Perspectives of primary care patients with chronic pain

Voices that may not otherwise be heard: a qualitative exploration into the perspectives of primary care patients living with chronic pain| JPR – June 2014

Background: The purpose of this study was to examine the utility of a combination of qualitative methods (Photovoice, one-on-one interviews, and focus groups) in examining the daily experiences of primary care patients living with chronic pain.

Methods: A sample of English-speaking primary care patients aged 30 years or older, who had been prescribed an opioid for long-term, noncancer pain management, participated in the study.

Each patient took photographs that best reflected both

  • his/her experiences with chronic pain and
  • what he/she would like his/her life to be without chronic pain.

Results:  

Patients submitted an average of 20.2±3.1 photographs (range =8–27 photographs).

Analysis of one-on-one interviews illuminated five dominant themes:

  1. daily need for multiple medications, including opioids;
  2. difficulties climbing a flight of stairs;
  3. struggling to get out of bed in the morning;
  4. extreme challenges with participating in day-to-day life activities; and
  5. experiencing feelings of hopelessness and helplessness on a regular basis.

I’m surprised that “struggling to get out of bed”  made this list of top-5 chronic pain complaints, but perhaps my own difficulties with this are more obvious than I realize.

My husband says that, for me, “roughing it means getting out of bed.”

Seven themes emerged from the focus groups:

  1. undesired effects/burdens of medications,
  2. loss of/striving for independence,
  3. effect on social interactions/relationships,
  4. pain effect on activities of daily living,
  5. constant search for convenience/a better situation,
  6. interactions with physicians, and
  7. frustration/depression with pain.

Conclusion:

The qualitative methods employed in this study provide deep insight into perceptions and experiences of patients living with chronic pain that is vital for informing future clinical interventions.

Below are excerpts from the full article:

Background

Individuals living with chronic pain often struggle to present themselves as credible when seeking medical care because pain is invisible,

Not surprisingly, it is not uncommon for patients with complaints of chronic pain to report poor-quality interactions with health care professionals.

An extensive collection of self-administered assessment tools has been developed to capture patients’ experiences and beliefs related to a broad spectrum of psychosocial outcomes resulting from living with chronic pain

in-depth interviews with patients with chronic pain revealed not only overwhelming feelings of shame and frustration but also daily experiences of powerlessness and ambivalence.

The Photovoice method combines photography and accompanying narratives to explore perspectives of individuals that may not otherwise be appreciated

this method holds great promise in understanding the complexities of those living with chronic health conditions as well.

Results

  • One-on-one baseline and follow-up interviews

Twenty-five patients (21 women and four men) submitted photographs and completed both one-on-one interviews.

Patients submitted an average of 10.3±5.4 legible, nonduplicate photographs (range =2–21 photographs).

The themes were

  1. activities of daily living,
  2. daily realities of living with chronic pain,
  3. desire for a “normal” life, and
  4. sources of comfort and/or hope.

A substantial majority of photographs depicted patients’ current experiences with chronic pain (n=226; 91.5%) compared with relatively few depicting either future desires or what they would like their lives to be without chronic pain (n=21; 8.5%).

That’s not surprising. When you have to use every bit of your energy and pain relief just to accomplish “normal” activities, there’s little left over to fantasize about being “cured” of our pain.

As we’ve been told countless times, our pain will be here as long as we are.

  • Focus group sessions

Collectively, seven themes emerged across focus group sessions: [itemized above] undesired effects/burdens of medications, loss of/striving for independence, effect on social interactions/relationships, pain effect on activities of daily living, constant search for convenience/a better situation, interactions with physicians, and frustration/depression with pain.

  • Undesired effects/burdens of medication

The discussion was mostly negative in nature and revolved around the notion that medication seemed to hurt more than help.

It’s true that after you’ve been using medication for a while, your still far-from-perfect relief seems insufficient and we forget what life feels like without it. I’ve experienced this with both opioids and antidepressants.

It’s tiresome to keep taking handfuls of pills when you still end up feeling lousy, so at some point, we say, “he** with it” and stop taking them.

But then we quickly run into the reasons for which we were taking the medication.  The issues being medicated, whether pain or depression or high blood pressure, come surging back and it quickly becomes clear that life with medication is far preferable to life without.

The following quotation exhibits ambivalent feelings about taking medication and what medication does (and does not do) for them.

  • Loss of/striving for independence

When viewing photographs expressing pain, many patients, across focus groups, commented on the idea of either losing their independence or striving for independence. The following quotations typify the frustration patients feel when experiencing loss of independence resulting from pain-related restrictions and also describe how patients may strive to be independent despite living with chronic pain

  • Effect on social interactions/relationships

The influence that living with chronic pain has on relationships was evident. Mostly, patients expressed how relationships with family members, children, friends, and the general public have been affected by their experiences.

