4. Discussion
anxiety, cognitive or sensory limitations, physical disabilities, traumatic SCI, disability
DISEASE
This study represents the first known examination of impacts of the pandemic on the lives of women with SCI residing in community settings within the United States. Using an online, qualitative approach, we asked a sample of women with traumatic SCI to respond to one open-ended question, “Please tell us how COVID-19 has affected you and your life”. Using Hand-coded Sentiment Analysis to identify the sentiment (positive, negative, mixed, or neutral) attributed to respondents’ statements, the majority of participants described negative impacts from the COVID-19 pandemic.Openly sharing their stories and concerns, our respondents clearly perceived a wide range of impacts as demonstrated by their statements that resulted in eight major themes indicating areas of importance. Most respondents reported impacts on mental and social health, with the vast majority of them reporting negative impacts on mental as well as social health. They described increased feelings of loneliness, anxiety, and frustration, as well as reduced social interactions, a finding consistent with other research on the negative effect of the pandemic on the psychosocial health of people with SCI [Many respondents identified impacts on Activities Outside of the Home. Most noted negative disruptions, which is not surprising given the implementation of social distancing and other disease mitigation measures during our data collection period. For example, several respondents cited missing physical exercise or physical therapy due to the temporary closing of facilities and the suspension of in-person services. Respondents also lamented the loss of ability to engage in activities outside the home, such as not being able to eat in restaurants, leave their homes, or travel. A minority, however, tended to focus on the positive impact of the pandemic and mentioned enjoying outside activities such as gardening or enjoying nature. Interestingly, nearly a third of the respondents who mentioned participation outside the home in their open-ended response indicated a neutral sentiment. This is likely because people with SCI often experience severely restricted activities outside of the home in pre-pandemic times due to functional limitations, inaccessible environments and transportation, lack of personal assistance and adaptive equipment, and other barriers to community participation.A smaller number of respondents mentioned physical health and employment in their responses, but again, more identified negative impacts than positive. In fact, negative impacts on work were reported more than twice as often as positive impacts, and negative impacts on physical health were noted nearly three times as often as positive impacts.While overall impacts were far more negative than positive, similar to results reported in a study on the effects of the pandemic on a predominantly male sample of people with SCI [Although many reported serious negative impacts, at the time of this study, respondents appeared to have been spared other significant, if not life threatening, difficulties experienced by other people with disabilities. For example, while others reported food insecurities during the pandemic [Nevertheless, our study has multiple strengths. For example, the focus is novel in that it offers a rare examination of the pandemic’s impacts on women with SCI, a population that is poorly represented in the SCI literature and seemingly missing entirely from general COVID-19 literature. Additionally, our study digresses from most of the existing research on the pandemic in the context of SCI that prioritizes disease management and prognosis, as noted by Morgan and colleagues [Our study has several limitations. First, while some respondents provided lengthy responses, others were fairly brief and may have only mentioned the most salient impacts. Our methodology did not allow us to probe respondents’ statements to gain a more in-depth understanding of the impacts of the pandemic. Although our sample size is generous for including women with SCI, the small sample size may have limited our ability to detect significant differences between our study demographics and identified themes. Additionally, since we aimed to gather rich data on the perceptions of the impacts of the pandemic on women with SCI, the results are meaningful but not generalizable to other women or to people of other genders with SCI. Moreover, although our sample was diverse in terms of age, disability characteristics, and geographic representation, it was not fully representative in terms of level of education, race, and resources. Given the dynamic changes occurring over time (development of vaccines, reopening of schools and businesses, impact on healthcare providers and services), our study would be difficult to replicate. Furthermore, our predominantly non-Hispanic, White, relatively well-educated sample of women who were required to have access to a computer with high-speed internet for participation in the parent study is not representative of the population of women with SCI in the United States, who, as women with physical disabilities, are more likely to live below the poverty level, more likely to have only a high school education or less, and less likely to be employed compared to the general population of women [There is a critical need for future research designed to systematically explore experiences in later stages of the pandemic and its prolonged burdens on the lives of women in this population. We call upon researchers to partner with people in the SCI community to examine and delve more deeply into the issues identified by our respondents and expand this work by involving a more diverse sample of women with SCI via the inclusion of more women who are members of racial and ethnic minorities and other marginalized communities. Additionally, research is needed that is inclusive of women with SCI who experience severe cognitive or sensory limitations or who live in nursing homes and other institutions precluding their eligibility for the current study.