The P-A-I-N-S Typology of Health Literacy Perspectives among Filipino Chronic Non-malignant Pain Sufferers: A Q Methodology Study

Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage (IASP). Acute pain is a positive experience that performs a survival function to promote behavior aimed at avoidance from actual or potential harm.[1] However, pain as described also depicts two negative characteristics: first, that of an interruptive and unpleasant experience [2,3] and second, that of progression to chronification when it persists long after its survival value is spent. Aldrich & Eccleston [4] derived a social constructionist analysis of acute pain (ie, short-lived) such as pain as malfunction; pain as self-growth; pain as spiritual growth; pain as an alien invasion; pain as coping and control; pain as abuse; pain as homeostatic mechanism; and pain as power. However, when the pain becomes chronic (ie, long-lasting), these first accounts are generally found wanting and are often replaced by more biomedical accounts of illness and cure.[5,6] When a person has pain that is chronic, the search for cure and meaning is intensified and can come to dominate. [7, 8]. Sooner or later the person with a chronic condition will be confronted with a discourse of adaptation and will be asked to contemplate acceptance of a life with pain.[9] Although the idea of living a full life despite chronic pain is common in therapeutic domains, it is counter-intuitive, especially for the chronic pain sufferers who are struggling to make sense of their experience.[10]

Health literacy (HL) is defined “as the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand, and use information in ways which promote and maintain good health.”[11]

The international discussion over health literacy often leans on the levels of health literacy created by Don Nutbeam [12]: basic/functional health literacy, communicative/interactive health literacy, and critical health literacy.[13-15] The lowest level of health literacy means that people know about health risks and health services.[16,17]

The goal of communicative health literacy is to provide an individual with the ability to function independently, with increased motivation and self-confidence. The action aims at benefitting the individual human being. The societal benefits come from the influence on social norms and increased group activity.[16,18]

Stewart, et al. [19] have suggested that health literacy could be expanded to cover also social, cultural, and environmental dimensions. Critical health literacy aims at personal and communal empowerment. It strengthens people’s persistence in times of facing social and economic trouble. People with critical health literacy can change general and organizational practices related to health and communicate with leaders and politicians to realize changes they consider important. Health literacy that is acquired early in life affects health positively during the whole lifespan.[20]

Brey, et al. [21] defined health literacy as the ability to search, interpret, and understand basic information about health and use the information to promote health. They divided individuals according to their information-seeking approaches to health literacy into four types: the critical thinker who studies the health problem and creates a solution; the responsible citizen who values his responsibility to maintain the community healthy, safe, and free from fear; the life-long learner who recognizes the need to use information about health during his or her whole life; and the efficient communicator who effectively expresses and shares his beliefs, ideas, and information about health to others.

The IMB model [20] recognizes three constructs—information, motivation, and behavioral skills—needed to engage in given health behavior, as specific individual determinants of behavior and behavioral change.[21]

Figure 1. The Information-Motivation-Behavior Model by Fisher and Fisher, 1992

Pain is a culturally invested construct and a private sensation that cannot be reduced by objectification. This paper proposes to segment the health literacy perspectives in the eyes of the Filipino chronic non-malignant pain sufferer through the lens of the social constructionism theory [22,23] and the IMB model.[20] The intent is to explore the extent to which such domains require a rethinking of the healthcare professionals' approach to the management of Filipino patients with chronic pain.

Research Design

The Q methodology is an approach to understanding subjectivity that combines qualitative and quantitative techniques.[26] Originally developed in the 1930s, it allows for a systematic investigation into the viewpoints or perspectives of the participants in the study.[27] Q is a semi-qualitative methodology to identify typologies of perspectives. It is appropriate to address questions concerning diverse viewpoints, plurality of discourses, or participation processes across disciplines. The perspectives are interpreted based on the rankings of a set of statements. These rankings are analyzed using multivariate data reduction techniques in order to find similarities between respondents.

Participants

A purposive sample of participants was assembled with the following inclusion/exclusion criteria: chronic pain of at least 3 months duration, age between 18 and 65 years, and no current malignant disease or co-morbidity. Written informed consent was obtained after the researcher oriented the participants regarding the objectives, course, and significance of the study. They were also oriented that their participation is voluntary and that they can withdraw from the study at any time they wish. Participants were assured that confidentiality will be adhered to at all times and the results of the study will only be reported in the aggregate. A robotfoto [28] was used to depict the demographic profile of the participants. Table 1 shows the demographic and other characteristics of the participants.

