Grieving a disrupted biography: an interpretative phenomenological analysis exploring barriers to the use of mindfulness after neurological injury or impairment

Abstract

Background Mindfulness has demonstrated strong utility for enhancing self-management and health outcomes in chronic illness. However, sensation-focused mindfulness techniques may not be appropriate for clinical populations with neurological injury. This study aimed to identify how expert mindfulness teachers with sensory loss/impairment naturalistically adapt and experience mindfulness. We aimed to highlight the rationale for and barriers to mindfulness practice when living with sensory loss. Methods A qualitative, semi-structured interview design was used, analysed via Interpretative Phenomenological Analysis (IPA). Eight (5 females, 3 males) mindfulness teachers with neurological injury were recruited via a national registry of Mindfulness for Health teachers. Interviews (range: 50–93 min) were completed, transcribed verbatim and analysed idiographically for descriptive, linguistic and conceptual themes, before a cross-case analysis was completed. Results Two superordinate themes were identified: (1) Overcoming a disrupted biography; and (2) Proactive self-management. These themes considered the challenge of reconciling, through grief, a past health status with the present reality of living with sensory loss due to Spinal Cord Injury, Multiple Sclerosis or Functional Neurological Disorder. Mindfulness was experienced as a method by which proactive choices could be made to maintain control and autonomy in health, reducing perceptions of suffering, psychological distress, cognitive reactivity and rumination. Conclusions Mindfulness was found to support the self-management of health after neurological injury/impairment. Mindfulness meditation presented an initial challenge as trauma and grief processes were (re-)activated during mindfulness sessions. However, mindfulness was found to support the resolution of these grief processes and encourage adaptive approach-based coping and acceptance of health and neurological impairment/injury.

Adaptations to mindfulness-based interventions for neurological impairment: The SMALL PROMPTS approach.

“…Inductive thematic analysis led to the identification of nine themes which highlighted core adaptations recommended for improving the practice and teaching of mindfulness for people with sensory loss and neurological injury/impairment: (a) physical care of skin/bladder/bowel management; (b) mindful movement; (c) accessible training; (d) language leadership; (e) flexibility through permissive practice; (f) optimizing timelines; (g) management of posture; (h) inclusion of pacing; and (i) teaching from experience. One further theme pertaining to body scanning and further detail on language leadership have been presented separately in two publications (Finlay et al, 2021a) and therefore domains and recommendation statements pertaining to these themes were therefore included in Rounds 2 and 3.…”

“…A semistructured interview schedule was developed encompassing two domains: (a) experiential factors associated with personal use of mindfulness practice when living with SCI/MS/FND (previously reported in Finlay et al, 2021a); and (b) perspectives on teaching mindfulness when living with SCI/MS/FND, as reported here. Following in-depth literature scoping, the interview schedule was developed, informed by previous published research highlighting the barriers to people with SCI using mindfulness (Hearn et al, 2021).…”

“…Physically, concerns about the utility of MBIs for NI (and other disability groups) surround: (a) the difficulty of undertaking body scans when sensation is not present (Finlay et al, 2021b); (b) perceived expectations of supine meditation (Simpson et al, 2019); (c) “mindful walking” as a central tenet of standardized MBIs (Kabat-Zinn, 2013; Simpson et al, 2019), something which is not always achievable after NI; and (d) the lack of standardized adapted mindfulness practices for wheelchair users, and/or those with NI. Psychologically, evidence suggests that the formulation of MBIs for neurological disability needs careful consideration as it may risk: (a) (re-)activating grief processes associated with traumatic injury or chronic illness diagnosis (Finlay et al, 2021a); (b) heightening awareness of, and distress associated with, sensory loss, particularly in the short-term (Hearn et al, 2021); and (c) overtly rely upon sensation-focused language which may exacerbate perceptions of mindfulness being noninclusive and inaccessible for populations living with NI. These are all elements which may contribute to concern about the suitability and adaptability of MBIs for NI.…”

“…Consequently, there is an urgent need to develop formal recommendations by which mindfulness-based practices may be best adapted for use in populations with NI. The current study aimed to generate clinical recommendations to highlight priority adaptations to mindfulness teaching for populations with sensory loss (see also Finlay et al, 2021a; Hearn et al, 2021). To do so, experienced mindfulness practitioners/teachers with sensory impairment because of SCI, MS or FND, were interviewed to review the specific and skills-based adaptations they would recommend for enhancing the accessibility of MBIs for the target population.…”

Meditation: A Promising Approach for Alleviating Chronic Pain

“…This could minimize the agony that chronic pain commonly causes in people's minds. Furthermore, mindfulness can help individuals take more control over their pain, which can reduce anxiety [34].…”