Some chronic illnesses that result from genetic pre-disposition, auto-immune disorders, and the aging process, also includes pain as a major symptom. These chronic illnesses are known as painful chronic medical illnesses (PCMI). Since the major chief complaint of patients living with PCMI is pain, this symptom is often described as continuous, intermittent, wide-spread, debilitating, unpredictable, and interfering with daily activities. Often this pain cannot be relieved with surgery or other traditional palliative treatments. Persons with PCMI report a variety of problems associated with the pain such as disability, poorer physical and mental health, emotional distress, anxiety, depression, fatigue, decrease quality of life, enability to go to school or work, and sleep disturbances (Rudy, Weiner, Lieber, Slaboda, & Boston, 2007; Wahl, et al., 2009). Furthermore, research shows that chronic pain is a powerful predictor of morbidity and mortality (Rudy, et al., 2007). Moreover, chronic pain conditions affect approximately 100 million US adults at a cost of $560-$635 billion annually in medical expenses and lost productivity (Institute of Medicine, 2012). The PCMIs researched in this study are: sickle cell disease, fibromyalgia syndrome, and chronic low-back pain. Along with the painful physical conditions often experienced by persons with PCMIs many mental/emotional symptoms manifest also. Often the mental/emotional symptoms, also known as psychosocial factors for this study, play a significant role in how the patient self-manage their disease, such as health-seeking behaviors. Health-seeking behaviors, also known as help-seeking behaviors, are described as problem-focused, planned behavior, involving interpersonal interactions within the health care arena (Cornally & McCarthy, 2011). Additionally, the health-seeking behavior concept is an important instrument for exploring and understanding patient’s delay or prompt action for medical assistance across a variety of health conditions (Cornally & McCarthy, 2011).
This research will identify the physical and psychosocial factors people living with PCMIs often encounter daily. In addition, how the physical and psychosocial conditions impact their health-seeking behaviors. It is imperative to understand how persons with PCMI seek health care because when not adequately treated these patients experience high morbidity and mortality rates and increase health care costs due to over usage of hospitals or emergency departments. There are barriers to adequate disease self-management which need to be identified so they can be eliminated.
An extensive review of the current literature using Cumulative Index to Nursing and Allied Health Literature (CINAHL) to identify the typical type of pain often experienced by persons living with sickle cell disease, fibromyalgia syndrome, and chronic low-back pain was conducted. The search terms used for this review included pain, sickle cell disease, fibromyalgia syndrome, and chronic low back pain. Additionally, other search terms used were depression, anxiety, isolation, hostility, stress, health-seeking behaviors, and help-seeking behaviors to identify some psychosocial factors and how these factors impact health-seeking behaviors.
Sickle cell disease: Sickle cell disease, a common inherited genetic disorder that results in a defect in the hemoglobin structure causing a sickle-shaped hemoglobin (Jenerette, Pierre-Louis, Matthie, & Girardeau, 2015). This condition affects approximately 100,000 Americans of African and Hispanic descent (Centers for Disease Control and Prevention, 2016). This defected hemoglobin results in hemolysis, anemia, and other complications that affect every system of the body (Jenerette, et al., 2015). This illness crosses the entire lifespan because patients are born with it. Therefore, the pain experienced is both acute and chronic. When adults experience one of three crises this is considered an acute pain exacerbation. However, chronic pain syndromes describe pain from sickle cell disease complications (Smith, et al., 2008). The first crisis is acute vaso-occlusive, most common type caused by tissue hypoxia, inflammation, and necrosis due to inadequate blood flow to a specific region or organ. The second crisis is aplastic crisis caused by infection from the human parvovirus. The third crisis is sequestration crisis caused by a pooling of the sickled cells in other organs such as the spleen in children and the liver or lungs in adults. Patients often describe pain as abundant, frequent, chronic, and debilitating, burning, stabbing, and being stuck constantly by a sharp knife all over the body.
