Are women with spinal cord injury at a disadvantage?

The 8^th of March is International Women's Day. On this day, the rights, equality, and self-determination of all women and girls are in the spotlight across the world.

The Paraplegia Community decided to mark the occasion this year by taking a look at the situation of women with spinal cord injury. Their experiences often differ from those of men and present specific challenges. In this blog article, we highlight some of these differences by presenting findings from studies carried out at Swiss Paraplegic Research.

Women are underrepresented in clinical studies

In clinical research on cardiometabolic, urological, and sexual aspects of spinal cord injury, women are often underrepresented. Many studies focus primarily on men, arguing that there are much fewer women with spinal cord injuries. In some cases, women are even intentionally excluded from studies so that all participants can be better compared with each other.

These practices lead to research gaps with drastic consequences: Without data on women with spinal cord injury, their specific needs can neither be identified nor optimally catered for by medical care.

A rather rare image, as research on people with spinal cord injury is overwhelmingly conducted with men. However, the results are not necessarily applicable to women.

Women are less likely to seek specialized care

Women are less frequently treated in centers specialized in spinal cord injury than men. This is the case both for the initial rehabilitation following a traumatic spinal cord injury and also for hospital stays for the treatment of complications arising later on.

Differences can also be seen in specialist care: 44% of women come in for an annual check-up, compared with 53% of men.

It has been shown that specialized treatment by an interdisciplinary team can lead to better health outcomes. So why do women with spinal cord injuries use these services less often?

One explanation could be that women prefer to see other specialists such as gynecologists. However, individual specialists cannot be expected to offer the full range of competencies covered by an interdisciplinary team.

It is also possible that women avoid treatments and check-ups in specialized centers due to longer travel times, instead preferring alternatives that are closer to home and therefore more compatible with family commitments.

Women are less likely to use specialized care for spinal cord injuries. This can be a disadvantage for their health.

Increased risk of depression symptoms after rehabilitation

There are also gender differences in mental health. According to the Federal Statistical Office, women in the general population are 1.5 times more likely to suffer from moderate to severe depression than men. However, this difference is much greater among people with spinal cord injuries: during the first two years after an initial rehabilitation, women with spinal cord injuries are four to seven times more likely than men to develop symptoms of depression.

Men seem to be in a more stable mental state at the end of their first rehabilitation than women. These findings suggest that it is crucial to provide intensive support to women with spinal cord injuries even after rehabilitation and to develop targeted services to enhance their mental well-being.

Unmet needs in peer support and sports

Women with spinal cord injury report experiencing unmet service needs in 30% more service areas than men. The gender gap is particularly wide in the domain of peer support: women state 3.4 times more often than men that they lack interaction with people with similar experiences.

Women are also 2.6 times more likely than men to report that they lack opportunities to take part in sports. After a spinal cord injury, the percentage of women who engage in sports at least once a week decreases more sharply than that of men.

Services need to be adapted to the needs of women to promote social participation and general well-being, since it has been shown that a high level of unmet service needs is associated with lower life satisfaction.

Following a spinal cord injury, many people find that wheelchair sports are important in helping them to regain confidence in their own body. Sports also foster social interactions, increase life satisfaction, and offer many health benefits.

Women with spinal cord injury place a greater emphasis on prevention

Despite these challenges, women with spinal cord injury are more health conscious than men. The SwiSCI 2022 population survey indicates that women place more emphasis on the prevention of secondary health conditions than men. In addition, more women than men stated that they follow the recommendations of medical professionals and proactively seek solutions for their spinal cord-related health issues.

They are 1.7 times more likely than men to use digital technologies to monitor their health. The benefits are clear: new technologies support self-management by facilitating monitoring, tracking, diagnosis, and access to healthcare. This proactive behavior can have a positive impact on the health and quality of life of women with spinal cord injury.

Digital technologies include smartphones, computers, and wearable tracking devices such as smartwatches. Women use them more frequently than men to promote their health.

In summary, the situation for women with spinal cord injuries is still unsatisfactory: they are less likely to receive care from medical professionals specialized in spinal cord injury. The support services currently available, such as sports and peer support, are not yet adequately meeting their needs. After initial rehabilitation, they are at a higher risk of depression. At the same time, research still pays too little attention to the specific needs of women. It is time to change this.

“With our research, don't just want to provide data but also to bring about concrete changes – for more equal opportunities and better care well beyond the initial rehabilitation phase.”

Dr. Janina Lüscher, head of the SPR research group for the psychosocial health of individuals with spinal cord injury

“Our goal is to sustainably enhance the mental health of women with spinal cord injury by making their specific needs visible and offering targeted support.”

Dr. Marija Glisic, co-leader of the SPR research group for the respiratory and cardiovascular system of individuals with spinal cord injury

What experiences with medical care and support have you had as a woman with a spinal cord injury?