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ORIGINAL ARTICLE  
Year : 2017  |  Volume : 10  |  Issue : 5  |  Page : 1238-1242
Lived experienced of patients with sickle cell disease anemia about disease management (a qualitative research)


1 Assistants Professor of Chronic Disease Research Center in Nursing Care-Ahvaz Jundishapour University of Medical Sciences, Ahvaz, Iran
2 PhD Student of Nursing, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran
3 PhD, MScN, BScN, Nursing Department, Faculty of Medical Sciences, Tarbiat Modares University, Tehran, Iran
4 PhD, MScN, BScN of Nursing, Nursing Department, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran

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Date of Web Publication6-Nov-2017
 

   Abstract 


Introduction and Goal: Sickle cell disease (SCD) is a group of disorders, comprising sickle cell anemia and compound heterozygous disorders. It is the most common inherited hematological disease in the world. The objectives of this study were to describe the lived experienced patients with SCD during the evolution of a painful event and their solutions for control and manage it. We hope that with finding and cumulative of these solutions help patient with SCD for the management of their painful event. Materials and Methods: This qualitative study explored the experiences of sickle cell patients in management and control of pain and disease crisis in Iran. In-depth, unstructured individual interviews were conducted to extract the subjects' experiences of sickle cell patients in management and control of pain and disease crisis. Results: Codes extracted from the interviews led to the emergence of fore themes, which include implementation of various strategies to pain relief, awareness of pain intensifying, need to have the full support, awareness of the disease process. Conclusion: It is recommended that the instructions and programs written by nurses, be taught to patients and received feedback, to ensure that these strategies will be used.

Keywords: Disease management, lived experienced, sickle cell disease

How to cite this article:
Elahi N, Tahery N, Ahmadi F, Rostami S. Lived experienced of patients with sickle cell disease anemia about disease management (a qualitative research). Ann Trop Med Public Health 2017;10:1238-42

How to cite this URL:
Elahi N, Tahery N, Ahmadi F, Rostami S. Lived experienced of patients with sickle cell disease anemia about disease management (a qualitative research). Ann Trop Med Public Health [serial online] 2017 [cited 2019 Sep 17];10:1238-42. Available from: http://www.atmph.org/text.asp?2017/10/5/1238/217508



   Introduction Top


Attempts to study the impact of comorbidity are complicated by the lack of consensus about how to define and measure the concept. Three related constructs, such as multi-morbidity, burden of disease, and frailty are often used interchangeably.[1] Chronic diseases, such as renal failure, thalassemia, hemophilia, and sickle cell anemia are in these ranges. Sickle cell disease (SCD) is a group of disorders, comprising sickle cell anemia (Hemoglobin [Hb] - Hb SS) and compound heterozygous disorders (Hb SC, Hb SD, Hb SG, etc.). It originated in Africa and was brought to the Americas primarily by the forced migration of native Africans for slave labor. It is now found throughout all Europe and Asia.[2] The most common inherited hematological disease in the world.[2] It was initially identified in Africa and although, it does not only affect individuals of African origins,[1] the prevalence is higher in Negro population and their descendants.[3] The hallmark of the disease is pain caused by vaso-occlusion, reperfusion injury, and hypoxemia.

[4] This gene in Iran, especially in the Persian Gulf and the Arab, dominated Khuzestan Province.

Is more common,[5] so that after thalassemia prevalence genetic disorder in Khuzestan [6] and among the indigenous people of Khorramshahr in Khuzestan highest emission intensity can be seen. Patients with sickle cell anemia disease (SCD) are the most expensive patients. Children with SCD are at risk for poor health-related quality of life (HRQOL).[7] Children and adolescents with SCD may require hospitalization for acute complications, such as painful episodes, acute chest syndrome, splenic sequestration, infection, stroke, aplastic crisis, and priapism. Common chronic complications of SCD include also pigment gallstones, delayed growth and development, avascular necrosis, pulmonary hypertension, and renal disease. Management of these complications may require hospitalization or treatment at home, in an ambulatory setting, or in the emergency department (ED).[8] Social and economic challenges are common, as well as barriers to accessing quality healthcare.[1],[6] There is thus a need for skilled adult-oriented health-care providers to deliver sickle cell care and a corresponding need to improve understanding of the long-term needs of adults with SCD.[9] SCD carries a huge psychosocial burden impacting on physical, psychological, social, and occupational wellbeing as well as levels of independence. Psychological complications in patients with SCD mainly result from the impact of pain and symptoms on their daily lives and society's attitudes toward them.[10] As a result, the disease may progressively impact on SCD patients' quality of life.[11] HRQOL in children and adolescents with SCD has also been studied, with the majority of these studies reporting lower HRQL when compared to normal controls.[5],[12],[13] Researchers have reported that children and adolescents with high perceived levels of social support have often been found to have fewer adjustment problems.[14] Whereas, complete remission in patients with chronic disease, almost impossible, at this point one of the most important goals of the health-care team, and especially nurses, optimizing the quality of life of chronic disease.[15] One-way to increase the patient's quality of life, awareness of strategies to relieve their pain. Thus, researchers were the experiences of patients in the control and relieve the day with a qualitative study examined. It is hoped that finding and conclusion that symptoms of solutions for pain relief and to share their experience helped them to relieve the pain. Most of the studies have been published for describing overall HRQOL in children and adolescents with SCD, but there is no qualitative research evaluating the experience of patients in management and control of pain and disease crisis and during the evolution of a painful event. The objectives of this study were to describe the lived experienced of patients with SCD during the evolution of a painful event and their solutions for control and manage it. We hope that with finding and cumulative of these solutions help patients with SCD for the management of their painful event.


