Abstract
Objective: To examine effects of a videoconferencing coach-guided expressive writing program on facilitating grief resolution in adults with spinal cord injury (SCI).
Design: One group pretest – posttest design with a 1-month follow-up.
Setting: Home-based videoconferencing.
Participants: Twenty-four adults with SCI.
Interventions: 10 weekly 1-hour videoconferencing sessions in which participants engaged in expressive writing guided by writing coaches, either individually or in small groups.
Outcome Measures: Self-report questionnaires on measures of grief, emotional distress, depression, stress, trouble falling asleep, meaning and purpose, self-efficacy for managing chronic conditions, ability to participate in social roles and activities, and satisfaction with social roles and activities.
Results: Immediately after completing the program, participants showed significant reductions in measures of severity of grief, trouble falling asleep, and trouble participating in social roles and activities and significant increases in self-efficacy for managing chronic conditions and satisfaction with social roles and activities. Participants maintained benefits at 1-month follow-up, showing significant reductions in measures of severity of grief, trouble falling asleep, and distress related to different difficulties and significant increases in feelings of meaning and purpose in life compared to their scores at pre-program. Post-hoc analysis showed that participants whose injury was sustained within 5 years of study enrollment had significant reductions in change scores of distress and trouble participating in social roles and activities compared to those whose injuries were sustained more than 5 years before the study began.
Conclusion: The videoconferencing coach-guided expressive writing program helps adults with SCI reduce grief intensity and trouble falling asleep and produces a sustained effect. People who sustained a more recent injury seemed to gain more benefits from the program than those whose injuries occurred less recently.
Trial Registration: NCT04721717.
Keywords: Narration, Grief, Internet-based intervention, Health promotion. Spinal cord injury
Introduction
After spinal cord injury (SCI), people often experience grief as a result of the life-changing aftermath of injury such as a loss of physical mobility, social or occupational role function (i.e. identity), and life goals (1–4). Grief is often burdensome, causes intense emotional suffering, and negatively impacts on an individual’s quality of life (5). Grieving associated with losses after SCI differs from bereavement in that the disability from SCI is a life-long reminder of the person’s loss (2, 6). Grieving process related to SCI is not only individualized, it is also complex (7). It involves highs and lows and changes over time that often follow a nonlinear, reverberating, iterative trajectory across different stages of grief (8, 9).
The unresolved emotions of grief will likely resurface when people with SCI are confronted with complications of their injury or additional health issues, architectural barriers, or psychosocial stressors such as disability discrimination (2, 9, 10). Therefore, people with SCI often view grief as something they must cope with every day for the rest of their lives (1, 11, 12); at the same time, they often avoid talking about their feelings of grief (2), which may not be the best coping strategy as holding back one’s feelings can lead to more grief over time (13).
Some people with SCI use effective, healthy coping strategies to facilitate their grieving (14). Receiving mental health services can help people with SCI resolve injury-related grief, build a meaningful new life, and cope with intermittent low points so they do not regress to an earlier stage of grief (15). However, this population’s utilization of these services is low (16) because current preventive health care services for community-dwelling people with SCI focus primarily on physical health and provide few mental health supports to assist with grief resolution (17). Faced with a paucity of mental health services, people with SCI often struggle through the grieving process alone (12).
People with SCI have a high prevalence of distress and subclinical depression, which highlights the need for low-cost, low-intensity, community-based support programs that provide a stepped-care approach to address and meet the psychosocial needs of these individuals and promote their progress toward grief resolution (18–20). Increasing evidence suggests that creative arts, including expressive writing, can decrease symptoms of emotional distress and facilitate progress through the grieving process, both of which can help people with chronic conditions to adjust better to their changed lives (21–25).
Expressive writing is a psychological intervention in which people write about their thoughts, emotions, and experiences to internally process and heal from traumatic or stressful life events (26). This therapeutic technique, sometimes called writing to heal, helps people adjust to traumatic experiences or illness and reduces grief intensity in people who are bereaved due to the loss a loved one (24, 27, 28). Research over the last 35 years has established that people with chronic conditions gain benefits from writing about emotionally traumatic or stressful life experiences; specifically, expressive writing reduces their health care use and self-reported symptoms of illness and improves their health status and well-being (24, 29). A meta-analysis study revealed that adults who had experienced or were experiencing a traumatic event and who engaged in writing that involved expressing feelings and emotions about those events showed a 23% improvement in health (i.e. physical health, psychological well-being, physiological function, and general functioning) compared with individuals writing about a neutral event (30).
