Experiences of people seeking pain treatment

In the last 15 years, a wealth of qualitative research has been published on what people with chronic pain experience during their healthcare interactions/treatment.

This blog isn’t the right forum for me to undertake a rigorous systematic review of the literature (which takes months when done well). However, if you are interested in learning to communicate more effectively with patients who present with persistent pain, it’s important to have some exposure to what such people are saying when they are asked about their experiences.

MacNeela et al. (2015) undertook a massive meta-ethnography—a synthesis of qualitative research to find cross-cutting themes--of 38 separate qualitative articles published between 1994 and 2011 on the subjective experience of people with chronic low back pain. Their findings are worth a look:

• Worry and fear about the future, and their inability to participate in normal life, was a major theme expressed by interviewees.
  
• People were left feeling disappointed by healthcare encounters, with patients identifying clinician communication as a major area needing improvement.
  
• Listening and having an empowering attitude were two clinician qualities to which patients responded positively.
  

More recently, in an interview study with 16 adults with medically unexplained pain, Okuhara et al. (2026) described themes related to the following:

• Patients felt their pain narratives were rejected by clinicians, that their own voices were being denied, and then, in a protective action, they withdrew from healthcare altogether.
  
• Patients blamed themselves for the pain after clinicians repeatedly disbelieved them.
  
• Clinicians’ validation of the pain led to a lessening of distress and finding better ways to cope.

Eighteen adult patients in an inpatient multidisciplinary treatment setting revealed the following in their interviews (Lewis et al. 2025):

• Clinicians believing and validating the patients’ symptoms was a crucial first step in their treatment.
  
• Lack of trust significantly hindered patients’ engagement in treatment.
  
• The interpersonal style of the clinicians matters as much as the treatment offered. A poor relationship with the provider hindered treatment success.

Joyce et al. (2023) interviewed 12 adults from predominantly low-income and minority populations who were enrolled in a randomized trial for chronic low back pain. Their interviews revealed:

• The interconnectedness of the patient and treatment provider was of utmost importance.
  
• Being empowered through education and supportive providers made a big difference in patients’ mood and outlook.

Interviews with 15 people who have experienced uncertainty when navigating treatment for low back pain (Costa et al., 2023) showed the following:

• Many uncertainties were due to difficulties in patients’ interactions with clinicians. Both the ability and the willingness of clinicians to help were questioned by patients.
  
• When clinicians listened to and acknowledged their concerns, patients felt heard and trusted their clinicians more.
  
• How clinicians ask questions of patients matters just as much as what they ask.

This last point relates directly to Gonzalez et al.’s (2022) study of 29 adults with upper extremity or back pain, which showed that “People have mixed reactions to both physiological and psychological explanations of disproportionate pain. As such, without direction on content, communication might be most effective by focusing on relational aspects, such as emotional connection and trust. … [Results] highlight the need for tailored relational communication strategies that prioritize feeling heard, validated, and accompanied.” (p. 1388)

It’s clear that patients want person-centered communication focused on empathy, listening, and validation of their personal experience.

Those small snapshots of the literature only show what’s happening in the adult literature. There is a whole other (large) collection of qualitative interview studies of children and adolescents who have persistent pain—and their parents. If you are a clinician who treats pediatric patients of any age, then you’ll want to check out the resources highlighted at the bottom of this page specific to children. But believe me—they say virtually the same things as the literature cited above.

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What have your experiences been when communicating with patients with chronic pain conditions?

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Qualitative research on adults with chronic pain conditions (cited above):

Costa, N., Butler, P., Dillon, M., Mescouto, K., Olson, R., Forbes, R., & Setchell, J. (2023). “I felt uncertain about my whole future”—A qualitative investigation of people’s experiences of navigating uncertainty when seeking care for their low back pain. Pain, 164(12), 2749–2758. https://doi.org/10.1097/j.pain.0000000000002975

Gonzalez, A. I., Ramtin, S., Ring, D., Donthula, D., & Queralt, M. (2022). People Have Mixed Reactions to Both Physiological and Psychological Explanations of Disproportionate Pain. Clinical Orthopaedics and Related Research, 480, 1387_1398. (35258498). https://doi.org/10.1097/CORR.0000000000002163

Joyce, C., Keysor, J., Stevans, J., Ready, K., Roseen, E. J., & Saper, R. B. (2023). Beyond the pain: A qualitative study exploring the physical therapy experience in patients with chronic low back pain. Physiotherapy Theory and Practice, 39(4), 803–813. https://doi.org/10.1080/09593985.2022.2029650

Lewis, H., Jinadu, H., Kelley, R., Medford, N., Trigwell, P., & Guthrie, E. (2025). Trust, belief and transitions: People’s experiences of multidisciplinary inpatient treatment for persistent physical symptoms. A qualitative study. Disability and Rehabilitation, 47(13), 3342–3352. https://doi.org/10.1080/09638288.2024.2420833

MacNeela, P., Doyle, C., O’Gorman, D., Ruane, N., & McGuire, B. E. (2015). Experiences of chronic low back pain: A meta-ethnography of qualitative research. Health Psychology Review, 9(1), 63–82. https://doi.org/10.1080/17437199.2013.840951

Mahon, P. R., & Reynolds, D. (2024). Lived Experiences of Adolescents Living With Primary Chronic Pain. Pain Management Nursing, 25(1), 19–26. https://doi.org/10.1016/j.pmn.2023.06.006

Okuhara, T., Okada, H., Yokota, R., & Kagawa, Y. (2026). Listening to the silence of pain narratives: A qualitative study of epistemic injustice in patient–clinician communication on medically unexplained chronic pain in Japan. Patient Education and Counseling, 142, 109402. https://doi.org/10.1016/j.pec.2025.109402

Qualitative research on children, adolescents, and their parents:

France, E., Uny, I., Turley, R., Thomson, K., Noyes, J., Jordan, A., Forbat, L., Caes, L., & Silveira Bianchim, M. (2023). A meta-ethnography of how children and young people with chronic non-cancer pain and their families experience and understand their condition, pain services, and treatments. Cochrane Database of Systematic Reviews, 2023(10). https://doi.org/10.1002/14651858.CD014873.pub2

Hauber, S. D. (2025). Treatment for adolescent nonspecific persistent back pain: A multi-method, multi-source study to elucidate gaps and trends in knowledge, research, and clinical practice [PhD Thesis, University of Limerick]. Chapters 1, 4, 5, and 6 are especially relevant. https://researchrepository.ul.ie/entities/publication/388c2047-3db7-4322-9cf2-bf67d9b0b915

Joslin, R., Allen, E., & Carter, B. (2024). Understanding the importance of therapeutic alliance during physiotherapy treatment for musculoskeletal pain in children: A scoping review. Frontiers in Pain Research, 5, 1452771. https://doi.org/10.3389/fpain.2024.1452771

Joslin, R., & Roberts, L. (2024). Adolescent and Parent Experiences and Perceived Effectiveness of Physical Interventions for Chronic Musculoskeletal Pain: A Qualitative Study. Musculoskeletal Care, 22(4), e70006. https://doi.org/10.1002/msc.70006