   Material and Methods Top


To explain the experiences of patients with sickle cell anemia, pain relief strategies, and explore themes related to it, the qualitative approach, content analysis (using arbitrary approach) were used. This qualitative study explored the experiences of sickle cell patients in management and control of pain and disease crisis in Iran. In-depth, unstructured individual interviews were conducted to extract the subjects' experiences of sickle cell patients in management and control of pain and disease crisis. Since the questions were open-ended, the participants could freely express their feelings, thoughts, and ideas. Data collection continued until data saturation. To perform content analysis, every interview was immediately transcribed, and the contents were studied several times to understand the general points.[12] Then, the initial codes (meaning units) were extracted and classified based on their similarities. Finally, the main themes were extracted to illustrate the patients' experiences. Data were obtained from 11 sickle cell patient referred to Abadan School of Medical Science hospitals, using audio-taped open-ended unstructured interviews. Purposive sampling captured. The 11 participants who were approached met the inclusion criteria of (a) having a diagnosis of SCD, (b) at least 6 months after diagnosis (c) 18 years of age or over (d) Have the desire to participate in the study and (e) be able to communicate his experiences in the field of transport. There were no refusals or withdrawals. All people chose to be interviewed on their own. Each interview was between 45-min and 60 long. After visiting the environments under study, with the participation of qualified, talk with them and explain the purpose of research, if they wish, the interview was done. Place and time of the interview to customize contributors include: the hospital, the patient's home or workplace researcher (Ahvaz or Abadan Faculty of Nursing and Midwifery) was selected. After attending the interview location, obtaining the patient's informed consent form first and then establishing an intimate relationship early and gain the trust of participants, the interview began.


   Results Top


In this study, 11 patients with sickle cell anemia, were deep interviewed. Seven patients (64%) were female, three patients (27%) lived in Bushehr, five patients (45%) lived in Abadan and remaining stationary in Khorramshahr. 8 (73%) had social security insurance, and the other people had other insurance companies, 1 (10%) diploma and the rest (90%) education at the elementary level-guidance. The average disease 19/7 ± 3.2 years and the average age of 26/5 ± 12.6 years.

Codes extracted from the interviews led to the emergence of fore themes, which include: implementation of various strategies to pain relief, awareness of pain intensifying, awareness of pain intensifying, need to have the full support, awareness of the disease process [Table 1]. The theme of this study was described this fact that, patients with sickle cell anemia, always trying to relieve, manage, and control their pain and disease and used the various strategies to achieve this result and get the comfort and control of their pain. Five themes of the study had some codes that following will be discussed.
Table 1: Themes and sub-themes emerged from the data analysis (the main themes)

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Implementation of various strategies to pain relief

The participants had different experiences for pain relief and expressed various ways. Considering the importance of pain in these patients, as the most important symptom, functional and simple to use and applicable strategy in different circumstances would be very helpful. These themes include two codes or classes; use nonpharmaceutical and pharmaceutical strategies. Class pharmaceutical strategies application, multi-category was included, which measures, including fluid intake, especially water and natural juices, use relaxation techniques and relaxation and the use of hot water and bathrooms can be cited. Participants no. 2: “When my feet hurts, put them in warm water and salt to be quiet.” Participants no. 1: “If eat natural fruit juice (not artificial juices) such as orange juice, carrot juice, and tea, my Pain was relieved with liquid. Of course, our doctor is here to teach many things to tell us.”

