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Help‐Seeking Behavior for Chronic Pain: A Study Underpinned by the Theory of Planned behaviorDr. Nicola Cornally, PhD

Conflict of Interest Disclosure

– A. Nicola Cornally, No conflict of interest

– B. Geraldine McCarthy, No conflict of interest

Objectives• Present an explanation of the concept of help-seeking behavior

• Provide an overview of the application of the Theory of Planned Behavior

• To demonstrate the process of developing a questionnaire to measure the concept of the Theory of Planned Behavior

• To present the findings from a large study on the factors influencing help-seeking for chronic pain using the newly developed ‘‘Attitudes, Beliefs and Help-Seeking Intentions for Chronic Pain Questionnaire’

• Explore reasons why people do not seek help

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Overall Study Aim• To identify the factors that determine why some people are more likely than others to seek help from Healthcare professionals for chronic pain

using the Theory of Planned Behavior.

Significance of the topic • High percentage of people with chronic pain do not seek help (Veale et al., 2008), some take up to 5 years before seeking help (A European Consensus Report, 2010)

• Breen (2002) states that people living with chronic pain are more likely to suffer from depression, anxiety and reduced activity. While social isolation, sleep disturbance, increased suffering (Tsai et al, 2002) relationship breakdown and poor self-esteem (National Pain Summit, 2010), increased risk of falls (Leveille et al, 2009) are some additional negative outcomes of living with chronic pain

• Early intervention equals better patient outcomes, reduction in the incidence of complex chronic pain syndromes that require invasive, expensive interventions (Bedson et al., 2007

Jordan et al. (2006) concludes that there is a lack of strong explanatory factors as to why people seek help, thus, the need to direct research on the decision making stages of the process, as this may provide more meaningful answers on the motivational factors associated with seeking help for chronic pain.

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Existing evidence • Females more likely to seek help for chronic pain (e.g.

Hagen et al, 2000; Smith et al, 2001; Jacob et al, 2003; Walker et al, 2004)

• Increasing age associated with help-seeking (e.g. Jacob, Zeev and Epstein, 2003; Dominick et al, 2004; Watkins et al, 2006)

• People with more severe pain and disability seek help (Cote et al, 2001; Smith et al, 2001; Walker et al, 2004; Bedson et al, 2007; Miro et al, 2007; Leung et al, 2008)

• Those with Age-related beliefs more reluctant to seek help (Sanders, Donovan and Dieppe, 2004; Turner et al, 2007; Calnan et al, 2007)

• Past-help seeking influences future behavior (Sanders et al, 2004; Calnan et al, 2007)

• Social influence may encourage or discourage someone to seek help (Jinks et al, 2007; Sheppard et al. 2008)

• Peoples outcome expectancy may impact on help-seeking behavior (Sanders et al, 2004; Calnan et al, 2007; Jinks et al, 2007; Shaw et al, 2008)

• Social cost described as a influencing factor (Sheppard et al., 2008; Shaw et al., 2008)

Research gaps identified • Emphasis on measuring demographic and clinical

factors associated with help-seeking (providing evidence on who seeks help rather than why)

• Lack of theory driven investigation into the determinants of help-seeking, over use of Health Service Utilisation Model (focus on structural and socio-demographic factors)

• No empirical evidence presented on the relationship between age-related belief, past help-seeking, outcome expectancy and social cost on help-seeking for chronic pain (5 qualitative studies sourced)

• Attitude greatest predictor of behavior (Ajzen, 1991)

• No study measuring attitudes towards seeking help for chronic pain.

• No instrument to measure attitudes towards seeking help for chronic pain

Help-seeking behavior: The Concept • What is help-seeking behavior

What must happen first?(the stage is set)

How do you recognise it?(Characteristics)

How do we know it has occurred?(Can we measure an instance of the concept) What could occur as a result?

