Abstract
Background:
Living with a sense of purpose in life is associated with numerous health benefits; however, some individuals with persisting symptoms after concussion are at risk for purpose disruption. The Compass Course is a group-based tele-practice intervention that supports purpose renewal after major health transitions.
Objectives:
To assess the feasibility, acceptability, and implementability of the Compass Course for adults with persisting symptoms after concussion, in preparation for a future randomized controlled trial.
Setting:
Large healthcare system in the Midwestern United States.
Participants:
Convenience sample of 37 adults with persisting symptoms after concussion.
Design:
Non-randomized pilot prospective cohort design.
Intervention:
Compass Course purpose renewal intervention delivered in a group setting via Zoom by an interdisciplinary team of allied health clinician-researchers (occupational therapy, speech-language pathology, psychology).
Main Outcome Measures:
Participants completed Likert scales to rate acceptability of the Compass Course intervention. Treatment fidelity was assessed by tracking the number of key intervention elements presented in each treatment session. Potential benefits of the intervention were assessed using validated measures of purpose and meaning in life.
Results:
Acceptability ratings were strong across the vast majority of participants. Treatment fidelity was strong with nearly perfect adherence to prespecified intervention elements. Participants who completed the intervention had gains across all purpose in life outcomes, with improvements maintained at 2-month follow-up.
Conclusions:
The Compass Course was highly acceptable to participants who completed the intervention; however, there was significant attrition suggesting a need for adaptations to the intervention and to trial procedures. Future work includes further intervention development, and a controlled feasibility trial to estimate treatment effects for a future well-powered clinical trial.
Keywords: aspirations, brain injuries traumatic, feasibility studies, patient-centered care, post-concussion syndrome, posttraumatic growth, psychological well-being, psychosocial intervention, rehabilitation, telemedicine
WHILE MOST INDIVIDUALS who sustain a mild traumatic brain injury (mTBI) or concussion fully recover, a sizeable minority continue to experience a constellation of symptoms that persist more than 3 months after injury.1 This puzzling array of physical, cognitive, and psychological challenges can continue for months to years,2 diminishing quality of life.3 The life disruption accompanying the experience of persisting symptoms after concussion (PSaC) put people at-risk for a disrupted sense of purpose in life, which may have additional cascading negative impacts on well-being.4
Purpose in life is defined as a central aim that organizes a person’s goals and decisions, frames identity and behavior, and provides a sense of meaning in life.5 Having a sense of purpose contributes to longevity, functioning,6 and cognition as people age7; mediates depressive symptoms8 and improves resilience.9 Purpose in life may indirectly improve well-being because it is associated with people’s openness to health-related suggestions,10 reduced engagement in risky behavior,11 and increased engagement in healthy behaviors.12
Purpose disruption is a response to stressors, such as the onset of illness or disability, that upend a person’s business-as-usual life and result in changes to self-concept, daily activities, and expectations for the future.13 Adults with PSaC may experience purpose disruption if, in the aftermath of their injury, they discontinue activities that bring a sense of identity, structure, and meaning to their lives.14 Many report feeling left alone to figure out how to handle identity changes and re-find meaning after injury.14 Theoretical accounts of meaning-making after brain injury suggest that a person’s sense of purpose plays a significant role in their overall well-being and that helping patients to re-assess overarching life aims and address discrepancies between pre- and post-injury life may be fruitful avenues for promoting improved purpose and meaning after brain injury.15–18
Living with purpose is considered to be a modifiable health risk factor and researchers have called for the development and evaluation of purpose renewal interventions.4,19 While such interventions have not previously been studied in adults with PSaC, prior research demonstrates that purpose renewal interventions are feasible and preliminarily efficacious for people recovering from other types of health conditions such as cancer.20–22 Specifically, a purpose intervention called the Compass Course (CC) was found to be acceptable and implementable for participants with early-stage breast cancer20 with early evidence of intervention efficacy.21
Similar to breast cancer survivors, people with PSaC face wide-reaching injury-related changes that can result in purpose disruption.23,24 While evidence-based practices have been established to address the physical and cognitive consequences of mTBI,25,26 there are very few evidence-supported approaches that address the larger existential challenges of recovery like return to purposeful living.27,28 Interventions that foster a person’s sense of purpose may provide fruitful avenues for addressing purpose disruption after mTBI and promote well-being for adults with PSaC.
Planning for a randomized controlled trial (RCT) of purpose renewal intervention after brain injury raises important practical concerns including establishing the degree of interest in purpose renewal intervention, and the implementability and acceptability of online and group-based treatment for adults with PSaC. To begin to address these needs, we evaluated the feasibility of delivering the CC to adults with PSaC who reported a lack of purpose direction.
Trial objectives
In this feasibility trial, the primary objectives were:
To assess interest in purpose renewal intervention in adults with PSaC;
To assess the fidelity of CC implementation across intervention facilitators;
To assess the acceptability of the CC intervention to adults with PSaC.
The secondary objectives of the trial were:
To measure key outcome domains for adults with PSaC including purpose in life, life engagement, and meaning in life (completion rates, estimates, and 95% confidence intervals);
To assess pre- to post-intervention change in individual participants with PSaC to determine whether continued development of the CC toward an eventual definitive clinical trial is warranted.
The study also included tertiary objectives to examine aspects of the intervention that may need to be modified in preparation for a future trial via qualitative analysis of post-intervention focus group data, and to assess relationships between engagement in purposeful behavior and sense of purpose in daily life using ecological momentary assessment (EMA) methods. The qualitative and EMA components of the study will be reported elsewhere.
