Feasibility of Addressing the Spiritual Well-Being of Persons With Multiple Sclerosis: A Mixed-Methods Program Evaluation

Design

In this study, we took a mixed-methods approach to program evaluation in accordance with guidelines recommended by Bowen et al. (2009) to determine the feasibility of the Making Meaning spirituality intervention. The team collected participant qualitative and quantitative data simultaneously at pretest and posttest. The group facilitator completed an observation guide after each session. Two student observers completed a parallel guide during the intervention and at each session’s conclusion (Appendix Table A.1). They all entered data online to a secure drive. The University of Kansas Medical Center institutional review board reviewed and approved this study.

Setting and Participants

The Making Meaning group intervention was offered as an elective in the regular programming at a community center providing services for people with MS in a midwestern U.S. city. Initially designed for people with progressive MS, the program is now open to individuals age ≥18 yr diagnosed with any type of MS who report physical or cognitive disability that limits work or daily activities. The community center’s mission is “to enhance the quality of life for people with progressed MS” (https://www.msachievementcenter.org/program). The MS Quality of Life Index (Consortium of Multiple Sclerosis Centers Health Services Research Subcommittee, 1997) is used at intake. Members come 1 day/wk and participate in small groups facilitated by therapists, a social worker, and health profession students. Groups include exercise, occupational therapy, connections, brain balance, and electives. Attendance records for 42 participants who took part in at least one session were available for analysis. Twenty-two participants provided qualitative data for analysis, and 10 individuals had pretest and posttest scores and attended at least half the sessions, meeting the inclusion criteria for the quantitative outcome measure analysis.

Intervention

The Making Meaning group intervention uses psychoeducational and activity components to address spiritual well-being. It uses the MOW to provide a framework for exploring spiritual practices and how members can incorporate them into daily routines and activities to improve spiritual well-being and coping with chronic illness. Each session includes an opening/centering ritual, a brief check-in with members, an introduction to the creative activity and theme for the session, and discussion questions. During the activity, discussion allows members to explore deeper insights and share how the activity may relate to their spiritual practice (Table 1). Finally, a closing component enables members to share their intentions for continuing or engaging in new spiritual practices in the coming week.

The intervention was offered in eight weekly sessions, each lasting 45 min. Center members attend 1 of 3 days/wk programming is available; therefore, the same group facilitator provided the Making Meaning intervention 3×/wk to three different groups of participants in a midafternoon elective programming slot. Because of various circumstances, including a global health pandemic and inclement weather, an alternate elective was not provided, resulting in all center members who were present participating in the Making Meaning group intervention. The program was designed as an in-person experience. Modifications for virtual delivery were developed in advance of implementation, given the likelihood of center closures because of inclement weather and public health concerns. A doctoral-level occupational therapy student, who collaborated in the development of exemplar activities, served as the group facilitator as part of her capstone experience. Two second-year doctoral-level occupational therapy students served as observers and provided physical assistance as necessary. During implementation, the facilitator received weekly on-site mentorship from the program’s occupational therapist, who has expertise in MS care, and a short debrief after each session with the program’s social worker (3×/wk). The group facilitator also collaborated with Melissa Ross Bowen, who is an occupational therapist and an ordained clergyperson, at the conclusion of each week. Before the program’s onset, the team gathered local resources for direct spiritual care should referral for more intensive spiritual care be necessary.

Data Sources

Quantitative data included participant pre- and posttest scores on the Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being 12-Item Scale (FACIT–Sp–12; FACIT Group, 2021) and attendance records. The FACIT–Sp–12 is a 12-item scaled outcome measure that examines faith, a sense of purpose, and meaning in life. It has been used in previous studies of spiritual intervention for people with MS (Johnson et al., 2011; Nsamenang et al., 2016 ; Sytsma et al., 2020). Qualitative data included participants’ written or typed responses to open-ended questions and the notes and reflections of the group facilitator and two student observers. We were concerned about the vulnerability and fatigue level of our participants and accepted their abbreviated responses to qualitative questions despite the fact that they resulted in an insufficient scope and depth of data and thus qualitative analyses of limited efficacy.