  • Pain effect on activities of daily living

a patient mentioned that pain not only impedes what you do for fun but also inhibits performance at your job.

  • Constant search for convenience/ a better situation

Two specific locations emerged in which participants elaborated on their search for convenience: at home and while shopping. Setting up a bedroom to have all that is needed within grasp was common in this group, explained as stemming from mobility limitations resulting from chronic pain.

  • Interactions with physicians

Although several participants expressed that their doctor “understands” their pain, many comments were more negative in nature. These comments expressed a want for physicians to communicate with each other more and to try to understand what medication or procedures a patient has tried already.

Many individuals also felt their physician did not understand their feelings toward taking medication and just assumed they were seeking out more prescriptions.

  • Frustration/depression with pain

The narratives told by patients often pointed to an overall frustration with their current state of health. These instances focused on

  • the difficulty staying positive despite pain,
  • pain as interference in life,
  • questioning why one has to live with pain, and
  • a lack of understanding from others regarding the pain that one is experiencing.

Discussion

Our findings provide rich insight into the daily lives of primary care patients living with chronic pain.

Cameras served as a valuable mechanism to enable patients to capture meaningful images to show and then subsequently describe their personal stories regarding daily realities of living with chronic pain.

Simply having the opportunity to voice and share their personal experiences, in both individual and group formats, was both therapeutic and empowering for many patients in knowing they were not alone in their struggles with chronic pain.

Although photographs represented many diverse situations and obstacles, perhaps the most important finding was that the great majority of photographs depicted patients’ current experiences with chronic pain.

Only people who haven’t had to deal with it would be at all surprised.

Chronic pain hijacks our focus, making difficult to think about anything else. Our brain is bogged down with problem-solving to figure out how we are going to do the daily tasks most people take for granted, like shopping, house cleaning, bedsheet laundering, or even brushing teeth.

We have no time to frivolously fantasize about some magical pain-free future – all our experience and knowledge tells us exactly how it’s going to be: painful.

Patients took very few photographs portraying their future desires for what they would like their lives to be like without chronic pain. These findings underscore not only the all-encompassing “now” nature of chronic pain but also the inability of these patients to focus on the future.

In synthesizing focus group findings, the following overarching question emerged as a most critical one to address: “What can be done to improve these patients’ functioning and quality-of-life?”

If a patient finds that opioids are effective for them, they should be prescribed whatever dose that allows them to “participate in life” again. (By contrast, addicted people use illicit opioids to escape from life.)

Unfortunately, many patients foresee no hope for the future and were dissatisfied not only with their current functional status but also with the adverse effects stemming from taking large amounts of opioid medications on a regular basis.

I cannot imagine what these “adverse effects” would be beside constipation. Perhaps these patients have been told by their family, friends, and even doctors that “opioids are bad for you”.

Then, it logically follows that the “nocebo effect” would make them imagine that everything uncomfortable they are feeling, mental or physical, is due to those “bad” opioids.

With all the negative press about opioids, it’s a wonder that all patients aren’t feeling the negative side-effects opioids are accused of having. Or perhaps, even if they are, those side effects are still not nearly as severe as the pain would be without opioids.

Scientifically, opioids actually have far fewer side effects than any other medication currently prescribed for pain.

our results also highlight that patients are equally frustrated by the

  • medications,
  • adverse effects, 
  • limited activity, and
  • disability

resulting from chronic pain.

Patients often felt their physician did not understand their ambivalence toward taking medications and just assumed they were seeking out more prescriptions. Unfortunately, a perception such as this could have serious negative repercussions on the entire patient–physician relationship, which in turn could affect other aspects of general health care. Thus, the trusting relationship between the primary care provider and patient with chronic pain must be established over time in most incidences.

This wrongly named and highly hyped “opioid” crisis has destroyed our faith in doctors and the medical system.

Many of us assumed that our doctors were working “for us” and making decisions in “our best interests”. We thought our well-being was their highest priority because that’s what they agree to when they become doctors.

Alas, the covers have been ripped off this wishful thinking, laying bare the machinations of the medical/industrial complex that has swallowed American healthcare.

This monstrous corporate beast is now chewing and digesting what used to be medical “care” to extract every last dollar to feed its ever-expanding gluttonous reach into all aspects of medical practice.

Conclusion

Patients in this study were able to record photographs to help bring their daily experiences of living with chronic pain to life.

Given differing communication preferences among patients, a combination of qualitative methods, including Photovoice, may enable and empower some patients to more effectively relate their chronic suffering to health care professionals caring for them.

Disclosure

Dr. Haddox is a full-time employee of Purdue Pharma, L.P. The authors report no other conflicts of interest. This study was funded by Purdue Pharma, L.P.

Other thoughts?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.