METHODS
Study design
We report results from a feasibility study with a prospective non-randomized uncontrolled design. Study procedures were approved by the Allina Health Institutional Review Board (#2006262-13) and were registered at ClinicalTrials.gov (NCT05780658). There were no changes to trial methods or eligibility criteria after study commencement. We report methods and results in accordance with reporting guidelines for non-randomized feasibility studies,29 including applicable portions of the CONSORT extension to pilot trials.30 The CC intervention is described using TIDieR guidelines.31
Eligibility criteria
Potential participants whose medical records suggested that they met the following preliminary inclusion criteria were emailed information about the study: (1) evidence of concussion symptoms persisting at least 3 months following a concussion within the past 2 years and (2) rehabilitation services for these symptoms during the past year. Respondents to this invitation were further screened for eligibility. Eligible participants were those who (1) lacked purpose direction based on their response to the Purpose Status Question21; (2) were English-speaking and at least 18 years old; (3) had a computer/tablet with internet access; and (4) owned a smartphone compatible with the homework reminder application (ilumivu). Prospective participants were excluded if they had significant problems with everyday functioning that would interfere with participation as indicated by a Work and Social Adjustment Scale score above 30 during screening.32
Settings and recruitment methods
Participants were recruited from a regional nonprofit healthcare system in the Midwestern United States, with enrollment and data collection via face-to-face synchronous videoconferencing. Participants were recruited from clinical service lines including outpatient clinics and a multidisciplinary brain injury specialty clinic. Participants were identified and recruited in the following ways: (1) an initial medical records search was conducted in collaboration with the health system’s internal quality team; (2) records from this search were screened by a research coordinator and the search strategy refined; (3) once the search strategy was finalized, all identified patients were emailed study information; and (4) interested participants contacted the research coordinator, who conducted additional screening. Qualifying participants were scheduled to complete the consent process over Zoom® until all intervention openings were filled.
Intervention
The Compass Course (CC) is a 12-week group-based psychoeducational purpose renewal intervention, developed based on theoretical and scientific evidence related to psychological well-being,33 purpose and meaning,34,35 and human occupation.36 The overarching goal of the CC is to help participants reclaim a sense of self-grounded purpose in daily life, operationally defined as the intentional use of time and energy in ways that align with one’s values, strengths, and sources of personal meaning in the moments that compose a day.20 Sessions were composed of didactic presentations, group discussions, and experiential group and individual activities, all of which were detailed in a Guidebook issued to participants and an accompanying manual used by facilitators. The Guidebook and facilitator manual are proprietary (compasscourse.net); contact the corresponding author regarding research use of intervention materials.
The CC is composed of eight 2-hour sessions. The first 7 sessions took place weekly, with a 1-month implementation break between sessions 7 and 8. Across sessions, participants identify current values, strengths, and sources of meaning (ie, their inner Compass); use this self-knowledge to create a purpose statement and purpose plan specifying an aspired life direction; define daily choices that would align with this aspired life direction; and learn practices that support making purpose-oriented choices (Table 1). Between group sessions, CC homework emphasized self-exploration and making purpose-informed choices, the latter of which was supported by twice daily notifications from a smartphone application.
TABLE 1.
Overview of compass course intervention sessions
| Session topic | Key content and objectives |
|---|---|
| Session 1: Overview and transitions |
|
| |
| Session 2: Strengths |
|
| |
| Session 3: Values |
|
| |
| Session 4: Sources of personal meaning |
|
| |
| Session 5: Purpose statement |
|
| Session 6: Purpose plan |
|
| Session 7: Purpose practices |
|
| Session 8: Continuing your Compass Course |
|
Each CC treatment group was led by 3 team members: a primary facilitator leading didactic and group activities; a secondary facilitator tracking treatment fidelity; and a “Zoom® producer” providing technical support and managing breakout groups. All team members completed at least 1 full day of training specific to implementing the CC and in research practices. Study team members also take a condensed version of the course, to explore purpose in their own lives and familiarize themselves with the CC content and activities. The CC is highly manualized with specific scripts provided to primary facilitators for both didactic content and leading interactive group activities. Primary facilitators were licensed allied health practitioners (occupational therapy, psychology) who had prior experience serving as secondary facilitators in previous CC studies. Secondary facilitators and Zoom® producers included licensed clinicians (occupational therapy, speech-language pathology) and research-trained staff (PhD research scientists, research coordinators).
The CC was delivered using HIPAA-compliant Zoom® to 4 groups of remote participants. Participants were offered multiple options for session timing: in Fall or Spring, and in the evening (eg, 5-7 pm) or during the day (eg, 11:30 am-1:30 pm). The planned size for each group was 8 to 10 participants. Each session included didactic teaching from shared slides, large group interactive activities, and smaller group interactive break-out activities. Participants met with facilitators prior to the first session to practice using Zoom® features and review group etiquette. To help participants self-manage concussion symptoms, participants were encouraged to turn off video input to minimize visual stimuli and stand to stretch, as needed. On some occasions (eg, illness), participants were absent and were sent a make-up video presenting the missed session’s didactic content and a short interactive questionnaire to demonstrate completion of the make-up content.