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What is help-seeking behavior? It is a problem focused, planned behavior involving interpersonal interaction with a

selected helperWhat factors influence help-seeking behavior??What theory can help me understand how/what determines a planned behavior……..

The Theory of Planned behavior

The Theory of Planned behavior

Theory of Planned behavior (expectancy-value model)(Ajzen and Fishbein, 1991, 2002, 2006, 2010)

Theory of Planned behavior is explored to understand the social and cognitive factors which influence help-seeking behavior. Empirical evidence for applying the TpB to investigate factors influencing help-seeking behavior is abundant, but never used to in the context of help-seeking for chronic pain.

Theory of Planned BehaviorAdvantages • A number of studies [e.g., Quine, Rutter

and Arnold (1998); Bish, Sutton and Golombok (2000)] have demonstrated that the Theory of Planned behavior has greater predictive power over the Health Belief Model.

• The theory has a superior focus on the psychosocial influences of help-seeking behavior compared to other models.

• Neither Andersen and Newman’s Model nor the Health Belief Model provide sufficient empirical guidance regarding the relationships between variables (Vernberg, 1998).

• Provided a structure for the literature review and underpinned the conceptual framework from which hypotheses were formulated.

Disadvantages

• Development of an instrument to operationalize the key concepts

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Method • Three phased study Phase 1: questionnaire development (n=25) Phase 2: pilot study (n=30)Phase 3: descriptive, correlational, cross-sectional study (n=>200)

Elicitation Study • Operationalizing the concepts - bringing them to life within the context of help-seeking behaviorfor chronic pain

Aim of Elicitation Study

• To describe the salient attitudes and beliefs of people

with chronic pain regarding seeking help from a

health care professional

• To identify and generate items for the development of

a questionnaire

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Method • Design: A qualitative descriptive design was used to elicit the salient attitudes and

beliefs of the population under investigation.

• Sample and procedure: The recruitment of participants took place through Chronic

Pain Ireland. People were eligible to participant if they were over the age of 18

years and experienced pain for more than 3 months duration. Interviews were

arranged with the first 25 people who responded to the email expressing their

interest in participate in the study.

Data CollectionThe construction of a TpB questionnaire involves conducting structured interviews

with adults experiencing chronic pain. The structured interview guide contained 9specific questions asking the participants to list:

• advantages and disadvantages of seeking help

• people they think would support or disapprove of them seeking help

• the barriers and facilitators to seeking help for chronic pain from a healthcareprofessional

In addition participants were asked how their pain developed and where they firstsought help. Some demographic details were also requested. Interviews were tape

recorded following verbal consent by participants and lasted between 15-30 mins.

Data AnalysisData from the interviews was first transcribed on to a word document.

Subsequently the data was analysis using manifest content analysis (Graneheim and

Lundman, 2004 p. 106), and grouped according to the predeterminedcategories/subcategories of the theory of planned behavior.

These were subsequently labeled ‘meaning units’. The meaning units were then

reread and the key words extracted to form ‘condensed meaning units’.

This data was then presented in table format for ease of interpretation and furthercommonalities were assembled. Codes were then developed to reflect the meaning of

frequently occurring statements within each category.

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Major themes identified

Resulting items generated for TpB questionnaire

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Attitudes and Beliefs Towards Seeking Help for Chronic Pain Questionnaire • Contains 4 Scales & 6 Subscales:

Section 1: Direct attitude towards seeking help for chronic pain (3 items)

Section 2: behavioral beliefs (12 items)

Section 3: Outcome evaluation (12 items)

Section 4: Direct subjective norms (3 items)

Section 5: Normative beliefs (5 items)

Section 6: Motivation to comply (5 items)

Section 7: Direct Perceived behavioral Control (3 items)

Section 8: Control beliefs (10 items)

Section 9: Influence of control beliefs (10 items)

Section 10: Intention to seek help (3 items)

Total items = 66 items

Indirect Attitude

Indirect Subjective Norm

Indirect Perceived behavioral control

Descriptive, correlational study • Aims

To investigate the determinants of help-seeking behavior for chronic pain using the newly developed theory of planned behaviorquestionnaire

To establish psychometrics of the newly developed instrument

• Method

Descriptive, cross-sectional, correlational study

• Sample

N=292 (2months data collection)

• Data collection

Newly developed TpB questionnaire, online survey (survey monkey) Chronic Pain Websites

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FindingsDemographic Profile

In relation to gender distribution the majority of participants were female (82%, n=239), while only 18% (n=52) were male.

