Using nominal group technique to assess chronic pain, patients' perceived challenges and needs in a community health region

Abstract

Purpose  The purpose of this study was to better understand the experiences of people suffering from chronic pain in order to plan client‐centred educational interventions.

Methods  People in the community with chronic pain were invited via newspapers, newsletters and e‐mail discussion lists to participate in a needs assessment process and to attend an educational session at a local community college. Using the nominal group technique, which is a qualitative method of data gathering, 53 participants reported their perceived challenges and needs in dealing with chronic pain. Participants were randomly assigned to one of 10 groups ranging from three to seven people. Responses were pooled to develop an overall list of their major concerns and needs.

Results  Issues were classified into six priority areas: medical and treatments, problems with daily living, emotional distress, social issues, sleep disturbances and financial issues. Participants indicated they had difficulty finding accessible, effective and acceptable care. Many participants perceived their family physician or other health‐care providers were not adequately meeting their health‐care needs. Specifically, sleep disorders; feeling of depression, irritability, worry and anxiety were perceived as medical and treatment areas requiring improvement. In addition, participants sought greater validation of their lived experience of chronic pain.

Conclusion  Participants perceived that their needs were not being met adequately. There is a need for further study on physician–patient communication and its impact on patient health status and disability.

Introduction

Since 1980 there has been a growing qualitative and quantitative literature base about people with chronic pain, its prevalence, aetiology and management as well as a better understanding of some of the challenges experienced by people with chronic pain. ¹ , ² Chronic pain can impact employment, family relationships and overall social functioning, and may exacerbate or lead to depression, health concerns and withdrawal from activities. ³ Individuals with chronic pain have a serious impact on health‐care resources and health utilization. Miller ⁴ reported people with chronic pain experience more disability days, spend more time in hospital, have more frequent doctor visits and have greater medication use. Based on the 1998–99 National Population Health Survey ⁵ (NPHS) in Canada, 12.4% (3.47 million) of the population aged 4 or older, excluding residents in institutions, reported having chronic pain, 30% reported their pain as mild, 55% as moderate and 15% reported their pain as severe. There were age differences in severity with 8% of 15–24 year‐olds with chronic pain reporting it to be severe, by ages 45–64 the proportion was 20%.

The purpose of this study was to better understand the experiences of people suffering from chronic pain with the aim of exploring the client‐perceived needs and potential client‐ identified solutions to inform the development of interventions to assist them. To gather data, people with chronic pain were invited to participate in a needs assessment process and attend an educational session introducing a chronic disease self‐management programme.

Need assessment methods are used by a variety of stakeholders to identify and examine values and information for many purposes. ⁶ The PRECEDE–PROCEED^* model is a systematic framework developed by Green and Kreuter ⁷ to enhance the planning and implementation of educational programmes in the health promotion field. The model emphasizes a comprehensive diagnosis of the nature of the problem, the desired outcome, the context of the client and the identification of potential barriers that could interfere with producing the desired outcome. ⁷ A first step of the diagnosis is concerned with an analysis of social problems or quality‐of‐life concerns.

In group interactions, power is not evenly distributed, as the more vocal individuals often influence the outcomes because of their ability to express their concerns and opinions. One method to systematically gather data and elicit participation from all participants is the nominal group technique (NGT). ⁸ , ⁹ The NGT has been used in several research studies to elicit concerns of a particular population and to establish priorities. ¹⁰ , ¹¹ , ¹² , ¹³ As a qualitative approach, this technique is driven by the opinions and needs of the participants and not by the perceptions of the researchers. The highly structured interactive process allows much information to be elicited in a short time period.

Methods

The stages of the NGT are (i) listing, (ii) recording, (iii) collating and (iv) prioritizing. ¹⁴ The purpose of the research was to develop an understanding of the needs and requirements of individuals with chronic pain and of the impact of pain on their daily lives.

Procedures

Members of the target community were invited to attend a needs assessment public forum at a local community college. The forum was advertised through newspaper advertising, internet e‐mail lists concerned with chronic pain and arthritis, bulletin board postings at community centres and the community college. The advertisement indicated that individuals with chronic pain were invited to participate in a research forum designed to examine their needs. Included in the forum was an educational workshop on strategies to manage pain. The workshop was not part of the research process but was offered as an encouragement to participate in the needs assessment. The ethics committee of a participating university approved the research.