There was no individual- or cohort-level tailoring of didactic content. No study-wide modifications were implemented during the course of the intervention. The secondary facilitator tracked treatment fidelity, recording on a checklist whether or not the primary facilitator provided each of 168 key intervention elements identified prior to the start of the study.
Measures
Primary measures
Interest in the CC was measured using response rates to the initial email invitation. Treatment fidelity of the CC was measured by tracking key intervention elements identified prior to the start of the intervention. The acceptability of the CC was measured using a series of Likert scales.
Secondary measures
Potential benefits of the CC were assessed using a number of psychosocial measures that may serve as primary or secondary outcomes for a future RCT. These measures included: the Purpose in Life subscale from the Scales of Psychological Wellbeing (SPWB-PIL),37 the Meaning in Life Questionnaire (MLQ),38 the Life Engagement Test (LET),39 and the Purpose Status Question (PSQ).21 Participants’ self-reported concussion symptoms were assessed using the Rivermead Post-Concussion Symptoms Questionnaire (RPSQ).40 Each secondary measure was administered at enrollment, at conclusion of the intervention, and at 2-month follow-up.
No changes in measures were made after the pilot trial commenced. In the protocol submitted to the IRB, the investigators submitted a plan to consider the CC to have demonstrated potential benefit to participants and strong potential for proceeding to a clinical trial if participants demonstrated significant pre-post change on the MILQ-Presence subscale equivalent to 15%. This decision was made a priori and was informed by examination of outcome data from a previous CC study.21
Sample size determination
Since this was a pilot feasibility study, a power analysis was not performed. A target recruitment of 40 participants was planned, informed by prior studies implementing the CC in women with early stage breast cancer in which significant pre-post intervention change was detected with moderate to large effect sizes in a sample of 35 participants.21
Statistical methods
The study’s primary feasibility, implementability, and acceptability outcomes are presented descriptively. T-tests (continuous data), Fisher’s exact tests (categorical data), and the Mann-Whitney U tests were used to compare characteristics of participants who completed the intervention versus those who withdrew from the study. Because this feasibility trial was not powered for hypothesis testing, formal statistical tests of intervention efficacy were not conducted. Instead, point estimates for change with 95% confidence intervals are reported for group-level analyses of secondary outcomes. The median change on each of the study outcome measures was computed for pre-intervention baseline to post-intervention and from baseline to 2-month follow-up. In addition, we report the percentage of participants who experienced a potential benefit of the intervention (operationally defined as a 15% pre-post increase in the MLQ-Presence).
RESULTS
Participant retention, treatment fidelity, and trial end
A CONSORT diagram illustrating participant flow is presented in Figure 1. Enrollment started March 2023 and ended September 2023, with 37 participants consented. Of these, 7 withdrew prior to attending any treatment sessions. When contacted about their withdrawal, 4 did not respond, 1 indicated they had moved out of state, and 2 indicated problems with virtual conferencing (inadequate bandwidth, symptoms exacerbated by screen time). An additional 7 participants withdrew at some point during their 12-week intervention period, attending 3 sessions, including make-ups, on average (SD = 1.29) before their withdrawal. Three participants who withdrew during the CC reported difficulty completing intervention activities in the context of busy schedules. One reported difficulties with screen time, one expressed dislike of another study participant, and one withdrew without response to follow-up. One additional participant was withdrawn by the principal investigator for engaging in disruptive behavior during group sessions.
Figure 1.
CONSORT participant flow diagram.
For participants who completed the intervention (n = 22), the mean number of sessions attended (including make-ups) was 7.36 (SD = 0.73) out of 8. Participants who completed the intervention responded to an average of 59% of the homework smartphone prompts during the treatment period. The feasibility trial ended, as planned, at the conclusion of the fourth treatment cohort’s follow-up session.
Baseline characteristics
Thirty-seven people with PSaC enrolled in the study, most of whom were middle-aged, Non-Hispanic White women (see Table 2). Most participants had at least some college education. Participants who completed the full CC (“completers”) did not significantly differ at baseline from those who withdrew on any outcome measure, or on concussion chronicity, symptomatology, or functional impacts. Completers were significantly older from those who withdrew and differed significantly on work status at enrollment. On average, completers were 12 months post-concussion (SD = 6.1) and nearly all (95%) reported they were currently receiving clinical rehabilitative services related to their concussion.
TABLE 2.