Table 1. Patient Demographics

Research Instruments

Three stages in data collection were undertaken for this Q-methodology study namely: the identification and sorting of statements (Q-sort), data analysis (Q-analysis), and interpretation.[29,30] A robotfoto [28] was used to depict the demographic profile of the participants.

Cultural analysis is necessary at the very first stage of Q methodology. This involves knowing the culture for talk about chronic pain to create a sortable set of statements.[31] Previous studies on chronic pain by the author [32] and other pain researchers and clinicians [33] served as the basis for some of the statements in the Q-sort.

Table 2a. Major Themes represented in the Final Q-set

Table 2a lists the major themes that represented the final Q-set. The statements used as the Q-sample are clustered around four conceptual frames. Studies were explored for statements to clarify specific domains related to chronic pain such as catastrophizing, acceptance, SE, and self-management. Each of the themes comprised a minimum of eight statements.

Table 2b. List of Statements (Q-Sample)

Table 2b. depicts the List of Statements or the Q-sample.

Pain catastrophizing is defined as “overappraisal” consisting of a set of maladaptive beliefs of the negative aspects/consequences toward an actual or anticipated pain experience. It is a cognitive process whereby a person exhibits an exaggerated notion of negativity assuming the worst outcomes and interpreting even minor problems as major calamities. Catastrophizing has been found to be instrumental in exacerbating the chronic pain experience. In patients with chronic pain, catastrophizing is a significant determinant of self-rated pain intensity and disability.

Acceptance of chronic pain is typically centered on the concepts of activity engagement (the pursuit of life activities regardless of pain) and pain willingness (recognition that avoidance and control are often unworkable methods of adapting to chronic pain).[34,35] Authors further aver that acceptance of pain can be relevant because greater acceptance of and consequently less time and energy spent struggling and avoiding, pain may free up behavior to allow for the pursuit of a better quality of life.[34,36]

Self-efficacy (SE) is a recurring factor within the patient factors in the HL model.[37] SE is defined by Bandura as. “confidence that one can successfully execute a course action to produce a desired outcome in a given situation and contended that SE determines how much effort and persistence people exhibit in the face of obstacles or aversive experiences”.[38] Thus, for people with chronic pain, SE not only includes the expectation that a person could perform a particular behavior or task but also their confidence in being able to perform a task despite the pain. La Touche, et al. [39] found that among chronic low back pain patients the high SE group had less pain in the temporal summation lifting task, a greater range of motion, and greater functional range, in addition to a lower influence of psychological factors.

Many health literacy interventions have a limited focus on functional/cognitive skills. In psychosocial models, the capacity to act however is seen as a major driver of behavioral change. This aspect is often lacking in health literacy concepts. While SE involves thought processes, self-management refers to strategizing behaviors that include: communication with caregivers, partnership in care, self-care, self-advocacy, and medication adherence.[40]

Data Collection

Each statement from the Q-set was printed on 5” x 8” index cards (Q sort pattern: -4 (2 cards), -3 (3 cards), -2 (4 cards), -1 (5 cards), 0 (5 cards), +1 (5 cards), +2 (4 cards), +3 (3 cards), +4 (2 cards)). The participants, otherwise known as the P-set (5,8) were asked to categorize the statements into three piles: agree, disagree, and neutral. Next, they were instructed to place the statements on the Q-sort table (Figure 2) a 9-point Likert scale.

Figure 2. The Q-Sort Table

The participants were first asked to divide the 33 questions into two parts: the “agree” and “disagree” statements. The participants were then instructed to place the statement they most agree with on the rightmost column, then alternately to place the statement they most disagree with on the leftmost column in the Q-sort table. This they do alternately until all the boxes are filled up. The neutral pile was ranked in the remaining slots in the middle. There were limited numbers of statements that could be assigned to each score. Finally, the participants were asked to justify and elaborate on the placement of statements on the Q-sort table.