People with SCI can use expressive writing as an outlet to explore and express feelings and emotions that arise from losses related to limb paralysis (8). Expressive writing helps writers progress toward grief resolution because the technique allows individuals to articulate and share their unresolved feelings of grief, lessen feelings of grief-related distress, feel empowered to cope with grief, and increase acceptance of their losses (8). However, only a few studies have investigated the effects of expressive writing on people who have experienced a sudden loss of physical abilities (31). A related study examined the effects of a 12-session songwriting program (1 h, twice weekly) for improving the self-concept and well-being of 10 people with a recently acquired brain injury or an SCI (21). The study results showed the program helped these individuals grieve their losses and build a healthier self-concept (21). In a study focused specifically on the effects of expressive writing on the loss of physical ability, Mankad and Gordon (25) found that three 20-minute sessions of expressive writing per day attenuated grief-related responses in nine elite athletes with long-term injuries.
Although expressive writing has the potential to benefit people with SCI by supporting their grief journey and promoting their psychosocial health, to our knowledge, no studies have examined the impact of an expressive writing program on this population. This study aimed to help fill that gap by assessing the feasibility of a videoconferencing coach-guided expressive writing program for facilitating grief resolution in adults with SCI.
Methods
Research design
This study used a one-group pretest – posttest design with a 1-month follow-up to examine the effects on adults with SCI of a 10-week coach-guided expressive writing program conducted via Zoom videoconferencing, either individually or in small groups.
Participants
Participants were recruited based on the following eligibility criteria. Inclusion criteria were: (1) community-dwelling adults (aged 18 years or older) living with SCI; (2) able to communicate verbally or through writing; (3) access to a computer or smartphone and home internet; and (4) able to understand the nature of study participation and provide informed consent. Exclusion criteria were: (1) congenital etiologies of non-traumatic SCI; (2) presence of cognitive or sensory deficits such as blindness or language barriers (e.g. non-English communicator) that might impede participation in the study and completion of its outcome measures; or (3) exhibition of overt psychotic symptoms (e.g. hallucinations, delusions, or thought disorders).
We recruited participants through various avenues of advertisement, including flyers posted on social media sites, such as Facebook groups for individuals with SCI and transverse myelitis; community agencies that serve people with physical disabilities; word of mouth; and direct mailing to patients in a university rehabilitation center database. At least 27 participants are recommended as the minimum sample size for feasibility trials with a medium effect size of 0.5 and 80% statistical power at a significance level of 0.05, one tailed (32).
Fifty individuals from 23 states expressed interest in the expressive writing program, 31 provided consent, and 30 completed the pre-program questionnaire. Three withdrew from the study, either after completing the first session or without participating in any session, and one person with spina bifida did not meet inclusion criteria. The remaining 26 participants completed 10 sessions of the expressive writing program, but two did not complete any post-program assessments. An additional five participants did not complete the 1-month follow-up evaluation. In sum, 24 participants completed questionnaires pre-program and immediately post-program and 19 completed questionnaires at all three time points for evaluation: pre-program, immediately post-program, and at 1-month follow-up.
Procedures
Individuals who were interested in participating in the study contacted the project coordinator, who provided information about the study, screened for eligibility, and obtained informed consent forms. Following the provision of informed consent and completion of the pre-program evaluation (i.e. self-report questionnaires of outcome measures), participants took part in 10 weekly expressive writing sessions guided by professional teaching artists (i.e. writing coaches) through Zoom videoconferencing. Participants completed the same questionnaires pre-program, immediately post-program and at 1-month follow-up. Data collection and program implementation began in mid-January 2021 and ended in mid-February 2022. The study was conducted with Institutional Review Board (IRB) approval from the University of Alabama at Birmingham (protocol # IRB-300005546). The trial was registered at ClinicalTrials.gov (NCT04721717) before the enrollment of the first participant.
