Could ‘remote’ mindfulness help caregivers of individuals with spinal cord injuries?
3rd March 2022
by Ellie Sullivan, Assistant Psychologist
Neurological conditions, including spinal cord injury (SCI) sufferers, confer a high level of care need, including chronic pain, affecting 60% of individuals with SCI (Modirian, 2010). Caregiver burden and distress is extremely common, associated with a deterioration in quality of life (QoL). Thus, it is paramount that caregivers’ psychological well-being is considered and practical solutions offered. Not only will this help address the needs of the caregiver but is also likely to carry over to the recipient of care.
The issue of SCI caregiver burden has previously been explored; cognitive behavioural interventions have shown varied results. On the one hand a study found no significant improvement in QoL after a six-month stress reduction intervention(Schulz et al, 2009), whilst a four-week psychoeducational programme did provide significant improvements (Molazem et al, 2014). However, the main barrier found with these interventions was the need to attend ‘in person’ courses, which was impractical in terms of time; shorter, internet delivered content may therefore prove more accessible to these groups.
Increasing interest has been sparked by mindfulness-based interventions (MBIs) for psychological well-being. Mindfulness is the skill that develops present-moment awareness, which promotes acceptance, rather than ‘challenging’ thoughts and modifying behaviours (Kabat-Zinn, 1990). Whilst MBIs have provided promising results in relation to pain and depression for individuals post SCI there have been few efforts to improve these factors and QoL for caregivers. This motivated recent research by Hearn et al (2018), to explore the efficacy and feasibility of internet based MBIs for SCI caregivers, in the hope that it may provide practical, convenient psychological support and enhance their QoL.
Details of Intervention
As part of their research Hearn et al (2018) employed fifty-five participants; these were all above eighteen years old and were the spouses/family caregivers of an individual with a SCI with no prior experience of meditation. Just over half of the sample were male, married and worked full time, 29% were cohabiting and 32.7% worked part-time. Most of the sample were white British, Irish, or European (85.5%). They were randomly allocated into two intervention groups, both of which lasted eight weeks; twenty-eight participants took part in the mindfulness intervention and twenty-seven in a psychoeducational control group. The former involved ten-minute mindfulness practices, twice per day, six days per week, totalling 960 minutes. These practices included topics such as breath awareness, and integration of mindfulness into daily life. The other involved a weekly email with psychoeducational materials on SCI and pain. The materials included content detailing epidemiology of SCI and SCI-specific pain, current understanding of pain using the biopsychosocial model and the role of stress and mood in pain perception after SCI. Moreover, sources of support and options for pain and psychological management were given. The study involved measuring participants levels of anxiety and depression, quality of life as well as mindfulness scores at baseline, post-intervention and at a three month follow up.
Outcomes
The study found significant group differences between the groups; the mindfulness intervention group had significantly lower rates for severity of depression, anxiety, and significant improvements in physical, psychological, and social QoL, compared to the control group. Furthermore, the mindfulness training group had significantly higher scores for various mindful related attributes including observing, acting with awareness, non-judging, non-reactivity to inner experience, as well as a significantly greater mindfulness rating over all compared to the control group. Moreover, several significant group differences were sustained at the three month follow up. Including, severity of depression, and anxiety as well as social QoL. Similarly, observing, acting with awareness, non-reactivity, non-judging, and total mindfulness scores illustrated significant group differences that persisted after three months.
Conclusions
Hearn et al’s (2018) study is the first study to have specifically explored internet delivered mindfulness interventions to the carers of individuals with SCI. Various measures had significantly improved post the mindfulness intervention with some of those improvements shown to persist at a three month follow up. In fact, further reductions in severity of depression and anxiety as well as greater social ‘QoL’ scores were observed three months after starting the mindfulness intervention. These results demonstrate the potential utility of internet delivered mindfulness training for promoting caregivers’ wellbeing.
Caregiver burden may result in depression and anxiety for these groups, however making the time for a short yet consistent mindfulness practice may help reduce and alleviate the severity of depression and anxiety for them, as indicated by significantly lower depression and anxiety scores and increased mindfulness. These benefits have been reflected in previous studies focusing on mindfulness for people with SCI specifically (Skinner et al, 2010). This implies that a mindfulness practice may be feasibly integrated into a daily schedule for both a person with a SCI and their carer; this could provide a meaningful, shared activity of therapeutic benefit, in the hope that their collective wellbeing and mindfulness improves. In addition, no compromise in efficacy has been found between internet derived mindfulness tools and face-to-face interventions (Cusens et al, 2010). This makes it accessible and convenient for people with SCI and their care providers, which may help dissolve any potential barriers for them accessing and committing to a mindfulness practice, particularly relevant if unable to access to community services.
However, it is worth recognising that the caregivers average age in Hearn et al’s (2018) study was 44 years old, whereas the average age of caregivers is 53 years old, highlighting a need for further research to explore mindfulness benefits for an older population of caregivers exclusively. Additionally, the sample only included caregivers of individuals with chronic neuropathic pain secondary to SCI, who may have specific needs compared to other SCI groups. Lastly, Hearn et al (2028) had no way of monitoring whether the control group had engaged with the content of their resources; it was a passive intervention that concentrated on the individual with SCI and not the needs of the caregiver. With these factors in mind, it is important to realise that there may not be one, readily implemented and continuously effective mindfulness intervention; a ‘one size fits all’ approach may thus be ineffective. Yet, this study offered a preliminary insight into the possible benefits of internet-based mindfulness tools for caregivers of individuals with SCI as an adjunct to more comprehensive carer support initiatives.
References
Cusens, B., Duggan, G. B., Thorne, K., & Burch, V. (2010). Evaluation of the Breathworks Mindfulness-Based Pain Management Programme: Effects on Well-Being and Multiple Measures of Mindfulness. Clinical Psychology and Psychotherapy, 17, 63-78.
Hearn, J., Cotter, I., & Finlay, K. (2018). Efficacy of Internet-Delivered Mindfulness for Improving Depression in Caregivers of People with Spinal Cord Injuries and Chronic Neuropathic Pain: A Randomized Controlled Feasibility Trial. Archives of Physical Medicine and Rehabilitation, 100(1), 17-25. file:///Users/elliesullivan/Downloads/Efficacy_of_Internet_Delivered_Mindfulne.pdf
Modirian, E., Pirouzi, P., Soroush, M., Kabalaei-Esmaeili, S., Shojaei, H., Zamani, H. (2010). Chronic pain after spinal cord injury: results of a long-term study. Pain Med, 11(7), 1037-43.
Molazem, Z., Falahati, T., Jahanbin, I., Jafari, P., & Ghadakpour, S. (2014). The Effect of Psycho-Educational Interventions on the Quality of Life of the Family Caregivers of the Patients with Spinal Cord Injury. A Randomized Controlled Trial.International Journal of Community Based Nursing and Midwifery, 2(1), 31-39.
Kabat-Zinn, J. (1990). Full catastrophe living: Using the wisdom of your body and mind to face stress, pain, and illness. New York, NY: Dell.
Schulz, R., Czaja, S. J., Lustig, A., Zdaniuk, B., Martire, L. M., Perdomo, D. (2009). Improving the quality of life of caregivers of persons with spinal cord injury: A randomized controlled trial. Rehabilitation Psychology, 54(1), 1-15.
Skinner, T. C., Roberton, T., Allision, G. T., Dunlop, S., & Bucks, R. S. (2010). Experiential Avoidance, Mindfulness and Depression in Spinal Cord Injuries: A Preliminary Study. Australian Journal of Rehabilitation Counselling, The, 16(1), 27-35.