On-set of Chronic Pain

• One hundred and sixty five participants (58%) indicated that their pain began more than 5 years ago; fewer than 38 participants (12%) had chronic pain for 1 year or less.

Group support and specialist care

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Past Help-Seeking behavior

Chronic Pain Grade

Direct and Indirect Attitude Towards Seeking Help

Items for Direct Attitude Scale Percentage Response Unpleasant 2 3 4 5 6 Pleasant

1.Seeking help for chronic pain is 18%(n=49) 18%(n=49) 23%(n=62) 19%(n=50) 9%(n=23) 6%(n=16) 8%(n=22)

Bad 2 3 4 5 6 Good

2.Seeking help for chronic pain is 5%(n=11) 9%(n=23) 11%(n=27) 17%(n=42) 14%(n=35) 6%(n=15) 38%(n=92)

Useless 2 3 4 5 6 Beneficial

3.Seeking help for chronic pain is 6% (n=15) 12%(n=31) 12%(n=32) 17%(n=44) 13%(n=35) 9%(n=23) 32%(n=86)

Indirect attitudes (behavioral belief) was calculated across the 2 sub-scales i.e. each item on the outcome evaluation scale was multiplied by a corresponding item on the outcome evaluation scale. The mean behavioural belief score of 3.44 (SD=3.88) indicated a weak but positive, indirect attitude towards seeking help for chronic pain from a healthcare professional.

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Direct and Indirect Social Pressure to Seek Help

Indirect subjective norm (normative belief) was calculated across the 2 belief subscales i.e., ‘normative expectation’ by the corresponding ‘motivation to comply’. The mean normative belief score of 10.55 (SD=5.92) indicated a moderate, perceived social pressure among the participants to seek help for chronic pain from a healthcare professional.

Direct and Indirect Perceived Behavioral Control (Confidence) in Seeking Help

Indirect perceived behavioral control (control beliefs) was calculated across the 2 subscales i.e. ‘presence of control belief’ by the corresponding ‘power of control belief’

The maximum score observed among the 219 participants who completed these sections, was 6 while the minimum was -12. A mean control belief score of -2.12 (SD=3.46) was observed.

Intention to Seek Help in the next 6 months

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Relationships between variables

Relationship of status variables to Help-seeking Intention

• Pain severity, disability, membership of a support group and attending a pain specialist were significantly associated with help-seeking intentions (p<0.001).

• Contrary to current evidence, age (p=0.149) and gender (p=0.089) were not.

Factors Predicting Help-Seeking Behavior

• Hierarchical regressions revealed that attitudes (p=0.02, β=0.160), subjective norms (p<0.001, β=0.322), perceived behavioral control (p=0.043, β=0.112), past help-seeking experience (p<0.001, β=0.315) and currently attending a pain specialist (p=0.007, β=0.137) were predictors of future help-seeking.

• Pain severity, disability, and membership of a support group did not emerge as significant predictors.

• Total variance explained by the model was 54% and this was significant (p<0.001).

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Explanatory variables indicate that:

1. being encouraged to seek help by a spouse/partner or healthcare professional

2. the desire to find out what can be done to manage pain and

3. being referred to a specialist

make a significantly contribute to help-seeking intentions and enhance understanding of the factors that lead some people to seek help for chronic pain

Help-Seeking Expectations • The most desirable outcomes from seeking professional help were ‘improved quality of life’ (98%, n=240), ‘getting some pain relief’ (98%, n=240) and ‘being listened to and understood’ (98%, n=239).