The expressive writing program
Two writing coaches co-developed the 10-week expressive writing program, which was based on Dr. James Pennebaker’s seminal work “Confronting a Traumatic Event. Toward an Understanding of Inhibition and Disease”(26), his book “Expressive Writing: Words that Heal” (27), and a systematic writing program for facilitating the grieving process for bereaved adults (33). The two writing coaches were college-trained artist. One is a certified compassionate listening facilitator, and has completed the course work for the Leading Others in Writing for Health program hosted at Duke University; the other is a certified listener poet by The Good Listening Project, and has received training from Duke Health & Wellbeing in writing for health, and trauma-informed arts practices. Before enrolling individuals into our main study, we evaluated the acceptability and feasibility of the newly developed expressive writing program with two participants. These two participants started their 10-week sessions in early November 2020 and completed it in early January 2021. The two participants, who were not included in the analyses for the main study, provided suggestions for improving the expressive writing program experience for people with SCI. They suggested that writing coaches provide additional writing prompts for personal writing sessions outside to allow participants to stay connected with each other after the final session, as well as a list of mental health resources they could use to seek assistance during a mental health crisis.
The videoconferencing coach-guided expressive writing program protocol used different forms of writing, such as poetic, affirmative, and transactional, structured around emotional disclosure, cognitive appraisal, benefit finding, looking to the future, and reflection. In a typical session, the writing coach introduced participants to a new writing theme, gave them at least 20 min to write on the theme, and then facilitated an undirected supportive interaction in which group members shared their post-writing reflections with each other. Participants who are physically unable to use a device (keyboard, stylus, or pen) to write their stories can use speech-to-text software to generate their writing. All participants in this feasibility study were able to use an input device / program to write their story. At the end of each session, the writing coach encouraged participants to continue their expressive writing on their own. Table 1 provides an outline of each weekly session in the 10-week expressive writing program.
Table 1.
Overview of the Expressive Writing Sessions.
| Week | Theme/Activities |
|---|---|
| 1 |
Introductions Description: Expressive Writing Writing: Writing about the participant’s current life situation. |
| 2 |
Continue Getting to Know Each Other Description: Expressive Writing Writing: Additional writing about the participant’s current life situation. |
| 3 |
Emotional Disclosure Description: Expressive Writing Writing: Writing about the participant’s feelings of living with an SCI. |
| 4 |
Cognitive Appraisal Description: Expressive Writing/Mindful Expression Writing: Participants will write a response to this question: What does having an SCI mean to you? |
| 5 |
Cognitive Appraisal continued Description: Expressive Writing/Poetic Writing: Participants will write a response to this question: What challenges have you overcome? |
| 6 |
Benefit Finding Description: Expressive Writing/Affirmative Writing: Writing about what participants have learned about themselves from going through this traumatic experience. Participants will write a response to this question: What has SCI taught you? |
| 7 |
Benefit Finding continued Description: Expressive Writing/Affirmative continued Writing: Participants will write a response to this question: Are there ways in which you can use your experience to help others? |
| 8 |
Looking to the Future Description: Expressive Writing/Transactional (forgiveness letters) Writing: Writing about the changes the participant would need to make to feel fewer negative emotions and more happiness and joy. |
| 9 |
Looking to the Future continued Description: Expressive Writing/Transactional Writing: Participants will write a response to this question: How have you dealt with this trauma? |
| 10 |
Writing on Writing: Reflection on the 10-week experience Celebration: Sharing (or not); closing and final ritual |
Note: Reflective Writing is included at the end of each session.
Program implementation
After a set of three participants completed the baseline questionnaire, the project coordinator sent their contact information to one of the two writing coaches. The writing coach and participants arranged meeting times for each of the program’s 10 online weekly sessions, which lasted about an hour each. The small closed expressive writing groups included the same writing coach and participants for all 10 weeks of the expressive writing program (34). This format encouraged participants to develop rapport and build accountability and deeper relationships with their fellow group members (35). Occasionally, it was not possible to find a common available time for the three participants assigned to same schedule of writing sessions. When this occurred, the writing coach conducted the writing session with two participants or with an individual participant. Similarly, when three participants were not available for a group, sessions included one to two participants and the writing coach. Finally, some participants were not comfortable in a group setting and interacted with the coach individually.
The writing coaches offered flexible schedules to accommodate the needs of each group member. For example, if a group member could not join one of the scheduled weekly sessions, the coach conducted an individual session with them during the same week as the missed session. This ensured that participants were prepared to rejoin the group in the following session. This adaptation allowed every group member to progress through the program at the same pace. In addition, when there was a poor internet connection during a particular meeting, the participants and coach regrouped at another time.