Baseline characteristics of enrolled participants
| Characteristic | All enrolled participants (n = 37) | Participants who completed the intervention (n = 22) | Participants who withdrew from the intervention (n = 15) | Significance (P) |
|---|---|---|---|---|
| Mean (SD) | Mean (SD) | Mean (SD) | ||
| Age (years) | 50 (11.6) | 55 (10.3) | 42 (9.0) | <.001 |
| Mean (%) | Mean (%) | Mean (%) | ||
| Sex | .69 | |||
| Female | 29 (78) | 18 (82) | 11 (73) | |
| Male | 8 (22) | 4 (18) | 4 (27) | |
| Race | .07 | |||
| Non-Hispanic White | 32 (87) | 20 (91) | 12 (80) | |
| Hispanic/Latino | 2 (5) | 0 (0) | 2 (13) | |
| Asian | 2 (5) | 2 (9) | 0 (0) | |
| Other | 1 (3) | 0 (0) | 1 (7) | |
| Marital status | .73 | |||
| Married/partnered | 24 (65) | 15 (68) | 9 (60) | |
| Single/divorced | 13 (35) | 7 (32) | 6 (40) | |
| Education | .06 | |||
| High school diploma | 1 (3) | 0 (0) | 1 (7) | |
| Some college or Associates Degree | 17 (47) | 11 (50) | 6 (43) | |
| College graduate | 8 (22) | 7 (32) | 1 (7) | |
| Some graduate studies | 3 (8) | 0 (0) | 3 (21) | |
| Completed graduate studies | 7 (19) | 4 (18) | 3 (21) | |
| Missing | 1 | 0 | 1 | |
| Work status at time of enrollment | .03 | |||
| Full-time | 9 (25) | 3 (14) | 6 (40) | |
| Part-time | 2 (6) | 2 (10) | 0 (0) | |
| Retired | 4 (11) | 4 (19) | 0 (0) | |
| On medical leave | 16 (44) | 11 (52) | 5 (33) | |
| Other | 5 (14) | 1 (5) | 4 (27) | |
| Missing | 1 | 1 | 0 | |
| Mean (SD) | Mean (SD) | Mean (SD) | ||
| Chronicity (months) | 12 (6.1) | 11 (6.0) | 12 (6.6) | .90 |
| WSAS | 21 (6.9) | 21 (6.9) | 21 (6.2) | .98 |
| RPSQ | 45 (9.2) | 43 (9.6) | 48 (8.1) | .12 |
| SPWB-PIL | 23 (5.1) 1 missing | 24 (4.9) | 21 (4.8) | .09 |
| MLQ-Presence | 18 (5.3) | 20 (5.2) | 17 (5.1) | .14 |
| LET | 19 (4.2) 3 missing | 19 (3.9) 2 missing | 20 (4.4) 1 missing | .91 |
WSAS: Work and Social Adjustment Scale.
RPSQ: Rivermead Post Concussion Symptoms Questionnaire.
SPWB-PIL: Scales of Psychological Well-being-Purpose in Life Subscale.
MLQ-Presence: Meaning in Life Questionnaire Presence of Meaning.
LET: Life Engagement Test.
Primary objective results
Objective 1
Sixteen percent of potential participants contacted after the medical records search responded to the email invitation. Sixty-seven individuals were successfully contacted via phone for additional screening. Sixty-three percent of those deemed eligible to participate ultimately enrolled in the study. The most common reason for not enrolling after screening was inconvenience of offered group intervention times.
Objective 2
Across all treatment cohorts and sessions, primary facilitators included 671 out of 672 possible intervention elements.
Objective 3
Twenty-two completers completed the experience survey. One participant provided uniformly low ratings across questions; the remaining completers all indicated that the CC was acceptable. On a Likert scale ranging from 1 (not at all satisfied) to 10 (extremely satisfied), overall satisfaction with the CC was high, with an average satisfaction rating of 8.36 (median = 9; mode = 10). Likewise, on Likert scales ranging from 1 (not at all helpful) to 10 (extremely helpful), completers judged the information provided in the CC (mean = 8.13; median = 9; mode = 9), the in-session activities and discussions (mean = 8.22; median = 8.5; mode = 8), and the out-of-session homework (mean = 7; median = 7.5; mode = 8) to be helpful.
Secondary objective results
In line with inclusionary criteria, at baseline all completers were categorized as having “purpose disruption” on the PSQ (ie, responding with either “stalled” [n = 1] or “moving backward” [n = 21]). Post-intervention, nearly all participants (21/22; 95%) indicated purpose direction on the PSQ (ie, responding with either “figuring it out” [n = 14] or “moving forward on a path” [n = 7]). At follow-up, group-level gains on the PSQ were maintained.
Completers made beneficial change across all measured secondary outcomes from pre- to post-intervention. These changes were maintained at 2-month follow-up (Table 3). Completers’ concussion symptoms decreased across the intervention period and at follow-up but remained elevated and clinically significant. Of the 22 completers, 17 (77.3%) experienced potential benefit (defined as a 15% increase in MLQ-Presence score) from the sessions (95% CI for percentage who experienced potential benefit: [54.2%-91.3%]). The median percentage change in MLQ-Presence scores was a 26% increase, ranging from a 3% decrease to a 131% increase, with only 2 of the 22 participants experiencing a decrease.
TABLE 3.
Secondary outcomes at baseline, post-intervention, and 2-month follow-up
| Outcome measure | Baseline to post-intervention | Baseline to 2-month follow-up |
|---|---|---|
| Median change [95% CI] (n) | Median change [95% CI] (n) | |
| SPWB-PIL | 7 [6, 13] (n = 21) | 5 [2, 10] (n = 17) |
| MLQ-Presence | 5.5 [2, 8] (n = 22) | 4.5 [1, 7.5] (n = 18) |
| LET | 5 [4, 8] (n = 20) | 4 [2.5, 6] (n = 16) |
| RPSQ | −4 [−8, −2] (n = 22) | −7 [−12.5, −3] (n = 18) |
SPWB-PIL: Scales of Psychological Well-being-Purpose in Life Subscale.
MLQ-Presence: Meaning in Life Questionnaire Presence of Meaning.
LET: Life Engagement Test.
RPSQ: Rivermead Post Concussion Symptoms Questionnaire.
Unintended consequences
Seven participants failed to attend a single CC session. Several participants reported that their concussion symptoms were exacerbated by screen time associated with the intervention’s virtual implementation. One participant was withdrawn involuntarily by the principal investigator for engaging in disruptive behavior during group sessions. No other unintended consequences were observed.