At registration, participants signed consent forms and were given copies for their own records. The population of 53 participants was divided into 10 groups of three to seven people. During the registration process, the participants were randomly assigned to a focus group by drawing a number between one and 10 from a bag. Participants were given a demographic survey and a pain questionnaire to complete during registration. Following an introduction about the purpose and programme activities for the half‐day activity (2 h NGT, lunch, 1 h education session), participants were directed to their designated work group area to meet their facilitator.

Each group was lead by a facilitator who had received written information by mail about the NGT process prior to attending the event. A 45‐min briefing and role playing in the NGT process with all of the facilitators was held 1 h prior to the event. Two of the researchers, who were also group facilitators, gave the briefing sessions. The facilitators guided the participants through the process. Each group was given two questions to address separately. The first question focused on their problems as individuals with chronic pain, ‘What problems do you experience when dealing with your chronic pain?’ The second question focused on what they thought would be helpful to them, ‘What would you like to see happen to better meet your needs as a person in pain?’ Each question was written on a flip chart so that it would be visible to the participants during the NGT.

The following four components of the NGT were used in the assessment process:

• 1Group members were asked to work alone for 5 min and to generate their ideas or concerns in writing. There was no discussion during this stage.
• 2Following the individual generation of ideas, responses were elicited in a round‐robin fashion. The facilitator recorded the ideas or recommendations of each group member in short phrases on the flip chart. At this stage, if any items were ambiguous they were clarified so that every group member understood the meaning of each item. The group facilitators remained neutral and recorded the participants' concerns as they were given.
• 3The responses were now collated, clarified, simplified and grouped logically.
• 4Prioritizing involved voting on the priority of the items. Group members were asked to select from the list on the flip chart, the five items they perceived to be most important to them individually, and to record them. The group priorities were then derived through ordering or rating by each individual member. A final list of items with the highest number of votes was compiled. The remainder of the items was listed in descending order.

Participants

The age of the participants ranged from 15 to 80 years and there were many females than males in the group (see Table 1). The majority of the participants (69%) reported that they had chronic pain for more than 2 years. Twenty‐two per cent reported chronic pain for longer than 1 year but <2 years. Two people reported chronic pain <6 months. Thirteen participants (24.5%) were either self‐employed or employed, seven participants (13%) classified themselves as homemakers, one individual was a student, and the remainder of the participants, i.e. 24 participants (45%) were unemployed or retired (see Table 2).

Table 1.

Age and gender of participants

Age	Males	Females	Both
Under 20	0	2	2
20–29	0	3	3
30–39	2	4	6
40–49	2	7	9
50–59	4	12	16
60–69	2	8	10
70–79	2	3	5
80–89	1	0	1
Total	13	40	53

Table 2.

Employment and disability status

Employment status	Not receiving disability payments	Receiving disability payments	Total
Homemaker	6	1	7
Self‐employed	3	0	3
Employed	10	3	13
Unemployed	7	5	12
Retired	9	3	12
Student	1	0	1
No answer	5	0	5
Total	41	12	53

Priorities

Each group listed their five top priorities (see Table 3). The results were tabulated, resulting in six top priorities among the 10 groups.

Table 3.

Top six priorities (sorted by frequency)

1	Medical and treatment issues	15 (30%)
2	Problems with activities of daily living	11 (22%)
3	Emotional distress	10 (20%)
4	Social issues	6 (12%)
5	Sleep disturbance	5 (10%)
6	Finance	3 (6%)

Data analysis

The data was examined for the top priorities of each group. Four investigators (nursing professor, medical educator, family physician and psychiatrist) independently developed a classification system. Differences in classification were discussed and through consensus, a standardized classification system was used. Two investigators reclassified individual and group responses and differences were discussed with a third investigator. The issues that were common to all participants who participated in the 10 groups are described in Table 3.

Medical and treatment issues

Many participants expressed concern about their medical treatment. They indicated that they had difficulty finding accessible, effective and acceptable health‐care. Skilled health professionals, specialized medical pain management specialists and disability services were not readily available when the participants had acute problems and at other times.

Several participants commented that they had experienced unacceptable attitudes and behaviours from their physicians. These included being dismissed, not being believed, receiving insensitive treatment and insensitive comments. Several participants commented their physicians displayed a lack of compassion and understanding.