Data collection
Data was collected pre-program, immediately post-program and at 1-month follow-up using self-report questionnaires to examine the effects of the program on adults living with SCI. The following 10 evaluation measures were used: 1. Grief and Loss (36), which is the primary outcome measure, 2. Impact of Event Scale-6 (37), 3. Emotional Distress – Depression (38), 4. Perceived Stress Scale (39), 5. Sleep Disturbance (38), 6. Sleep Impact (40), 7. Meaning and Purpose (41), 8. Self-Efficacy for Managing Chronic Conditions – Managing Emotions (38), 9. Ability to Participate in Social Roles and Activities (38), and 10. Satisfaction with Social Roles and Activities (38). These 10 measures evaluate broad psychosocial health areas that can be affected by expressive writing. Five of the measures were drawn from the Patient-Reported Outcomes Measurement Information System (PROMIS) (42, 43) and have been validated specifically in people with neurological disorders such as SCI.
The Spinal Cord Injury – Quality of Life (SCI-QOL) Grief and Loss – Short form (36) is a 9-item measure of an individual’s emotional reactions in the past 7 days to grief, such as anger, guilt, anxiety, sadness, and despair, using a 5-point scale: 1 = never to 5 = always. The scores range from 9 to 45. Higher scores reflect a higher degree of grief and loss. The form has been shown to have good test – retest reliability in people with SCI (36).
The Impact of Event Scale – 6 (37) is a 6-item measure of an individual’s distress in the past 7 days related to different difficulties, using a 5-point scale: 0 = not at all to 4 = extremely. The scores range from 0 to 24. Higher scores reflect greater distress.
The Emotional Distress – Depression – Short Form 8b, a part of the PROMIS Item Bank v1.0 (38), is an 8-item measure of an individual’s emotional distress (depression) in the past 7 days, using a 5-point scale: 1 = never to 5 = always. The scores range from 8 to 40. Higher scores reflect a higher degree of emotional distress (depression)
The Perceived Stress Scale (39) is a 10-item measure of how often an individual experienced stress in the past month, using a 5-point scale: 1 = never to 5 = very often. Four positively stated items require reversed coding. The scores range from 10 to 50. Higher scores reflect a higher frequency of stress.
The Sleep Disturbance – Short Form 4a, a part of the PROMIS Item Bank v1.0 (38), is a 4-item measure of an individual’s sleep problems or quality in the past 7 days, using a 5-point scale: 1 = not at all to 5 = very much or 1 = very good to 5 = very poor. Two positively stated items require reversed coding. The scores range from 4 to 20. Higher scores reflect greater problems with sleep.
The Sleep Impact – Short Form, a part of the Adult Sickle Cell Quality of Life Measurement Information System v2.0 (40), is a 5-item measure of an individual’s trouble falling asleep in the past 7 days, using a 5-point scale: 1 = always to 5 = never. One positively stated item requires reversed coding. The scores range from 5 to 25. Higher scores reflect less trouble falling asleep.
The Meaning and Purpose (Ages 18+) – Fixed Form, a part of the National Institutes of Health Toolbox Item Bank v1.0 (41), is a 7-item measure of an individual’s meaning and purpose in life, using a 5-point scale:1 = strongly disagree to 5 = strongly agree. The scores range from 7 to 35. Higher scores reflect greater meaning and purpose in life.
Self-Efficacy for Managing Chronic Conditions – Managing Emotions – Short Form 4a, a part of the PROMIS Item Bank v1.0 (38), is a 4-item measure of an individual’s self-efficacy for managing chronic conditions, using a 5-point scale: 1 = I am not at all confident to 5 = I am very confident. The scores range from 4 to 20. Higher scores reflect greater confidence in managing chronic conditions.
The Ability to Participate in Social Roles and Activities – Short Form 4a, a part of the PROMIS Item Bank v2.0 (38), is a 4-item measure of an individual’s trouble participating in social roles and activities, using a 5-point scale:1 = always to 5 = never. The scores range from 4 to 20. Higher scores reflect less trouble participating in social roles and activities.
The Satisfaction with Social Roles and Activities – Short Form 4a, a part of the PROMIS Item Bank v2.0 (38), is a 4-item measure of an individual’s satisfaction with social roles and activities, using a 5-point scale:1 = not at all to 5 = very much. The scores range from 4 to 20. Higher scores reflect greater satisfaction with social roles and activities.
