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Supported Self-Management—From a Lived Experience Perspective

Published

9 July 2021

Successful supported self-management requires actions from both health care providers and the person living with pain.

Self-management can have different interpretations or understandings of different actors in the health care system. To people living with pain, it may refer to behaviours, strategies, and activities to improve their quality of life including non-medical ways of managing pain whereas to a health care provider it may be a referral to a clinician or pain specialist for their patient. Self-management can be viewed by people living with pain as solitary and not collaborative.

Supported self-management is understood to involve effective relationships between the person living with pain and their health care provider(s), working collaboratively on well-established self-management techniques [1]. It requires a shift by health care providers in not seeing a person with pain as someone with symptoms that requires treatment but rather as a whole person with skills, strengths, and attributes [2].

Self-management has been shown to be an effective approach for chronic low back pain management [3]. Successful supported self-management requires actions from both health care providers and the person living with pain.

Establishing a Foundation of Support

  • Listening: persistent pain is complex and involves much more than a person’s biology or symptoms. People need time to be able to openly and safely, without interruption, relate their experiences to their health care provider. Writing, art, or other methods can increase understanding of the pain experience to others.
  • Validation: health care providers must validate that a person’s pain is real. People living with persistent pain are often stigmatized or not believed. When pain is validated and believed, the person with pain may be more able to move forward and integrate self-management as part of their overall care plan [4].
  • Language: the language used by healthcare providers can have detrimental or positive effects on people living with pain. Negative language can cause fear of movement and hold people from being able to meaningfully engage in self-management while positive language can be empowering and create a sense of agency and competency in managing one’s pain.
  • Trust: effective pain self-management requires a respectful and equal relationship between health care providers and people living with pain. The foundation of this relationship is trust.
  • Shared Decision Making/Co-Creation: this is a process where people living with pain and their health care providers share information, express opinions, and develop a consensus on treatment/management decisions. This helps ensure that people living with persistent pain are informed and choose a course of care consistent with their values and preferences as well as the best available scientific evidence [5].

Self-Management Strategies, Supported by Healthcare Team

  • Acceptance and Willingness: once a person’s pain has been validated, people living with pain are better able to understand that while pain may be part of their lives for many years, there are proven and effective things they can do to help themselves live better with their pain, if they are willing to try [6].
  • Patience: learning how to live better with persistent pain is challenging and often very frustrating. People that live with persistent pain need to be patient with themselves and be self-compassionate. It can take weeks, or longer, for the positive results of support self-management to start to become evident.
  • Pacing: people living with pain may benefit from learning strategies to pace themselves during their daily or planned activities. This can help ensure they do not become overwhelmed or cause a flare up of their pain.
  • Movement (Physical Activity): while this may feel counterintuitive when in pain, movement can help reduce one’s pain. It is important to find movement that one enjoys, as that will help ensure people continue with it; it can be exercise, cycling, walking, running, going to the gym, gardening, dancing, or any other activity that gets you moving regularly. In addition to pain modulation and the physical effects, movement can also provide positive psychological effects [7].
  • Calming Strategies: pain is a sympathetic nervous system response [8] and relaxation techniques can help regulate one’s parasympathetic nervous system. Effective relaxation techniques include deep, controlled breathing, mindfulness, and meditation.
  • Meaningful Activities: focusing on meaningful activities include activities such as reading, enjoying one’s hobby, volunteering or any activity that has meaning and purpose to the person living with pain. Health care providers can help people discover what these activities are and work with them in developing plans on how to engage in these activities.
  • Social Connection: socializing with friends or family [9].

People that live with persistent pain are strong and resilient and capable of engaging in supported self-management. Resilience is defined, in part, by the American Psychology Association as “the process and outcome of successfully adapting to difficult or challenging life experiences, especially through mental, emotional, and behavioral flexibility and adjustment to external and internal demands” [10]. Resilience is ordinary, meaning it is in all of us. Resilience is variable among individuals, it can be strengthened and increased because of one’s experiences.

REFERENCES

[1] Hutting N, Johnston V, Staal JB, Heerkens YF. Promoting the Use of Self-management Strategies for People With Persistent Musculoskeletal Disorders: The Role of Physical Therapists. J Orthop Sports Phys Ther. 2019 Apr;49(4):212-215.

[2] National Health Service. (March 10, 2020). Supported self-management: Summary guide. Retrieved January 4, 2020 from https://www.england.nhs.uk/wp-content/uploads/2020/03/supported-self-management-summary-guide.pdf

[3] Du S, Hu L, Dong J, et al. Self-management program for chronic low back pain: a systematic review and meta-analysis. Patient Educ Couns. 2017; 100: 37– 49.

[4] Edmond SN, Keefe FJ. Validating pain communication: current state of the science. (2015). Pain. Feb;156(2):215-219. doi: 10.1097/01.j.pain.0000460301.18207

[5] Jones, L, Roberts, L, Little, P, Mullee, M, Cleland, J, Cooper, C. (2014). Shared decision making in back pain consultations: an illusion or reality? European Spine Journal. 23. 13-19.

[6] Bronwyn Lennox Thompson, Jeffrey Gage & Ray Kirk (2020) Living well with chronic pain: a classical grounded theory, Disability and Rehabilitation, 42:8, 1141-1152

[7] Lewis J, O’Sullivan P. Is it time to reframe how we care for people with non-traumatic musculoskeletal pain? Br J Sports Med. 2018; 52: 1543– 1544.

[8] Schlereth T, Birklein F. The sympathetic nervous system and pain. Neuromolecular Med. 2008;10(3):141-7. doi: 10.1007/s12017-007-8018-6. Epub 2007 Nov 8. PMID: 17990126.

[9] Dueñas, M., Ojeda, B., Salazar, A., Mico, J. A., & Failde, I. (2016). A review of chronic pain impact on patients, their social environment and the health care system. Journal of pain research, 9, 457–467.

[10] American Psychological Association. (n.d.). APA Dictionary of Psychology. https://dictionary.apa.org/resilience

AUTHOR

Keith Meldrum, AScT, RTMgr
International Persistent Pain Advocate, A Path Forward, Canada
Global Alliance of Partners for Pain Advocacy (GAPPA) Task Force
apathfwd@gmail.com 

REVIEWERS

Joletta Belton, MSc
Global Alliance of Partners for Pain Advocacy (GAPPA) Task Force
The Endless Possibilities Initiative and Retrain Pain Foundation, USA

Pamela Ressler
Stress Resources, USA
Global Alliance of Partners for Pain Advocacy (GAPPA) Task Force

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