• Being listened to and understood is high on patients’ list of expectations and ranks higher than issues such as finding a cure or finding out what is wrong

• Verbeek et al. (2004), following a systematic review of studies on patients’ expectations for treatment of chronic pain, concluded that being listened to and understood and having trust in their healthcare professional was linked to patient satisfaction.

• Expectations of pain relief were more prevalent among those with pain over a shorter timeframe.

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Meeting Expectations• If these expectations remain unmet, a process of ‘doctor shopping’, disengagement, and re-engagement may occur, which can lead to poor patient outcomes (Verbeek et al., 2004; Baker et al., 2010; Georgy et al., 2009; 2011).

• Implications for practice, based on these findings, are far reaching

Reasons for not intending to seek help• Participants were asked to comment if they did not intend to seek help for their chronic pain

Why??

• In total, 64 people provided comments/reasons for not intending to seek help from a healthcare professional.

Reasons for not seeking help

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Sample Quotes From Main Themes

Relinquished Hope

• ‘I find them quite useless and - because you go to the appointment they seem to think you can run a marathon. They would need to see you in your own environment to understand how bad simple living is. They are not there at 4am when you are crying in pain. That is why I feel they are of no use.’ (P12)

Unpleasant Past help-seeking encounter • ‘Having suffered chronic pain for

14 years and having seen many healthcare professionals the result is the same-nothing can be done. I find visits to healthcare professionals degrading, time consuming, stressful, unpleasant and ultimately a waste of time.

Sample Quotes From Main Themes

Fear

• ‘I fear not being treated seriously and not being given the help. I also fear a diagnosis and not being given the correct treatment for that.’ (P28).

Financial Barriers

• ‘Going to the Doctor is a luxury I can afford about once a year ….. as for attending consultants or specialists that's a fantasy in my world!’ (P14)

Sample Quotes From Main Themes

Managing and Prioritising

• ‘I have more serious health conditions such as heart

disease’ (P30)

• ‘I have sought help and learned how to manage my pain from a pain clinic’ (P60)

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Implications for Practice • The needs of people with chronic pain include advice on self-

management and referral to specialist services with less emphasis on curing pain and providing prescriptions.

• Only through meaningful communication with patients will expectations be realised and care directed accordingly.

• There is a global movement calling for quality patient care; it appears that this will remain elusive to patients with chronic pain, if they are continually dissatisfied following a healthcare encounter.

• This research has provided information on negative and positive outcomes that people with chronic pain perceive may result following an encounter with a healthcare professional.

• The impact of negative outcomes on patients’ future behavior, attitudes and beliefs needs to be acknowledged and practice changed accordingly.

• Being listened to and understood, and fear of not being believed, emerged as an important aspects to seeking help and something that Hansson et al. (2011) contends are linked to better patient coping.

Implications for Instrument Use

The help-seeking intention scale developed forthis study has the potential to detect those whoare at risk of disengaging and the remaining scalecould help to identify the salient motivators forthis negative behavior; thus the instrument couldbe used in clinical practice during patientinterviews and may direct aspects of care.

Conclusion • While acute pain is the most common motivator for attending a GP, people with chronic pain delay for long periods or present initially but fail to return despite the growing presence of their pain problem

• There is also a cohort of people with chronic pain who over-utilise health services as their needs remain unmet.

• To change and improve help-seeking for chronic pain it is necessary to understand the influencing factors.

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Living with Chronic Pain

Finding Courage to Seek Help

I extend my gratitude to all the individuals with chronic pain who participated in this research. Throughout this study I had the pleasure of communicating with some of you through email, telephone and face-to-face. The resilience shown in spite of great adversity has provided me with inspiration beyond this PhD research.