When [I'm] having a flare‐up, I have a very hard time getting help for pain. Doctors think it is ‘in your head’ and instead of getting pain medication, I'm given antidepressants. Yes I am depressed but it is the pain that causes the depression.

Some participants believed their medical practitioners lacked knowledge about pain management and consequently believed they had prescribed improper treatment. One concern was that a first diagnosis hampered subsequent diagnoses, for example if a patients was diagnosed with depression it was more difficult to get treatment for pain. Treatment provided only short‐term relief, some prescribed exercise, and activities increased pain, and sometimes participants felt like ‘guinea pigs’ as various treatments were tried. Participants identified that the side‐effects of drugs made some treatments unacceptable and did not always provide relief. ‘I’m not able to take strong medication due to my allergy to codeine'. Another participant commented, ‘The use of Tylenol #3® causes severe constipation which is almost as bad as the disease.’

In response to their perceptions of treatment, many participants felt they lacked knowledge about managing their condition and about making treatment decisions. Some indicated they did not get clear information about medications, were not aware of available services and felt a need for supportive advocates. One participant commented, ‘I am indecisive regarding available treatments, trying to decide whether financial outlay is worth the risks of not [trying anything] especially with [having] a low income…’

Activities of daily living (mobility and physical issues)

Pain is pervasive and affects almost all activities of daily living. Difficulties were experienced in finding physical comfort, dressing and undressing, lifting, driving, doing housework and other work and recreational activities. Lack of mobility increased dependence on others, as one participant wrote, ‘I can’t care for myself when I'm in the worst condition'.

Pain on movement was a major concern for some participants. Any activity, including getting out of bed caused problems. Inability to exercise meant gaining weight. Others noted the progressive nature of their problems and the difficulties in recovering. ‘My pain only frees me about 2 days a month and at times it won’t stop'. Participants wrote that they had pain in many body areas including back, neck, arms, legs and even bowels. One participant wrote, ‘Diarrhea, hemorrhoids, swollen skin tags, fistulas are part of my day. What fun eh!’

Of the physical problems, sleep disturbances and fatigue were major problems. Chronic pain in itself can be fatiguing and most participants reported sleep problems. Poor sleep contributed to fatigue and to depression. One participant wrote, ‘Rheumatoid arthritis, pain all over [my] body when the attack is on, pain in hands is chronic but varies [in] intensity. This pain makes sleep impossible some nights’.

Emotional distress

Psychological problems were a major area of concern. Several emotional reactions were listed such as anger, depression, anxiety, irritability, upset feelings and limited patience. Mood swings and negative feelings contributed to disturbances in relationships and created high levels of stress.

Participants expressed frustration at many situations such as not having answers to their problems, or not knowing what caused their pain. ‘I am frustrated with myself for not being able to control my pain, and sad [because I] don’t know what would help'. For many individuals the future was uncertain and they felt let down when pain‐relieving methods did not work. Cognitive symptoms were also reported including confusion, forgetfulness, decreased ability to concentrate, problems making good decisions due to sleeplessness and an inability to focus on anything but pain. ‘Pain affects my memory too, I could not do much about studies. I read a lot for comfort but don’t remember much'.

Social issues

Pain impacted on the participants' social lives as they experienced difficulties interacting with family, friends and society. The lack of predictability and ability to plan ahead affected many aspects of life, ‘I cannot go out with my spouse because of uncontrolled pain’. Participants indicated that changes in lifestyle had diminished their quality of life. One participant commented that being unable to work made him more socially isolated and bored. ‘I feel less than special as my closest friends and I enjoy many activities and [I] cannot do these at present because of pain and awkwardness. [My] self‐worth decreases.’

Many people commented they had experienced discrimination, and lack of support and understanding about the impact of pain on their lives. There were many comments about the invisibility of chronic pain and the feeling of being stigmatized. ‘The public have a hard time believing in your pain, if they can’t see it, it does not exist'.

Participants felt powerless to influence some factors in the social world that markedly affected their lives. For example, if they were involved in litigation, the process was time‐consuming and the paperwork was complex and there were few services to assist them. For example, one young woman said childcare was a problem for her, and if she was suddenly taken ill there was no one to help her. Age discrimination was also mentioned, as there were services and some group support for the older age groups but nothing for young people. Other comments included the lack of understanding from employers and lack of work rehabilitation.

