greater on the TICS-m; (6) received an
 average of four hours per week of care from a caregiver; and (7) read and spoke English.

 Caregivers were eligible if they: (1) were identified by an eligible palliative care patient;
 (2) were over age of 19 (Alabama's age of majority); (3) were providing an average of four
 hours per week of care for the patient; (4) were cognitively intact as measured by a score of
 28 or greater on the TICS-m; (5) lived nearby; and (6) read and spoke English.

 Dyads were excluded if the patient was receiving hospice care or if either individual had
 schizophrenia or bipolar disorder or had a nursing home admission planned within three
 months.

 Retired Senior Volunteers RSVs. RSVs were participants in the national Senior Corp program,
 part of the Corporation for National and Community Service. They were recruited from (blinded
 for review) and (blinded for review). The RSV program is open to all U.S. citizens,
 nationals, or lawful permanent resident aliens aged 55 or older
 (http://www.nationalservice.gov/programs/senior-corps/rsvp). Within this program, volunteers
 receive standard pre-service orientation and training, supplemental insurance while on duty,
 and, potentially, reimbursement for costs such as travel incurred during service. RSVs
 receive no pay for the services they perform. In this study, RSVs were included if they: (1)
 had a high school education; (2) read and spoke English; and (3) had a car and drove
 independently.

 Procedures This RCT compared the RSV-delivered intervention to a supportive telephone contact
 control delivered by research staff. Prior experience in dealing with terminal illness was
 not an eligibility criterion for RSVs or for research staff. However, RSVs indicated if there
 were any type of advanced chronic illness they would prefer to avoid when being assigned a
 patient-caregiver dyad. Whereas RSVs were over age 55 and had at least a high school
 education, all research staff members were under 40 and had completed at least a bachelor's
 degree in social/behavioral science or nursing. Our objective in this RCT was to determine
 whether RSVs could be trained to effectively deliver the reminiscence and creative activity
 intervention. Thus, the RSVs and research staff did not need to be similar. In translation to
 the community, there will only be dyads receiving the intervention from RSVs.

 Patient and caregiver written informed consent was obtained at baseline. After baseline,
 dyads were stratified by race and site and randomly assigned to the intervention or control
 condition. RSVs were asked to audio record the final intervention session for evaluation of
 treatment acceptability by palliative care patients and caregivers.

 Baseline and post-intervention assessments were completed in separate, concurrent interviews
 with research staff not involved in providing control calls. Post-intervention assessments
 occurred approximately one week after completion of intervention or control contacts, 15 to
 20 weeks post-baseline. Qualitative content analysis was used to examine treatment
 acceptability. Follow-up assessments for both groups were completed 13 to 14 weeks after the
 post-intervention assessments.

 RSV-delivered LIFE Intervention Group.Prior to delivering the manualized intervention, RSVs
 received intensive training (approximately four to six hours over two sessions), that
 included reading materials, structured role-play, and practice opportunities observed by a
 licensed clinical psychologist (blinded for review). Research staff were on call for
 consultation with RSVs. The LIFE Volunteer Interventionist Manual and LIFE Participant
 Notebook have Flesch-Kincaid Grade Levels = 7.0 with a Flesch Reading Ease rating of 68.7%
 and were available in 14-point font. The manual and accompanying workbook consist of: (1)
 instructions about using the steps of problem solving (D'Zurilla & Nezu, 2007) to decide on a
 period of life and creative activity project; (2) constructing a project; (3) evaluation of
 the activity; and (4) an appendix with life review questions for dyads that find generation
 of stories more difficult.

 With the help of the RSV, patient-caregiver dyads in session one narrow the focus to a time
 period in the patients' life that could be adequately represented in one tangible project
 (e.g., scrapbook, cookbook, audiotapes) to represent the patient's values and achievements in
 life. The RSV and dyad actively brainstormed ways to portray the life story; then the RSV
 helped the dyad narrow the focus to one meaningful project, directing the dyad to the LIFE
 Participant Notebook for tips in project construction. The dyad was asked to gather all
 necessary materials (such as pictures, recipes, stories from other family members) and
 actively work on completing a portion of the project between each session with the RSV.

 During the second session, RSVs helped the dyad work on the activity and further use problem
 solving skills. During the third visit, the patient and caregiver shared their activity with
 the RSV, who discussed the dyad's feelings about the process, including a qualitative
 evaluation of the LIFE project and what the family learned when creating it.

 RSVs were carefully trained to monitor dyads' reactions. If either member of the dyad reacted
 in a persistently negative manner to the intervention, the activity was discontinued. RSVs
 were taught to look for depression in the following ways: look for a saddened face, crying,
 shaky voice, statement from the caregiver that the care recipient seems depressed (e.g.,
 downtrodden, sad, blue). The LIFE Volunteer Interventionist Manual includes "Feelings Checks"
 in which the RSVs ask, "How does talking about these memories make you feel?" The average
 treatment fidelity score achieved by RSVs during training was 89.8%.

 Patient-caregiver dyads received $25 to offset the costs of purchasing materials (e.g., photo
 albums, scrapbooks, photograph printing paper, etc.) desired for the project. Research team
 members purchased and delivered materials to mobility restricted dyads.

 Supportive Telephone Contact Control Group. Patients and caregivers each received three
 separate, structured emotional support telephone calls with research staff (M duration = 13
 minutes; SD = 6.5 minutes) to minimize differential drop-out with the RSV intervention group.
 Control callers asked questions of participants and then engaged in supportive conversations
 using empathic listening and reflection. Topics discussed included family, intergenerational
 ties, and important aspects of the patient's life, but structured reminiscence and the
 creative and therapeutic nature of legacy activities were not discussed.
Inclusion Criteria for Palliative Care Patients:

 -  Age 55 or older

 -  Living in the community or assisted living

 -  Had an advanced illness or combination of chronic illnesses

 -  Received a score of three or greater on the Vulnerable Elders Scale

 -  Had no more than mild cognitive impairment

 -  Received an average of four hours per week of care from a caregiver

 -  Read and spoke English.

 Inclusion Criteria for Palliative Caregivers:

 -  Identified by an eligible palliative care patient

 -  Age 19 or older

 -  Providing an average of four hours per week of care for the patient

 -  Cognitively intact

 -  Lived nearby

 -  Read and spoke English.

 Inclusion Criteria for Retired Senior Volunteers:

 -  Participants in the national Senior Corp program

 -  Had a high school education

 -  Read and spoke English

 -  Had a car and drove independently.

 Exclusion Criteria for patient-caregiver dyads:

 -  If the patient was receiving hospice care

 -  If either individual had schizophrenia or bipolar disorder

 -  If the patient had a nursing home admission planned within three months.