Data analysis
We used descriptive statistics to summarize the characteristics of study participants. The scores of measured differences in several pairs of outcome measures were not normally distributed, as indicated by a p-value of < .05 in the Shapiro – Wilk test. Therefore, a non-parametric statistic, the Wilcoxon signed-rank test, was used to analyze the data. Since five of the 24 participants did not complete their 1-month follow-up evaluation, the paired data set of pre-program and 1-month follow-up was 19. Two sets of Wilcoxon signed-rank tests were performed on the outcome measures. One set was conducted to test the hypothesis that participants’ outcome measure scores would show significant improvement immediately post-program compared to pre-program scores, and the other set was performed to test the hypothesis that participants’ outcome measure scores would show significant improvement at 1-month follow-up compared to pre-program scores. Statistical significance was set at p < .05, one-sided. Because of the exploratory nature of the study, no adjustment of p values was conducted for multiple statistical comparisons of the outcome measures (44). All statistical data analyses were conducted using the IBM SPSS Statistics 28.0. The effect size of the program on the outcome measures was calculated immediately post program and at 1-month follow-up. Effect size r was calculated by dividing the z statistic by the square root of the total number of participants within each pair of comparison and then taking the absolute value (45). Magnitude of effect size was considered small if it was between .1 and < .3, medium if it was between .3 and < .5, and large if it was ≥ 5 (46).
Post-hoc analyses using the Mann – Whitney U test were performed to evaluate significant differences in the median values of change scores in the outcome measures between participants whose injury was within 5 years of study enrollment and those whose injuries occurred earlier and between participants who were in group sessions with others with an SCI and a writing coach and participants whose sessions involved only themselves (i.e. individuals) and the writing coach. Statistical significance was set at p < .05, two-sided.
Results
Characteristics of the participants
Table 2 shows characteristics of the 24 participants. The majority were white (19, or 79.2%) and female (17, or 70.8%). The mean and standard deviation (SD) age of the participants were 51 ± 12 years (range: 34–76 years). Eighteen (75%) had sustained a traumatic SCI and had a bachelor’s degree or more advanced degree. Ten were quadriplegic, 12 were paraplegic, and two were monoplegic (paralysis in one lower limb). Five lived alone and 10 received disability assistance. The mean and SD years post injury were 17.3 ± 13.1 years (range, 1.4–52 years), with six participants who had sustained the injury within 5 years of study enrollment. All 24 participants completed 10 sessions and evaluations at pre-program and immediately post-program, and 19 completed all three evaluations (i.e. pre-program, immediately post-program, and 1-month follow-up). Three cohorts had three participant group members and four cohorts had two group members; the remaining participants received individual writing guidance from the coach.
Table 2.
Characteristics of Participants (n = 24).
| Variables | Number | Percent |
|---|---|---|
| Sex | ||
| Female | 17 | 70.8% |
| Male | 7 | 29.2% |
| Race | ||
| White | 19 | 79.2% |
| Black | 3 | 12.5% |
| Asian | 1 | 4.2% |
| Mixed | 1 | 4.2% |
| Marital status | ||
| Married | 9 | 37.5% |
| Divorced | 7 | 29.2% |
| Never married | 7 | 29.2% |
| Widow | 1 | 4.2% |
| Living situation | ||
| Alone | 5 | 20.8% |
| With someone | 19 | 79.2% |
| Education | ||
| Less than high school | 1 | 4.2% |
| Vocational school | 1 | 4.2% |
| Some college | 4 | 16.7% |
| Bachelor’s degree | 9 | 37.5% |
| Post-graduate degree | 9 | 37.5% |
| Employment | ||
| Full-time | 6 | 25.0% |
| Part-time | 4 | 16.7% |
| Unemployed | 2 | 8.3% |
| Homemaker | 1 | 4.2% |
| Retired | 1 | 4.2% |
| Receiving disability assistance | 10 | 41.7% |
| Diagnosis | ||
| Traumatic spinal cord injury | 18 | 75.0% |
| Transverse myelitis | 4 | 16.7% |
| Ependymoma in spinal cord | 1 | 4.2% |
| Neurosarcoidosis in spinal cord | 1 | 4.2% |
| Level of injury | ||
| Paralysis in one lower limb | 2 | 8.3% |
| Paraplegia | 12 | 50% |
| Quadriplegia | 10 | 41.7% |
Effects of the coach-guided videoconferencing expressive writing program on adults with SCI
Tables 3 and 4 show the results of comparisons of pre-program, immediately post-program, and 1-month follow-up scores in outcome measures. Except for self-efficacy for managing chronic conditions at 1-month follow-up, the mean scores of all measures at post-program (immediately and at 1-month follow-up) showed improvements compared to pre-program scores. The Wilcoxon signed-rank test revealed statistically significant reductions immediately post-program in measures of severity of grief and loss (z = 2.12, p = .02, r = .43), trouble falling asleep (z = 2.16, p = .02, r = .44), and trouble participating in social roles and activities (z = 2.14, p = .02, r = .44) and significant increases in self-efficacy for managing chronic conditions (z = 2.12, p = .02, r = .43) and satisfaction with social roles and activities (z = 2.31, p = .01, r = .47). At 1-month follow-up, the Wilcoxon signed-rank test revealed statistically significant reductions in measures of severity of grief and loss (z = 1.94, p = .03, r = .45), trouble falling asleep (z = 2.05, p = .02, r = .47), and distress related to different difficulties (z = 1.77, p = .04, r = .41) and increased feelings of meaning and purpose in life (z = 1.69, p = .046, r = .39) compared to pre-program scores. We observed no statistically significant improvements in other outcome measures immediately post-program or at 1-month follow-up.