Q Analysis

After the Q-sorts had been obtained and completed, they were subjected to the by-person factor analysis (centroid factor extraction) and then rotated with the Varimax method using the PQ method software version 2.11.(41–43) This was done to limit the number of resultant ways the statements were sorted. A composite sort was computed for each factor representing how a participant with a 100% loading on that factor would have ordered the 33 statements.

The factors were then interpreted and illustrated as profiles using the defining statements (those with factor score of -4, -3, +3, and +4 in the composite sort which were determined as the extreme ends of the Q-sort table [statements placed under column no. 9 were scored as +4 and those placed under column no. 1 were scored as -4]). The distinctive statements (those with statistically significant different factor scores as compared to all other factors; p<0.05) and the anchors and phenomenal referents were then used to determine the chief characteristics of each factor profile.[44] The principal themes were evolved using the inductive approach wherein frequently reported patterns are reflected and extensively varied raw data synthesized into brief summary formats. This approach can also develop a model/theory about the underlying structure of experiences in the gathered data.[45] The peculiarity of each profile that was generated lies in the in-depth discussion of the difference among profiles based on the four main profiles generated.

Table 3 shows the different factor characteristics delineating the average relative coefficient [ARC], the composite reliability [CR], and the standard error of the Factor Z scores.

Table 3. Defining Variable of the Various Factors loaded.

S.E. - standard error

Of the 30 participants, 12 of them were loaded to Profile A (ARC = 0.80; CR = 0.98), 13 were loaded to Profile B (ARC = 0.80; CR = 0.981), 2 to Profile C (ARC = 0.80; CR = 0.889), and 3 to Profile D (ARC = 0.80; CR = 0.923). Correlation between factors 1 and 3 (r = 0.5767), 1 and 4 (r = 0.5869), and 3 and 4 (r = 0.425) are moderate to high while there is a low negative correlation between factors 1 and 2 (r = -0.2616) and 2 and 3 (r = -0.1375). The factor matrix indicating the defining sort for the different statements were classified according to profiles. For the description of each profile, the statements from the Q-sample as depicted in Tables 4-7 (figure in brackets), highlighting on the characteristic statements and the transcripts from the initial and post-sort interviews (enclosed in quotation marks) were used. The group had five consensus statements.

Factor 1 (Profile A) (Table 4)

The perspectives of Profile A participants are clustered about not worrying whether the pain will end, but believing in their ability to live life as well as people who have no pain. They negate the idea of pain as a punishment for previous wrongdoings. They have neutral perspectives about running away from the pain experience; and agree that they have some control over their pain. They rely on pain medications to control pain but take their medications only when the pain becomes bothersome.

Table 4. Distinguishing Statements for Factor 1 (Profile A)

Factor 1(Profile A)

Factor 2 (Profile B) (Table 5)

The participants’ perspectives in Profile B centered mostly on the catastrophizing thought processes of not being able to live life as well as other people who are pain-free, worrying all the time about whether the pain will end and about how disabling the pain has become. Generally adherent to their pain medications, they nevertheless think that their pain medications cannot really control their pain. They prefer to seclude themselves and refrain from socializing, thinking that no one can help them with how they feel. They negate self-management skills related to open communication with their physicians and self-advocacy such as maintaining a healthy diet, particularly in refraining from eating food that may exacerbate their pain conditions.

Table 5. Distinguishing Statements for Factor 2 (Profile B)

Factor 2(Profile B)

Factor 3 (Profile C) (Table 6)

The participants’ perspectives clustered in Profile C engage in proactive information-seeking through the Internet regarding their pain condition. They have neutral to negative perspectives regarding activity engagement when in pain, although they strongly negate catastrophizing thoughts.

Table 6. Distinguishing Statements for Factor 3 (Profile C)

Factor 3(Profile C)

Factor 4 (Profile D) (Table 7)

The perspectives of Profile D participants are clustered and centered around accepting that pain is a punishment for previous wrongdoing, although they understand that pain does not inevitably mean disability. They have neutral perspectives about socializing and exhibit unwillingness to give up unproductive ways of trying to control their pain. They have reservations about asking their physicians a lot of questions about their chronic pain condition. They strongly negate the thought that they lack help extended to them about their pain condition.

Table 7. Distinguishing Statements for Factor 4 (Profile D)

Factor 4(Profile D)