Financial issues

Costs of medication, therapy, equipment and complementary/alternative treatments were financial burdens, especially if such treatments did not result in improved health outcomes.

When you need certain exercise equipment or instruction on how to get better, if you can't pay for it, you can't have it. If you need a new bed, etc. it is hard to get one. The process is so hard, you feel like giving up.

There was interest in the complementary and alternative medicine but some participants indicated that their physicians hesitated to recommend these as adjuncts or options. This was a quandary for those participants who wanted to try these alternatives but were unsure about their effectiveness. For some participants, chronic pain limited their ability to work, as one participant commented, ‘I could not hold my job as a nursing assistant [as this type of work was] very heavy for my joints’.

Client‐centred solutions

For the second question, the NGT was used to ask the participants what would be helpful to them as individuals in pain. Their requests for assistance mirrored the descriptions of their needs. Many indicated that improvements in treatment, education and services, as well as greater public awareness and financial support, would lead to improvements in their quality of life. Table 4 lists their solutions in order of priority.

Table 4.

Client‐centred solutions

1	Medical and treatment issues
2	Education
3	Public awareness
4	Financial needs

Improved treatment

The first identified priority was improved treatment. Participants indicated they wanted access to competent, knowledgeable physicians and for those physicians to demonstrate compassion and understanding. Some participants commented they needed other health professionals such as physiotherapists and occupational therapists to be available as needed. A recurring theme is reflected in the following quote ‘awareness that the pain is real’. They also wanted effective medications and ‘clearer information on medications and on their diagnoses’.

I feel I get passed from one doctor to another. The [alternative] treatments for the knee were expensive and worked not at all. The arthritis in the knee developed after an ill‐fitting air cast was applied after original cast for broken fibula had been removed. The tendonitis – no treatment received. Bursitis – one cortisone treatment. Numbness in left arm – my doctor said it was related to neck problems and to ignore it. Which is ridiculous!

Education and services

The second priority was education. Participants indicated they wanted to learn about pain and how to manage it. Some participants wanted information about exercises to lessen pain. Several of the participants indicated they wanted improvements in services including access to a multidisciplinary pain centres so that there was a more coordinated approach to their care. Access to support groups was considered important for themselves and their families. There were strong indications that participants wanted to help themselves and not depend upon health professionals. ‘Every health worker tells me what my pain is and gives me bits of information that I have not been able to amalgamate into a plan of action’.

Public awareness

A major concern was feeling stigmatized. As their disability was not visible they felt they were not credible. Many requested improved public awareness and education at schools, community settings, as well as more public forums to bring greater awareness of chronic pain issues to the community. One participant wrote, ‘people in pain are physically challenged but not disabled’.

Financial support

Financial issues were a concern as for some individuals pain limited their ability to be employed. Participants wanted affordable treatment, counselling and assistance in making modifications to their homes. Some participants suggested tax deductions for adjustments to their homes and for essential equipment such as wheelchairs. Re‐training for work was identified as a need along with supportive employers who were willing to take people with disabilities. Government subsidies could, according to the participants, be offered as an incentive to employers willing to hire people hindered by chronic pain.

One participant noted, ‘Hell! Never realized how many people must suffer so much and how little is being done to help’. Another participant remarked that the extent of their concerns and the lack of solutions were so apparent, he suggested legalized euthanasia.

Discussion

As noted by Charmaz ¹⁵ qualitative analysis can provide health‐care workers with an understanding of their patients' beliefs about and views of their illness. Many people reported they felt their physician and other health‐care providers offered little support, providing little or no validation of their ‘pain’ experience. This lack of validation continued in their social life, resulting in a greater challenge of having an invisible impairment/disability. The degree of patients' level of ongoing anxiety about the future indicated a great need for realistic patient reassurance. The perceptions of these participants was that the impact of chronic pain on their roles and relationships were not adequately addressed in treatment plans, nor was the impact on their social life, leisure activities and hobbies outside the home managed adequately, resulting in increased feelings of isolation and alienation. Some problems were specific to only a few individuals, but the nominal process was helpful in uncovering issues and situations that might not otherwise be known such as problems experienced by the younger sufferers.