DISCUSSION
We evaluated the feasibility of a purpose renewal intervention in people with PSaC. The intervention was implementable with strong fidelity to key intervention components. Participants who completed the CC reported that it was acceptable across intervention components (didactic teaching, group activities, homework) and as a group made improvements in purpose measures from baseline to post-intervention which were maintained at 2-month follow-up. Further, most (77%) demonstrated preliminary evidence of potential benefit from the intervention based on an a priori determination that a 15% baseline to post-intervention increase in MLQ-Presence score was suggestive of an intervention benefit. Finally, while all participants lacked purpose direction on the PSQ screener at baseline, 21 of 22 (95%) endorsed a sense of purpose direction at posttest and follow-up.
These results are tempered by limitations that suggest several amendments to trial design. Attrition both prior to and during the intervention raise concerns about the feasibility of the CC as implemented here for the full range of individuals with purpose disruption and PSaC. Notably, those who withdrew tended to be younger than completers and were more likely to be back to full-time employment. A substantial proportion (29%) of participants who withdrew indicated that the weekly intervention sessions and homework were too challenging to juggle alongside other responsibilities. Another 30% withdrew prior to the start of the intervention and did not respond to attempts by the research team to reach them by phone or email. Taken together, the rationales for study withdrawal provided by the participants suggest that ensuring convenient intervention times may be critical to participant retention. The attrition data also suggest that work status may be an important consideration for eligibility for future trials. Importantly, participants who were more likely to remain in the intervention, as it relates to work status, are those whose employment status puts them at higher risk for purpose disruption (ie, unemployed or retired.41) To address attrition in future studies, evidence-based recruitment and retention strategies should be utilized.42,43 In particular, implementation of an information session prior to the consent process might allow for a stronger understanding of study requirements which may reduce the notable attrition we observed prior to the start of intervention.44
Given the uncontrolled design of this initial trial, the improvements observed in the outcome measures should be interpreted with caution and are not evidence of intervention efficacy. The changes we observed come in the context of baseline levels of purpose that are numerically lower than previously reported in the general population, consistent with a baseline state of purpose disruption. For example, prior to the intervention, participants’ MLQ-Presence was approximately 1 standard deviation below the mean reported in the general population.45 Future studies should assess the presence and magnitude of potential treatment effects within a controlled design. Additionally, the outcome measures reported here were developed for use in community dwelling adults and have not been validated in adults with PSaC. Future work should determine the reliability and validity of these measures in this population.
A minority of potential and enrolled participants indicated that the virtual nature of the CC limited its acceptability in some ways. One avenue for addressing this limitation may be future feasibility trials comparing virtual implementation to in-person implementation (a CC service delivery method that has been trialed by our group in the past).20 However, these concerns are mitigated by the observation that participants who did complete the intervention did so even in the presence of significant post-concussive symptoms. The degree of concussion symptomatology (average RPSQ at baseline = 45) in our sample was more than 2 standard deviations greater than the normative mean for adults who have sustained a mild TBI at 12-month post-injury.46 Furthermore, the vast majority (86%) of completers had RPSQ scores at baseline that were greater than 35, previously shown to be predictive of moderate-severe limitations in abilities, adjustment, and participation in daily activities after mild TBI.47 These downstream impacts of symptomatology on functioning were also evident in participants’ WSAS scores, with 50% of completers scoring higher than 20, suggestive of moderate-severe functional pathology.32 Although self-reported concussion symptomatology improved over the course of the intervention, it still remained highly elevated at follow-up (>2 standard deviations above the normative mean).46 Preliminary data from the current study provide evidence that the CC is acceptable and implementable even in the presence of persisting impairment-level symptoms.18 Future trials should address limitations related to potential harms (ie, concussion symptom exacerbation), attrition, and the uncontrolled design of the current study. Additional limitations, like the unblinded nature of the trial design, may not be able to be overcome in a future definitive randomized controlled trial, a limitation common to many rehabilitative interventions.48 Future trials should also include objectives related to acceptability of the intervention to clinician facilitators and estimates of intervention cost to facilitate better planning of eventual implementation in clinical settings. Finally, while the current study examined the acceptability of the CC in adults who had experienced a mild TBI, future work might examine whether the CC in its current or an adapted form might be acceptable and implementable in patients with a history of more significant injury (ie, moderate-severe TBI).
CONCLUSIONS
Adults with PSaC face complicated physical, cognitive, and psychological challenges to finding their way forward after injury and so do the clinicians who want to help them. Even as people with PSaC give voice to their sense of confusion about their ongoing symptoms, unpredictable recovery trajectory, and changes in self-concept,49 clinicians themselves experience much the same, referring to intervention for PSaC as a “minefield” for clinical practice.50 Clinicians have access to best practice recommendations to inform intervention for PSaC-related physical, cognitive, and psychological symptom clusters.25,26,51 However, none of these recommendations specifically address the changes in a person’s sense of purpose that these symptoms may provoke. Thus, many people with PSaC are left to try to address these existential losses alone, if they do so at all.14 Findings from this study suggest that adults with PSaC are interested in reconnecting with purpose in their lives. In the long term, the continued development of purpose renewal interventions may address gaps in rehabilitative care by promoting a return to purposeful living for adults experiencing PSaC.