Table 3.
Pre-program and Post-program Comparisons in Outcome Measures (n = 24).
| Variables | Pretest (M ± SD) | Median | Min | Max | Posttest (M ± SD) | Median | Min | Max | Z-value | p | Effect size (r) |
|---|---|---|---|---|---|---|---|---|---|---|---|
| Grief (-) | 2.56 ± 1.18 | 2.56 | 1.00 | 4.89 | 2.25 ± 0.98 | 2.06 | 1.00 | 4.33 | 2.12 | 0.02* | 0.43 |
| Impact event (-) | 1.15 ± 1.02 | 0.92 | 0.00 | 3.00 | 1.07 ± 0.78 | 0.92 | 0.00 | 2.67 | 0.35 | 0.36 | 0.07 |
| Depression (-) | 2.14 ± 0.90 | 2.06 | 1.00 | 4.38 | 1.96 ± 0.82 | 1.75 | 1.00 | 4.00 | 1.43 | 0.08 | 0.29 |
| Stress (-) | 2.73 ± 0.92 | 2.65 | 1.30 | 4.40 | 2.50 ± 0.82 | 2.35 | 1.00 | 3.90 | 1.43 | 0.08 | 0.29 |
| Sleep Disturb (-) | 3.07 ± 0.85 | 3.00 | 2.00 | 5.00 | 2.95 ± 0.70 | 2.75 | 2.00 | 4.00 | 0.46 | 0.32 | 0.09 |
| Sleep Impact | 3.41 ± 1.26 | 3.50 | 1.00 | 5.00 | 3.82 ± 1.00 | 4.00 | 1.00 | 5.00 | 2.16 | 0.02* | 0.44 |
| Meaning & Purpose | 3.72 ± 0.95 | 3.79 | 1.14 | 5.00 | 3.80 ± 0.87 | 3.86 | 1.14 | 5.00 | 0.61 | 0.27 | 0.12 |
| Self-efficacy | 3.58 ± 0.99 | 3.75 | 1.25 | 5.00 | 3.81 ± 1.00 | 4.00 | 1.75 | 5.00 | 2.12 | 0.02* | 0.43 |
| Participation | 2.83 ± 1.09 | 3.00 | 1.00 | 5.00 | 3.19 ± 1.02 | 3.13 | 1.50 | 5.00 | 2.14 | 0.02* | 0.44 |
| Satisfactory | 2.97 ± 1.11 | 3.00 | 1.00 | 5.00 | 3.36 ± 1.07 | 3.29 | 1.00 | 5.00 | 2.31 | 0.01* | 0.47 |
Note. A minus sign in parentheses indicates that a score decline in the variable means improvement.
*Statistically significant at p < 0.05, one-tailed.
Table 4.