Data Analyses

We analyzed the qualitative data using theoretical thematic analysis (Percy et al., 2015). Bowen completed open coding of all qualitative data units from the facilitator, 2 student observers, and 10 participants who met the inclusion criteria. Although this type of data analysis is driven by feasibility themes, and analytic preconceptions are acknowledged, we made a concerted effort to keep any theme-based language out of the codes at this stage of analysis and used codes that mirrored the participants’ language. Open codes were entered into a table on the basis of the interview guide questions. A second review of the transcript was conducted to ensure all data units were coded. Open codes were then sorted into categories on the basis of similarities in content patterns. We made an effort at this point to remain open to any emerging themes or structures that would be representative of the data. Finally, patterns that corresponded to preexisting themes were grouped with other patterns relating to that theme. The six theoretical themes used for this analysis were (1) acceptability, (2) demand, (3) implementation, (4) practicality, (5) adaptation, and (6) limited efficacy. Proposed foci of feasibility studies served as the source for these theoretical themes (Bowen et al., 2009). An overview of feasibility themes and data sources is provided in Figure 1.

OPEN IN VIEWER

Figure 1.

Feasibility themes and data sources.

Using descriptive statistics, we summarized attendance data from all participants (n = 42). The quantitative analysis included data from 10 participants who attended 4 or more sessions (50%). We calculated Cohen’s d effect sizes to examine the preliminary efficacy of the intervention based on the mean difference between pretest and posttest FACIT–Sp–12 scores.

Feasibility Theme 1: Acceptability

Acceptability is a measure of how participants react to an intervention (Bowen et al., 2009). Qualitative data emerged in the form of two patterns that elucidate this aspect of feasibility: (1) satisfaction and (2) engagement. Quantitative acceptability measures included adherence and retention, including the attendance rate of participants who attended at least one group.

Feasibility Theme 2: Demand

Demand, as a measure of feasibility, addresses the use of the intervention by the intended population (Bowen et al., 2009). Qualitative patterns illuminating the use of this intervention included interest level in and hopes for the group , and reference to the actual or intended use of the intervention content or material outside of the group. Participation level, calculated as a percentage of those present at the center who chose to attend the group, was a quantitative measure of demand.

Feasibility Theme 3: Implementation

Implementation is the extent of success in delivering an intervention as planned and proposed (Bowen et al., 2009). Patterns of qualitative data that define this measure of feasibility include execution strengths and weaknesses, factors influencing implementation ease or difficulty, data collection, and percentage of protocol elements addressed. Bowen compared facilitator notes with the group protocol to generate a percentage of protocol elements that were addressed and a description of any substantive additions or deletions.

Feasibility Theme 4: Practicality

Practicality is the ability of the current context of the intervention to support the delivery of the intervention program (Bowen et al., 2009). Patterns of qualitative data consistent with this measure of feasibility included the time of day providers offered the group, the presence of support staff, group structure, and poor center attendance.

Feasibility Theme 5: Adaptation

Adaptation considers how the intervention performs with changes to accommodate a new format or population (Bowen et al., 2009). This intervention was initially designed to be conducted in person, with virtual options provided as backup. Because of both the public health emergency created by the pandemic and weather closures, providers delivered 9 of 23 groups virtually.

The ability to adapt to virtual delivery allowed the intervention to occur as scheduled and created a space for participants to connect in a time of isolation. One observer noted the following:

Being online and lacking some opportunities for social interaction has impacted a lot of the members, so giving them a chance to reflect on what they’re grateful for and what brings them joy was a good way to create some happiness. Everyone just seemed to be in a positive and good mood as a whole.

No direct participant data addressed virtual adaptation. The group facilitator and observers noted how some in-person activities translated well to the virtual format. Supports for virtual adaptation included increased visual information, step-by-step explanations, and multiple modes of access to materials in familiar formats (email, text, and Facebook). Barriers to virtual adaptation included multiple documents, unfamiliar virtual platforms, difficulty converting the MOW assessment framework for virtual administration, and a lack of hands-on activities. Group participants initiated adaptations as well. One group took the prompt for an in-person creative art activity “What words of wisdom would you like to pass on?” and not only shared the answer to the question in the virtual session but also expanded it. They initiated a discussion of practices associated with their “word of wisdom,” resulting in an engaging online group, despite the lack of hands-on activity.

Feasibility Theme 6: Limited Efficacy

Bowen et al. (2009) suggested that feasibility studies examine limited efficacy to learn whether “a new idea, program, process, or measure show promise of being successful with the intended population” (p. P453). In the present study, we explored the intended effects of the Making Meaning program on key intermediate variables measured by the FACIT–Sp–12. Ten participants attended at least 50% of the sessions and provided full pre- or posttest data. The total FACIT–Sp–12 averages for these participants were 33.5 (SD = 9.0) at pretest (Session 1) and 36.6 (SD = 5.4) at posttest (Session 8). Cohen’s d effect size based on the mean differences from pretest to posttest was moderate (d = 0.42). Mean differences varied by day of delivery, but the low sample size prevented us from exploring group differences. The scope and depth of the qualitative participant data we obtained were insufficient for analyses related to efficacy.