Footnotes
The authors’ roles and contributions are described using Contributor Roles Taxonomy (CRediT): conceptualization (N.V.C., M.V.R.); methodology (M.V.R., S.C.P.); formal analysis (S.C.P.); investigation (N.V.C., M.V.R., A.K., A.H., K.K., L.L., S.A.S., S.G.W., J.Z.); data curation (N.V.C., A.K.); writing—original draft (N.V.C., M.V.R.); writing—review and editing (N.V.C., M.V.R., A.K., S.C.P., A.H., K.K., L.L., S.A.S., S.G.W., J.Z.); visualization (N.V.C., A.K., S.C.P.); supervision (N.V.C., M.V.R.); project administration (A.K., J.Z.); funding acquisition (M.V.R.).
Authors Mary Radomski and Joette Zola developed and copyrighted the Compass Course Guidebook; neither author has nor will receive any income from participants’ use of the Guidebook in studies conducted on the Compass Course. Mary Radomski and Joette Zola have received less than $5000 from the Guidebook over the past 12 months. For the remaining authors, no conflicts of interest are declared.
This work was supported by the State of MN Office of Higher Education (Grant #214552 to Dr. Radomski) and by the Allina Health Foundation (Grant# 22-24 to Dr. Radomski). These funding sources had no role in the design of this study, or any role during its execution, analyses, interpretation of the data, or decision to submit results for publication.
This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.
The datasets generated during and/or analyzed during the current study are not publicly available but are available from the corresponding author on reasonable request.
Contributor Information
Natalie V. Covington, Email: nvcoving@umn.edu.
Mary Vining Radomski, Email: mary.radomski@allina.com.
Alisa Kocian, Email: alisa.kocian@allina.com.
Sandra Castro-Pearson, Email: sandra.castro-pearson@allina.com.
Amanda A. Herrmann, Email: Amanda.A.Herrmann@HealthPartners.Com.
Kristina Kath, Email: Kristina.kath@yahoo.com.
Libby Lindenfelser, Email: libby.lindenfelser@allina.com.
Sandy Arntson Schwalbe, Email: sandra.schwalbe@allina.com.
Sharon Gowdy Wagener, Email: sharon.gowdywagener@allina.com.
Joette Zola, Email: joettezola@gmail.com.
REFERENCES
- 1.Machamer J, Temkin N, Dikmen S, et al. Symptom frequency and persistence in the first year after traumatic brain injury: a TRACK-TBI study. J Neurotrauma. 2022;39(5-6):358–370. doi: 10.1089/neu.2021.0348. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 2.Theadom A, Starkey N, Barker-Collo S, et al. Population-based cohort study of the impacts of mild traumatic brain injury in adults four years post-injury. PLOS ONE. 2018;13(1):e0191655. doi: 10.1371/journal.pone.0191655. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Voormolen DC, Polinder S, Von Steinbuechel N, Vos PE, Cnossen MC, Haagsma JA. The association between post-concussion symptoms and health-related quality of life in patients with mild traumatic brain injury. Injury. 2019;50(5):1068–1074. doi: 10.1016/j.injury.2018.12.002. [DOI] [PubMed] [Google Scholar]
- 4.Alimujiang A, Wiensch A, Boss J, et al. Association between life purpose and mortality among us adults older than 50 years. JAMA Netw Open. 2019;2(5):e194270. doi: 10.1001/jamanetworkopen.2019.4270. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.McKnight PE, Kashdan TB. Purpose in life as a system that creates and sustains health and well-being: an integrative, testable theory. Rev Gen Psychol. 2009;13(3):242–251. doi: 10.1037/a0017152. [DOI] [Google Scholar]
- 6.Mota NP, Tsai J, Kirwin PD, Sareen J, Southwick SM, Pietrzak RH. Purpose in life is associated with a reduced risk of incident physical disability in aging U.S. military veterans. Am J Geriatr Psychiatry. 2016;24(9):706–714. doi: 10.1016/j.jagp.2016.03.004. [DOI] [PubMed] [Google Scholar]
- 7.Boyle PA, Buchman AS, Barnes LL, Bennett DA. Effect of a purpose in life on risk of incident alzheimer disease and mild cognitive impairment in community-dwelling older persons. Arch Gen Psychiatry. 2010;67(3):304. doi: 10.1001/archgenpsychiatry.2009.208. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 8.Mens MG, Helgeson VS, Lembersky BC, Baum A, Scheier MF. Randomized psychosocial interventions for breast cancer: impact on life purpose. Psychooncology. 2016;25(6):618–625. doi: 10.1002/pon.3891. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Hill PL, Sin NL, Turiano NA, Burrow AL, Almeida DM. Sense of purpose moderates the associations between daily stressors and daily well-being. Ann Behav Med. 2018;52(8):724–729. doi: 10.1093/abm/kax039. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Kang Y, Strecher VJ, Kim E, Falk EB. Purpose in life and conflict-related neural responses during health decision-making. Health Psychol. 2019;38(6):545–552. doi: 10.1037/hea0000729. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 11.Ratner K, Porcelli SE, Burrow AL. Purpose in life, urgency, and the propensity to engage in risky and self-destructive behaviors. Motiv Emot. 2022;46(1):59–73. doi: 10.1007/s11031-021-09915-0. [DOI] [Google Scholar]