Pre-program and 1-month Follow-up Comparisons in Outcome Measures (n = 19).
| Variables | Pretest (M ± SD) | Median | Min | Max | Posttest (M ± SD) | Median | Min | Max | Z-value | p | Effect size (r) |
|---|---|---|---|---|---|---|---|---|---|---|---|
| Grief (-) | 2.56 ± 1.24 | 2.56 | 1.00 | 4.89 | 2.20 ± 1.00 | 2.22 | 1.00 | 4.00 | 1.94 | 0.03* | 0.45 |
| Impact event (-) | 1.08 ± 1.04 | 0.83 | 0.00 | 2.83 | 0.74 ± 0.70 | 0.50 | 0.00 | 2.17 | 1.77 | 0.04* | 0.41 |
| Depression (-) | 2.10 ± 0.93 | 2.13 | 1.00 | 4.38 | 1.92 ± 0.91 | 1.75 | 1.00 | 3.88 | 0.91 | 0.18 | 0.21 |
| Stress (-) | 2.66 ± 0.98 | 2.50 | 1.30 | 4.40 | 2.56 ± 0.85 | 2.40 | 1.30 | 4.00 | 0.14 | 0.44 | 0.03 |
| Sleep Disturb (-) | 2.99 ± 0.94 | 3.00 | 2.00 | 5.00 | 2.91 ± 0.82 | 2.75 | 2.00 | 4.25 | 0.00 | 0.50 | 0.00 |
| Sleep Impact | 3.48 ± 1.39 | 3.60 | 1.00 | 5.00 | 3.95 ± 1.08 | 4.20 | 1.80 | 5.00 | 2.05 | 0.02* | 0.47 |
| Meaning & Purpose | 3.74 ± 0.99 | 3.71 | 1.14 | 5.00 | 3.94 ± 0.93 | 4.29 | 2.14 | 5.00 | 1.69 | 0.05* | 0.39 |
| Self-efficacy | 3.66 ± 1.00 | 4.00 | 1.25 | 5.00 | 3.62 ± 1.11 | 3.75 | 1.75 | 5.00 | 0.29 | 0.61 | 0.07 |
| Participation | 2.93 ± 1.14 | 3.00 | 1.00 | 5.00 | 3.20 ± 1.06 | 3.25 | 1.00 | 5.00 | 1.45 | 0.07 | 0.33 |
| Satisfactory | 3.06 ± 1.16 | 3.00 | 1.00 | 5.00 | 3.24 ± 1.17 | 3.50 | 1.00 | 5.00 | 1.14 | 0.13 | 0.26 |
Note. A minus sign in parentheses indicates that a score decline in the variable means improvement.
*Statistically significant at p < 0.05, one-tailed.
Post-hoc analyses
The Mann – Whitney U test indicated that participants had sustained an SCI within 5 years of study enrollment showed significant reductions in the change scores of the Impact of Event Scale – 6 (37) (i.e. distress related to different difficulties) immediately post-program (z = 2.58, p = .01, r = .54) and at 1-month follow-up (z = 2.66, p = .006, r = .61) and improvements in participating in social roles and activities immediately post-program (z = 2.12, p = .03, r = .44), and at 1-month follow-up (z = 2.38, p = .01, r = .55) compared to those whose injury occurred earlier. In addition, participants who had sustained injuries within 5 years of study enrollment showed significant improvements at 1-month follow-up in change scores of emotional distress – depression (z = 2.88, p = .002, r = .66), trouble falling asleep (z = 2.01, p = .04, r = .46), and feelings of meaning and purpose in life (z = 2.01, p = .04, r = .46) compared to those whose injuries occurred earlier. There were no statistically significant differences in the change scores of other outcome measures for participants whose injury was sustained within 5 years of study enrollment compared to those whose injury occurred earlier.
The Mann – Whitney U test also revealed that participants in a groups of two or three members showed significant reductions in change scores of measures of grief and loss from pre-program to 1-month follow-up compared to the grief and loss change scores of participants who only worked one on one with the writing coach (z = 2.42, p = .01). There were no statistically significant differences in the change scores of other outcome measures for participants engaged in group sessions versus individual expressive writing sessions.
Discussion
To our knowledge, this was the first study to examine the feasibility of a coach-guided videoconferencing expressive writing program for adults with SCI. The study findings showed that the expressive writing program is a feasible channel through which the therapeutic benefits of expressive writing can be made accessible to people with SCI. This is consistent with existing literature that has found internet- or smartphone-based interventions that involve writing assignments on specific aspects of loss are a feasible treatment approach to reduce severity and symptoms of grief in bereaved adults (28). Results of this study were congruent with two case reports that found expressive writing can help people with SCI grieve their losses (21) and attenuate grief-related responses in people who have experienced a traumatic loss of physical ability (25). Results of the present study are also supported by the positive psychosocial health findings of previous expressive writing studies for individuals with chronic conditions (29).