Understanding patients' attitudes is particularly important considering the findings of a recent systematic review of the evidence for a relationship between patient's recovery expectations and health outcomes. ¹⁶ Mondloch et al. ¹⁶ concluded that physicians have a role in assisting patients to set realistic and feasible recovery goals, this may improve patients' adherence to treatment protocols and foster their motivation to work towards achieving these goals. This calls for frank and supportive dialogue between health‐care providers and patients.

In today's health‐care system the relationship between health‐care providers, primarily physicians and patients is changing to become less paternalistic and more of a partnership. For example, models of collaboration are being developed between physicians and the lay public. ¹⁷ These changes are considered to be beneficial to both providers and care recipients, provided the patient wants to be involved in decision‐making and is informed during the process.

Some research has identified that patients negotiate with their physicians, demanding and receiving unnecessary treatments, such as antibiotics. ¹⁸ However, the perceptions of the participants in this study indicated that they felt powerless in the health‐care system and were not able to receive the treatments they needed to control their pain. Most voiced comments were directed towards physicians probably because they are the health‐care providers they saw most often. Previous research has identified that physicians lack knowledge about pain and pain management, are reluctant to prescribe opioids and may hold negative views about patients in chronic pain. ¹⁹ Health‐care providers need to improve their knowledge of pain management to assist this group and to be conscious of how their attitudes may impact on this vulnerable group. Patients' perceptions of inadequate support could be addressed, in part, by strategies that would empower them so that they can negotiate the health‐care system.

This research also identified that when patients' needs were not met by the traditional health‐care system, they wanted access to complimentary and alternative therapies. Some patients commented that their physicians were hesitant to recommend alternatives. For the well‐researched therapies, this option is viable, but for those therapies with minimal or no validity this can be an additional source of confusion, disappointment and an additional expense many cannot afford. There is a growing trend for patients to visit complimentary and alternative therapists as well as to use complimentary and alternative therapies. ²⁰ , ²¹ Physicians need to assess their patients and provide advice on recommended complimentary and alternative therapies. Previous research identified that <40% of patients disclose their use of complimentary and alternative therapies to physicians. ²⁰ Eisenberg et al. ²⁰ calls for more research into the effects of these therapies.

The results of this study also suggest that access to pain clinics is a problem because of the limited number of these services and geographical problems. Support services such as the self‐management programme for chronic pain as described by Lorig et al. ²² could provide knowledge and skills about pain management for these patients. Chronic pain is an area that remains quite resistant to improvements. Support needs to be extended to permit patients to manage their own pain as much as possible. Some success has been achieved with chronic pain self‐management programmes located in the community. ¹

Further research is required regarding: (a) the impact of physician–patient communication on patient health status and pain; (b) the effectiveness of multidisciplinary pain clinics; (c) evaluation of prescribed treatment regimens; (d) strategies to provide adequate psychological support to address pragmatic issues of people living with chronic pain and (e) the usefulness of treatment plans in facilitating functional improvements (such as ADL, and returning to work).

Limitations

The generalizability of the findings is limited because the population was a convenience sample of those with chronic pain who were aware of the workshop and were able to attend. It is not a substitute for representative sampling but can serve as a means of developing questions for more in‐depth surveys. The NGT is helpful in identifying and ranking patients problems and in encouraging reticent individuals to speak during group discussions, however, the NGT process does not provide an opportunity for group discussion for more in‐depth planning of identified client‐centred solutions.

Conclusion

The purpose of the study was to look at perceived needs and potential client identified solutions pertaining to a specific target group in the community. The people participating represented part of the target population in the region. Many participants perceived their family physician or other health‐care providers were not adequately meeting their health‐care needs. Specifically, sleep disorders, feelings of depression, irritability, worry and anxiety were perceived as medical and treatment areas requiring improvement. In addition, participants sought greater validation of their lived experience of chronic pain. Alternative measures to improve self‐management and accessibility of treatment especially during acute flare‐ups were also indicated. Evidence‐based knowledge about treatment efficacy is needed to benefit both patients and physicians and strategies for effective dissemination are also required.

The problem of chronic pain remains challenging for both patients and health‐care professionals. Finding comprehensive and multifocused strategies are needed urgently to combat this problem, not only from the economic perspective but also for compassionate reasons.