- 12.Kim ES, Strecher VJ, Ryff CD. Purpose in life and use of preventive health care services. Proc Natl Acad Sci. 2014;111(46):16331–16336. doi: 10.1073/pnas.1414826111. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Yalom ID. Existential Psychotherapy. New York: Basic Books; 1980. [Google Scholar]
- 14.Sveen U, Søberg HL, Østensjø S. Biographical disruption, adjustment and reconstruction of everyday occupations and work participation after mild traumatic brain injury. A focus group study. Disabil Rehabil. 2016;38(23):2296–2304. doi: 10.3109/09638288.2015.1129445. [DOI] [PubMed] [Google Scholar]
- 15.Park CL. Making meaning of acquired brain injury: resources for functional recovery. In: Petrosini L, ed. Neurobiological and Psychological Aspects of Brain Recovery. Contemporary Clinical Neuroscience. Springer International Publishing; 2023: 333–345. doi: 10.1007/978-3-031-24930-3_15. [DOI] [Google Scholar]
- 16.Gracey F, Evans JJ, Malley D. Capturing process and outcome in complex rehabilitation interventions: a “Y-shaped” model. Neuropsychol Rehabil. 2009;19(6):867–890. doi: 10.1080/09602010903027763. [DOI] [PubMed] [Google Scholar]
- 17.Lee JY, Ready EA, Davis EN, Doyle PC. Purposefulness as a critical factor in functioning, disability and health. Clin Rehabil. 2017;31(8):1005–1018. doi: 10.1177/0269215516672274. [DOI] [PubMed] [Google Scholar]
- 18.Covington NV, Vruwink O, Radomski MV. Purpose in life after brain injury: expanding the focus and impact of interdisciplinary rehabilitation. Am J Speech Lang Pathol. Published online. January 14, 2025:1–12. doi: 10.1044/2024_AJSLP-24-00113. [DOI] [PubMed] [Google Scholar]
- 19.Burrow AL. Beyond finding purpose: motivating a translational science of purpose acquisition. Int J Environ Res Public Health. 2023;20(12):6091. doi: 10.3390/ijerph20126091. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Radomski MV, Swenson KK, Anheluk M, et al. The feasibility of a purpose-renewal intervention after treatment for early stage breast cancer: a brief report. J Psychosoc Oncol. 2020;38(4):501–509. doi: 10.1080/07347332.2019.1692990. [DOI] [PubMed] [Google Scholar]
- 21.Radomski MV, Anheluk M, Carroll GL, et al. Preliminary efficacy of an occupation-oriented purpose in life intervention after breast cancer. Can J Occup Ther. 2022;89(2):115–126. doi: 10.1177/00084174211073264. [DOI] [PubMed] [Google Scholar]
- 22.Radomski MV, Anheluk M, Carroll GL, Kath K, Kreiger R, Zola J. Feasibility of a group-based purpose renewal intervention for cancer survivors via Zoom. OTJR Occup Ther J Res. 2023;43(3):399–407. doi: 10.1177/15394492231156119. [DOI] [PubMed] [Google Scholar]
- 23.van Ierssel J, O’Neil J, Sveistrup H, Marshall S, Graham I. A qualitative study of persons with persistent postconcussion symptoms and clinicians with concussion expertise to inform the development of a concussion-specific questionnaire. Disabil Rehabil. 2021;43(23):3365–3376. doi: 10.1080/09638288.2020.1743772. [DOI] [PubMed] [Google Scholar]
- 24.Payne L, Hawley L, Ketchum JM, et al. Psychological well-being in individuals living in the community with traumatic brain injury. Brain Inj. 2018;32(8):980–985. doi: 10.1080/02699052.2018.1468573. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 25.Bayley MT, Janzen S, Harnett A, et al. INCOG 2.0 guidelines for cognitive rehabilitation following traumatic brain injury: methods, overview, and principles. J Head Trauma Rehabil. 2023;38(1):7–23. doi: 10.1097/HTR.0000000000000838. [DOI] [PubMed] [Google Scholar]
- 26.Quatman-Yates CC, Hunter-Giordano A, Shimamura KK, et al. Physical therapy evaluation and treatment after concussion/mild traumatic brain injury. J Orthop Sports Phys Ther. 2020;50(4):CPG1–CPG73. doi: 10.2519/jospt.2020.0301. [DOI] [PubMed] [Google Scholar]
- 27.Baseotto MC, Morris PG, Gillespie DC, Trevethan CT. Post-traumatic growth and value-directed living after acquired brain injury. Neuropsychol Rehabil. 2022;32(1):84–103. doi: 10.1080/09602011.2020.1798254. [DOI] [PubMed] [Google Scholar]
- 28.Conneeley AL. Transitions and brain injury: a qualitative study exploring the journey of people with traumatic brain injury. Brain Impair. 2012;13(1):72–84. doi: 10.1017/BrImp.2012.3. [DOI] [Google Scholar]
- 29.Lancaster GA, Thabane L. Guidelines for reporting non-randomised pilot and feasibility studies. Pilot Feasibility Stud. 2019;5(1):114. doi: 10.1186/s40814-019-0499-1. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30.Eldridge SM, Chan CL, Campbell MJ, et al. CONSORT 2010 statement: extension to randomised pilot and feasibility trials. BMJ. Published online October 24, 2016;355:i5239. doi: 10.1136/bmj.i5239 [DOI] [PMC free article] [PubMed] [Google Scholar]
