Individuals Experiences following Spinal Cord Stimulation
Research type
Research Study
Full title
An Exploration of Individuals Experiences following Spinal Cord Stimulation
IRAS ID
339606
Contact name
Beth Nicholson
Contact email
Sponsor organisation
University of Hull
Duration of Study in the UK
1 years, 1 months, 26 days
Research summary
Chronic pain is defined as an uncomfortable sensory and emotional experience that continues past the expected period of healing. It can have huge impacts on individuals across many aspects of life including mental health, quality of life, sleep and work. Spinal cord stimulation (SCS) is a treatment for certain pain conditions. SCS involves a device being implanted in the spinal column which emits low frequency electrical impulses to reduce the experience of pain. The current study will focus on understanding individuals’ experiences following SCS implantation. The rationale for this study is that by 12 to 24 months following SCS implantation up to 50% of individuals experience a loss of pain relief. Most current SCS literature focuses on either technological efficacy or psychological factors in understanding the suitability for SCS prior to implantation. It is known that psychological experiences can impact the experience of pain, therefore it is important to consider lived experience at all points in an individual’s SCS journey. This will allow us to think about what support could be beneficial in reducing the self-reported decline in pain relief. The implementation of this support could lead to individuals being able to independently cope with their pain and thus needing less intensive support from services. This will be a qualitative study using interpretative phenomenological analysis (IPA) to explore individual experiences and inform SCS support. Participants will be individuals who have undergone SCS implantation within 12 to 24 months. They will be recruited from York, Hull and South Tees NHS pain services as well as through Facebook support groups for SCS. The aim of this study is to understand individual’s experiences following SCS to help us consider what could be contributing to the self-reported decline in pain relief at 12 to 24 months’ post implantation. By gathering individuals meaning from these experiences, we will be able to understand further what support and interventions could be beneficial in promoting quality of life and pain management following SCS implantation. Therefore, the research question is “What are individual’s experiences following SCS?” with the sub question “What experiences, if any, could help support overall wellbeing?”.
Lay summary of study results: Key findings Four main themes were identified:
1. Experiences within support systems
Participants discussed their experiences with medical professionals, family and friends and other people with SCS. Experiences with medical professionals were particularly important. Supportive and consistent care was linked to more positive overall experiences. Support from friends and family also played a key role in the SCS experience with some participants expressing that SCS highlighted who was really there for them. Many participants also expressed a desire for greater contact with other SCS experiences. They felt that speaking to others with similar experiences would be reassuring and informative.
2. Expectations vs reality
This theme explored how expectations before SCS implantation influenced individuals’ experiences after implantation. Higher expectations were sometimes linked to higher levels of disappointment with SCS outcomes, while more negative or uncertain expectations were associated with greater satisfactions when outcomes were better than expected.
3. Adjusting to life with SCS
Participants discussed a range of challenges related to living with SCS. This included the physical sensations caused by stimulation which often felt strange and unfamiliar, as well as the demands charging and managing the device. While some participants were able to integrate these tasks into their daily routine, others found it felt unnatural or disruptive. This theme also explored the ways participants adapted to life with SCS. These were often personal coping strategies that involved acceptance, self-compassion and a commitment to continuing activities they enjoy despite the challenges associated with SCS.
4. SCS and surgery complications
Most participants experienced at least one complication related to SCS or their surgery. These complications often had a significant emotional impact and sometimes affected participants overall perceptions of SCS. While potential solutions were often available, the emotional impact of these complications sometimes made it difficult for participants to consider their next steps.What does this mean?
The findings highlight experiences that may contribute to more negative perceptions of SCS such as poor support from medical professionals, high expectations before implantation, difficulties adjusting to SCS sensation and charging and complications following surgery. The study also identified factors that supported more positive experiences and wellbeing including regular and consistent follow-up care, peer support and psychological processes such as acceptance, self-compassion and commitment to valued activities. Overall, these findings suggest important clinical implications including the importance of multidisciplinary follow-up care, the potential use of approaches such as acceptance and commitment therapy (ACT) and the potential benefits of peer support groups following SCS implantation.REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
24/PR/0970
Date of REC Opinion
29 Aug 2024
REC opinion
Further Information Favourable Opinion