Although this feasibility study’s sample size was small, its results are promising. Specifically, participants experienced statistically significant improvements with medium effect sizes in grief reduction (the primary outcome) and trouble falling asleep immediately post-program and at 1-month follow-up. Findings also showed that immediately post-program, the expressive writing program produced medium effect sizes for greater confidence in managing chronic conditions, less trouble participating in social roles and activities, and greater satisfaction with social roles and activities. At 1-month follow-up, we observed significant delayed improvements with medium effect sizes in reduction in distress related to different difficulties and increases in feelings of meaning and purpose in life.
Fewer significant improvements in outcome measures were found at 1-month follow-up, but this may be due to the smaller sample size of participants who completed evaluations at follow-up (n = 19) compared to those who completed evaluations pre-program and immediately post-program (n = 24). For example, no significant improvement in the scores of the Ability to Participate in Social Roles and Activities (38) measure was observed at 1-month follow-up compared to pre-program scores, but the effect size of the expressive writing program on this measure was medium (r = .33). In addition, our quantitative data analysis could not account for the negative events several participants experienced during the study, including two women who went through divorces, one woman who became unemployed, and one man who was hospitalized for treatment of decubitus ulcer. All these events may have diminished the beneficial impact of the program on these participants’ psychosocial health. Further study should evaluate the benefits of the expressive writing program on objective measures related to psychosocial health, such as usage of and costs for mental health care.
The program’s writing process helped participants confront and rationalize their past, make meaning of their losses, accept injury-related limitations in their life, and seek a new normal for themselves (29). Specifically, the 10-week program helped participants progress toward grief resolution and improve their psychosocial health and reduced their trouble falling asleep. Participants maintained these positive effects at 1-month follow-up. These delayed benefits (reduced distress related to different difficulties and increased feelings of meaning and purpose in life) demonstrate that the expressive writing program continued to help participants cope with their disabilities over time.
Our post-hoc analysis indicated that the coach-guided expressive writing program was more beneficial to people with SCI who had sustained a recent injury. Of the six participants who had sustained an injury within 5 years of study enrollment, five were in small groups of two or three other participants rather than in one-on-one sessions with the writing coach. It is not possible, however, to isolate the effects on participants of the group setting for expressive writing from the timing of their injury. Although individuals with SCI may benefits more from participating in the coach-guided expressive writing program within 5 years of their injury, some people may not be ready for this step.
Support in a small group setting with members who have similar experiences of loss or in one-on-one sessions with the writing coach gave participants a safe space to share their stories, express their feelings and emotions, and grieve their SCI-related losses (47); this experience helped participants find meaning and purpose in their lives and receive mutual social-emotional support from other group members (47, 48). Based on the post-hoc analysis, however, the effect of expressive writing in a group on the outcome measures may not be strong. The current expressive writing program involved writing coaches, yet studies using Pennebaker’s protocol involved solo expressive writing sessions with no interaction with others, including a writing coach (29–31). Future studies should include comparison arms of individual or group writing sessions without guidance from a writing coach. This design will provide a more complete understanding of the reductions in severity and symptoms of grief, and especially the delayed effect on grief, seen in the current expressive writing program.
Limitations of the present study should be considered when interpreting its findings. The study was exploratory in nature, had a small sample size, and used a one-group pretest – posttest design with a 1-month follow-up. Its findings should be confirmed by a randomized control trial design with a larger sample size and longer follow-up. In addition, due to the pilot nature of this study, inter-rater consistency in the delivery of the group and individual sessions between the two professional teaching artists was not evaluated. Finally, the majority of the participants were highly educated non-Hispanic White women, which limits the generalizability of the study findings.
The promising findings of the present study, despite its limitations, add to the limited evidence supporting the feasibility of coach-guided videoconferencing expressive writing programs for adults with SCI. Notably, the study’s 1-month follow-up evaluation provided valuable outcome data on the maintenance and delayed effects of the expressive writing program. This exploratory study highlights the need for further studies that evaluate the efficacy of coach-guided videoconferencing expressive writing programs for people with SCI.
Acknowledgements
We thank all the study participants for their precious time participating in the present study.
Funding Statement
This work was supported by Christopher and Dana Reeve Foundation: [Grant Number 2022631].
Conflict of interest
No potential conflict of interest was reported by the author(s).
Funding statement This research was supported by the Christopher & Dana Reeve Foundation [Grant number: 2022631].
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