‘Pain is inevitable, suffering is optional’ Author unknown
Many people with Chronic Pain do not seek help from healthcare professionals; in some cases, they are suffering severe daily pain. Others have sought help initially but failed to return if their pain prescription ran out or treatment was ineffective. There is also a cohort of people who delay seeking help until their pain becomes intolerable. Untreated Chronic Pain can lead to increased disability, increased risk of fall, depression, sleep deprivation, reduced quality of life, social isolation and impact significantly on co-existing diseases. It is therefore pertinent to ask the following questions; why do some people suffer in silence? Why do people fall off the help-seeking path? Why is help-seeking delayed? Although these may be key questions to consider, it would be as prudent to ask what factors influence prompt help-seeking behaviour. The answers to the latter question may provide valuable information on model behaviour which could be adopted by others. Against this background this research aims to develop and deepen understanding of the factors (barrier and facilitators) influencing help-seeking behaviour for the treatment of Chronic Pain.
What is Chronic Pain?
Everyone has experienced physical pain. Humans and animals alike rely on pain signals to tell them that something is wrong or warn of impending danger. As a result, pain can be described as extremely useful. However, when pain no longer serves a useful purpose and extends beyond 3 months it is defined as Chronic Pain, with some experts calling for it to be classified as a disease in its own right and not merely a symptom of a disease.
The prevalence of Chronic Pain is staggering, and it is estimated that 1 in 4 people in Europe are living in and with Chronic Pain. The cause of Chronic Pain can vary from malignancy and degenerative disease to trauma or surgery. However, in a significant proportion of people the reason for its existence remains unknown. Certain types of Chronic Pain emanate from acute pain, and during the transition from acute to chronic, known as the sub-acute phase, opportunities exist to prevent the occurrence of Chronic Pain. However, this involves prompt help-seeking from the patients’ perspective and appropriate pain management from the healthcare professional. Failing this combination of events, the person moves into a phase where pain is chronic. Living with Chronic Pain causes changes to the central nervous system and treatment of such pain is complex and magnified if pain has been endured for a significant period of time. Therefore, the message is clear, early intervention equals better long-term outcomes.
Why do people seek help from a healthcare professional for chronic pain?
There is substantial evidence demonstrating that clinical factors such as pain severity and disability influence help-seeking behaviour. However, during the initial stages of this research, which involved exploring the literature and conducting interviews with 25 people with Chronic Pain, preliminary results identified additional factors. These factors are as follows.
Individuals who believe that pain in later life is normal or something that should be expected are more likely to either delay seeking help or not seek help at all, choosing instead to suffer in silence. The expectation of pain in older age is evident throughout the literature. Most of the qualitative studies on this topic conclude that attributing the cause of pain to aging can account for patient delay in seeking treatment.
Expectations are developed by people prior to engaging in a behaviour, often influencing the person to behave in a participial way. People who believe that a certain behaviour will result in a positive outcome are likely to engage in that behaviour; conversely people with low expectations are less likely to engage. Expectations are shaped from past experience and other social-cognitive factors. Within the context of seeking help for Chronic Pain, poor expectations have been described as a barrier to help-seeking. In other words, individuals may not attend their doctor because they expect no positive outcome and are resigned to the fact that nothing can be done to treat their pain.
It is realistic to assume that if a person thinks they will be stigmatized or negatively labeled as a ‘liar’, a ‘complainer’ or ‘hypochondriac’ when they ask for help; they will avoid asking for help. This is particularly true for people with Chronic Pain if no cause or source of the pain is identified through X-rays or MRI’s. People in this situation begin to doubt the existence of the sensations that they are experiencing and as a result conceal their pain from others, thereby hampering future help-seeking from healthcare professionals. As one person commented during interview;
The word ‘help’ can reflect a state of vulnerability; something which is traditionally not associated with masculinity. Researchers have explored the relationship between men and help-seeking, concluding that masculinity may have a negative impact on seeking help. In other words men do not want to be labeled as ‘weak’ by asking for help particularly for pain conditions. Other work has demonstrated that females are more likely to be vocal about their pain and displayed more help-seeking behaviours than males.
Stoic attitudes such as, ‘I should hide my pain from others’, or ‘I must be courageous in the face of pain’, can seriously impact on the communication of pain to healthcare professionals. Research conducted in nursing homes found that stoic attitudes were the most frequently cited reason for not seeking treatment.
Research conducted to date has found that, if an individual has a negative encounter with a healthcare professional regarding their pain, they are less likely to seek help in the future. Further research has demonstrated that if a negative help-seeking experience occurs initially when the condition is mild, the person is deterred from future help-seeking even if pain worsens. In fact, there is evidence to suggest that people disengage with medical care due to previous negative encounters, resorting to over-the-counter remedies and the use of alternative therapies. One person interviewed for this research stated;
Being motivated towards finding a cure or a treatment that will reduce the pain is described as having a positive effect on help-seeking behaviour. Some people are afraid of not being believed but those who believe in what they are experiencing are more likely to seek help. An interviewee pointed out that it was her instinct and self-belief that got her the help she needed.
While having self-motivation and belief is one thing, the encouragement and support of others has been described as something that often prompts action, particularly if the person is going through a phase of contemplation. Some people in the interviews described the support from others as a factor which enabled them to seek help.
Understanding Chronic Pain and the importance of seeking help during the early stages of the disease can lead to prompt help-seeking. Very often, those who delay are unaware that their pain can be treated successfully. Knowledge of treatment options and the awareness of specialist pain clinics can also influence those who have disengaged to re-enter the treatment cycle.
Progressing this research
The factors presented above together with additional variables have informed the development of a questionnaire which is underpinned by a theory of human behaviour. No instrument of this nature exists; thus, to date, definitive conclusions regarding the relationship between actual help-seeking behaviour and influencing factors have yet to be established. The newly developed questionnaire is currently undergoing pilot testing and review by experts to ensure that the content of the questionnaire is valid. In the coming weeks, the questionnaire will be distributed to a large national sample of people with Chronic Pain. This will allow for the significance and influence of each factor to be measured. Data generated will also demonstrate that the questionnaire is reliable and robust, thus strengthening its potential for subsequent use by other researchers.
The help-seeking process is complex and involves a great amount of self-awareness, support from others, positive attitudes and determination. Treatments for Chronic Pain are improving and healthcare professionals are becoming more knowledgeable about the disease. However, it is essential that we understand the factors influencing a person’s decision to seek help, to prevent people from suffering in silence or falling off the path to recovery; thus, the importance of this research. It is envisaged that the results will provide information on the most salient modifiable variables leading to help-seeking for Chronic Pain. In the future, this research will provide data for the development of a nurse-led intervention to reduce the barriers to help-seeking and enhance the facilitators leading to appropriate treatment.Thanks to my supervisor Professor Geraldine McCarthy and Co-supervisor Josephine Hegarty, School of Nursing and Midwifery, UCC and colleagues for their continued support. I also wish to acknowledge the people who participated in the interviews and future participants of this research for their contribution.