Fibromyalgia: Fibromyalgia syndrome is a rheumatologic disorder that affects approximately 2% to 4% of the US population, with women more affected (Cranford & King, 2011). This chronic pain condition involves chronic fatigue, generalized muscle aching, stiffness, sleep disturbances, and functional impairment. This syndrome is often accompanied by other rheumatologic conditions such as rheumatoid arthritis, systemic lupus erythematosus, and ankylosing spondylitis. This pain is neurogenic in origin and follows the central nervous systems’ ascending and descending pain pathways resulting in stimulation that normally do not elicit pain, such as touch, to cause pain. Patients often describe the pain as chronic wide-spread, and severe, also along with fatigue, headaches, sleeping problems, and irritable bowel syndrome. Although the etiology is unknown, it is often thought that stress, infection, and trauma can trigger the symptoms.
Chronic low back pain: Chronic low back pain is one of the most disabling chronic pain conditions and the least understood (Rudy, et al., 2007). This condition is described as back pain that persists 12 weeks or longer after an initial injury or underlying cause of acute lower back pain has been treated (NINDS, 2015). Chronic low back pain is often mechanical in nature, mainly associated with spondylosis, a degenerative condition associated with age (NINDS, 2015). Some mechanical causes of chronic low back pain include sprains and strains, herniated or ruptured discs, radiculopathy, sciatica, traumatic injury, spinal stenosis, and skeletal irregularities (NINDS, 2015). The patients often describe continuous pain sometimes radiating down the leg. This condition is sometimes accompanied by sleep disturbances and fatigue.
Psychosocial Impact on Health-seeking behaviors
Sickle cell disease: Many patients with sickle cell disease often express feelings of isolation, exhibit maladaptive coping strategies displayed as anger, aggression, and active avoidance of seeking health care (Booker, Blethyn, Wright, & Greenfield, 2006). Additionally, young adults with sickle cell disease delay seeking care more than older adults, often waiting until the pain intensity is an average 8.7 on a scale of 1 to 10 (Jenerette, Brewer, & Ataga, 2014). Moreover, fear and anxiety prompt these patients to seek care because when the pain reaches a plateau, the patient experiences decreased activity (Jenerette, Brewer, & Ataga, 2014). Moreover, many patients try to treat symptoms at home because of previous negative treatment from healthcare workers. Patients diagnosed or being treated for depression or other mental conditions tend to have more painful episodes resulting in frequent emergency room or hospital usage.
Fibromyalgia: Many patients with fibromyalgia syndrome often experience long-term disability because the fear of pain perpetuates mechanisms such as avoidance of activities, catastrophizing, and hypervigilance which leads to a physical condition known as disuse syndrome (von Koulil, et al., 2008). This condition is considered a disabling condition without objective diagnostic tests, clear-cut treatments, or established etiologies causing further distress for these patients because they are viewed suspiciously and accused of being lazy (McInnis, Matheson, & Anisman, 2014). Fibromyalgia has been thought to result from a stressful period or in response to a traumatic event (McInnis, Matheson, & Anisman, 2014). Furthermore, they often complain of loneliness or isolation because they feel their health care practitioner, friends, and family disregard their complaints (Cranford & King, 2011). Consequently, stress and the unfavorable emotions negatively influence the tendency to seek medical care and appropriately treat symptom flare ups (McInnis, Matheson, & Anisman, 2014). These patients often use escape-avoidance strategies rather than problem-focused coping (McInnis, Matheson, & Anisman, 2014).
Chronic low back pain: Patients with chronic low back pain often demonstrated significantly more disruptions in psychosocial function, more self-reported disability, and decrease physical capacity (Rudy, et al., 2007). This condition is devastating in the elderly population due to progressive physical decline which deeply impacts their psychosocial functioning (Rudy, et al., 2007). Research showed that illness perceptions and patient’s personal thoughts about their symptoms influences their health behavior such as doctor’s visits, medication adherence, and activity limitations (Siemonsma, et al., 2013).
When patients experience frequent chronic, debilitating pain, more likely some psychosocial issues are present. Most patients with PCMIs often describe feelings of depression, isolation, anxiety, stress, and anger and these patients often poorly manage their disease. They may delay seeking medical intervention until the symptoms are unbearable, try home remedies to treat symptoms mainly to avoid interactions with health care workers, or over use health care facilities. More detailed research is needed to determine necessary interventions that may improve or eliminate negative health seeking behaviors.
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