Clinical Topics & News

My Life, My Story: Patient Experience Evaluation in Palliative Care


 

Purpose

To assess palliative care patients’ experience completing the My Life, My Story (MLMS) program.

Background

MLMS was developed in 2013 at William S. Middleton Memorial Veterans Hospital. Previous research on MLMS shows benefits for both providers and patients. The program involves working with veterans to write their personal narrative story. VA Connecticut Palliative Care Team has applied the MLMS program in their clinical care with veterans.

Methods

Veterans were administered a 5-point Likert scale questionnaire 2 weeks following completion of the MLMS program. Participants were asked 1 open-ended question assessing effects of MLMS participation, and information on dissemination of their story. Demographic data was collected via chart review.

Data Analysis

Descriptive statistics were run to evaluate participant’s responses to Likert scale items. Thematic analysis was used to assess participants’ qualitative responses.

Results

Participants (N = 19) were largely male (n = 18, 94.7%), White (n = 18, 94.7%), not Hispanic or Latino (n = 19, 100%), with a cancer diagnosis (n = 14, 73.7%). Most participants agreed or strongly agreed that completing MLMS was a good use of time with their provider (n = 19, 100%), would recommend MLMS to other veterans (n = 19, 100%), felt more understood by providers (n = 13, 68.4%), felt more connected to family/friends (n = 16, 84.2%), provided sense of meaning/purpose (n = 15, 78.9%), and felt the process of completing MLMS was easy (n = 17, 89.5%). Veterans shared their story with family (n = 13), friends (n = 6), providers (n = 3), or did not share their story with others (n = 4). The following 7 major themes emerged when asking participants how the process of creating their life story affected them: reflection on life, overall positive experience, cathartic to tell story, foster sense of pride, family legacy, increased provider insight, and negative feedback.

Conclusions/Implications

Veterans had an overall positive experience participating in the MLMS program in palliative care.

MLMS is a low budget, low-risk intervention with positive outcomes for implementation into oncology and palliative care programs across VA healthcare centers.

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