- 31.Hoffmann TC, Glasziou PP, Boutron I, et al. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ. 2014;348(mar07 3):g1687–g1687. doi: 10.1136/bmj.g1687. [DOI] [PubMed] [Google Scholar]
- 32.Mundt JC, Marks IM, Shear MK, Greist JM. The work and social adjustment scale: a simple measure of impairment in functioning. Br J Psychiatry. 2002;180(5):461–464. doi: 10.1192/bjp.180.5.461. [DOI] [PubMed] [Google Scholar]
- 33.Ryff CD. Psychological well-being revisited: advances in the science and practice of eudaimonia. Psychother Psychosom. 2014;83(1):10–28. doi: 10.1159/000353263. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 34.Frankl VE. Man’s Search for Meaning. Revised and Updated. New York: Simon & Schuster, Inc.; 1984. [Google Scholar]
- 35.Steger MF. Experiencing meaning in life: optimal functioning at the nexus of spirituality, psychopathology, and well-being. In: Wong PTP, ed. The Human Quest for Meaning. 2nd ed. Routledge; 2012:165–184. [Google Scholar]
- 36.Taylor RR, ed. Kielhofner’s Model of Human Occupation: Theory and Application. 5th ed. Philadelphia: Wolters Kluwer; 2017. [Google Scholar]
- 37.Ryff CD, Keyes CLM. The structure of psychological well-being revisited. J Pers Soc Psychol. 1995;69(4):719–727. doi: 10.1037/0022-3514.69.4.719. [DOI] [PubMed] [Google Scholar]
- 38.Steger MF, Frazier P, Oishi S, Kaler M. The meaning in life questionnaire: assessing the presence of and search for meaning in life. J Couns Psychol. 2006;53(1):80–93. doi: 10.1037/0022-0167.53.1.80. [DOI] [Google Scholar]
- 39.Scheier MF, Wrosch C, Baum A, et al. The life engagement test: assessing purpose in life. J Behav Med. 2006;29(3):291–298. doi: 10.1007/s10865-005-9044-1. [DOI] [PubMed] [Google Scholar]
- 40.King NS, Crawford S, Wenden FJ, Moss NEG, Wade DT. The Rivermead Post Concussion Symptoms Questionnaire: a measure of symptoms commonly experienced after head injury and its reliability. J Neurol. 1995;242(9):587–592. doi: 10.1007/BF00868811. [DOI] [PubMed] [Google Scholar]
- 41.Chen Y, Kim ES, Shields AE, VanderWeele TJ. Antecedents of purpose in life: evidence from a lagged exposure-wide analysis. Cogent Psychol. 2020;7(1):1825043. doi: 10.1080/23311908.2020.1825043. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 42.Liu Y, Pencheon E, Hunter RM, Moncrieff J, Freemantle N. Recruitment and retention strategies in mental health trials – a systematic review. PLOS ONE. 2018;13(8):e0203127. doi: 10.1371/journal.pone.0203127. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 43.Elfeky A, Gillies K, Gardner H, Fraser C, Ishaku T, Treweek S. Non-randomised evaluations of strategies to increase participant retention in randomised controlled trials: a systematic review. Syst Rev. 2020;9(1):224. doi: 10.1186/s13643-020-01471-x. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 44.Kennedy N, Nelson S, Jerome RN, et al. Recruitment and retention for chronic pain clinical trials: a narrative review. PAIN Rep. 2022;7(4):e1007. doi: 10.1097/PR9.0000000000001007. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 45.Steger MF, Kawabata Y, Shimai S, Otake K. The meaningful life in Japan and the United States: levels and correlates of meaning in life. J Res Personal. 2008;42(3):660–678. doi: 10.1016/j.jrp.2007.09.003. [DOI] [Google Scholar]
- 46.Medvedev ON, Theadom A, Barker-Collo S, Feigin V, BIONIC Research Group. Distinguishing between enduring and dynamic concussion symptoms: applying Generalisability Theory to the Rivermead Post Concussion Symptoms Questionnaire (RPQ). PeerJ. 2018;6:e5676. doi: 10.7717/peerj.5676. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 47.De Guise E, Bélanger S, Tinawi S, et al. Usefulness of the Rivermead Postconcussion Symptoms Questionnaire and the trail-making test for outcome prediction in patients with mild traumatic brain injury. Appl Neuropsychol Adult. 2016;23(3):213–222. doi: 10.1080/23279095.2015.1038747. [DOI] [PubMed] [Google Scholar]
- 48.Whyte J. Clinical trials in rehabilitation: what are the obstacles? Am J Phys Med Rehabil. 2003;82(Supplement):S16–S21. doi: 10.1097/01.PHM.0000086992.95121.C2. [DOI] [PubMed] [Google Scholar]
- 49.Snell DL, Martin R, Surgenor LJ, et al. Wrestling with uncertainty after mild traumatic brain injury: a mixed methods study. Disabil Rehabil. 2020;42(14):1942–1953. doi: 10.1080/09638288.2018.1542461. [DOI] [PubMed] [Google Scholar]
- 50.Snell DL, Macleod ADS, Anderson T. Post-concussion syndrome after a mild traumatic brain injury: a minefield for clinical practice. J Behav Brain Sci. 2016;06(06):227–232. doi: 10.4236/jbbs.2016.66023. [DOI] [Google Scholar]
- 51.Rytter HM, Graff HJ, Henriksen HK, et al. Nonpharmacological treatment of persistent postconcussion symptoms in adults: a systematic review and meta-analysis and guideline recommendation. JAMA Netw Open. 2021;4(11):e2132221. doi: 10.1001/jamanetworkopen.2021.32221. [DOI] [PMC free article] [PubMed] [Google Scholar]