Awareness of pain intensifying

Knowing and understanding the factors that aggravate the pain, as well as a major theme, were extracted. Of course, knowledge of the factors aggravating the pain can be helped patient in controlling the disease. This theme includes two sub-class: Awareness of the beginner of the pain and the of awareness of the pain worsening. Factors such as excitement, stress, anger, being at the crowded and cramps, as the pain beginner, in the patients had experienced by patients.

Participating no. 2: “When I am afraid, or too be nervous, the pain begins. For example, when someone comes from behind to scare me.” On the other hand, factors such as: sleep in the afternoon, menstruation, exercise and sports, wear tight clothing, exposure to cold weather and cold and heat, including pain worsening factors.

Participating no. 5: “I'm afraid to go to the bathroom. If the wind left to my, severe my pain and I have to go the hospital. Winters are thus. Cold air is more pain.”

Need to have the full support

Participants expressed the support from all sides, can be a factor that, helped patients to relieve the pain and ability to control and manage the disease. This theme includes several sub-themes, such as the need to respect and protect the medical team, need to support and attention of parents and caregivers, need to support and attention of wife, need to attention and support of the teacher.

Participation no. 4: “When me spleen surgery, I was unconscious for a few days, in that days my mother behind me all over, and my father because had to care for the children, every day, came to Ahvaz morning and went afternoon. But now she's broken, and could not come over my head, in the hospital and stays at home.”

Awareness of the disease process

Participants expressed that awareness of the disease process can be used as a strategy largely to help them, that they can avoid factors which cause pain, and more usage of pain relieving agents and ultimately your pain manage better.

Participating no. 6: “…It is long past the onset of illness, I've noticed how the painless. What do I do and what not to do.”

Participating no. 1: “Sometimes I'm at home or the home medicine pills I take eat, my pain is reduced. Sometimes, too, take from herbalists, herbal remedies for pain.”


   Discussion Top


Because self-care is an important part of living with chronic disease, it is appropriate that individuals with SCD make every effort to manage pain at home. However, if the crisis evolves, individuals should be encouraged to seek care. The respondents reported that they were told by providers and caregivers to wait by trying to manage their pain at home. It will be important to understand how providers educate young adults with SCD and their family Members about when to seek care. In the case of young adults who may be new to adult care, it is very important to involve family members who are an important part of care seeking decisions. Issues of care seeking should be taught during adolescence and reinforced before the transition from pediatric to adult care.[4] This study explores the experiences of patients with sickle cell anemia in disease management and how to deal with the pain of patients. The first theme of the study showed that patients used from various solutions to relieve their pain. Although almost of them experienced severe pain periods and these solution that used based on individual experience and do not have complete believed to its and don used them overall. Thus seems that if these approaches were teaches in formal units for patients, its better affect them to overwhelm in these bothered crisis. The National Institutes of Health (1995) and the American Pain Society (1999) developed and published guidelines for the care and management of SCD that focus on the prevention and/or minimization of the frequency, severity, and duration of the vaso-occlusive pain episodes of the various sickle cell syndromes. Conservative measures such as adequate hydration and the avoidance of “excessive” physical and mental “stress” in combination with prescribed opioid analgesics to manage acute and chronic pain are the cornerstones of care and instruction given to patients and providers that are used within the outpatient and in-patient hospital settings. Unfortunately, despite the rigorous adherence to these measures of self-care, patients learn at an early age that they have very little if any control over the unpredictable vaso-occlusive pain episodes and complications of SCD that continue throughout their lives.[5] Relaxation techniques and exercises seem to be the most beneficial, although, they were not as commonly used when compared with prayer. In general, women were more likely to use complementary and alternative medicines (CAMs) in this study, which is also consistent with other studies that were conducted.[12] Clinical management of vaso-occlusive crisis (VOC) pain has not significantly changed over the past few decades, and as seen in our study, treatment is primarily focused on the use of opioid analgesics. Although there are several treatment guidelines for VOC pain crisis 8–10, there have been a few studies evaluating the optimal treatment strategies for administering opioid medication.[13] The second theme, understanding the pain aggravating factors given that, aggravating factors of pain in these patients is very diverse, and in some cases are unique, one of the most important ways to manage pain, is aware of these factors and avoid them that some patients knowledge of these factors are well experienced and have expressed avoid them. The next theme, the need to give full support. These patients, in every respect, have expressed support and expertise required to this need in different aspects of their lives. Need the support of parents, need the support of spouse, the need to support teachers, need the support of treatment team. Support can help and encourage and reassure patients to preventing of the stress and anxiety that one of the aggravating factors of pain in these patients. Therefore, it is important that the healthcare team, especially nurses, have direct contact with the patient in the hospital to different linguistic methods, practices and conduct, show their support for them. Support means being on the side of the patient, and the patient feels that he is at his side, that he understands, and if necessary, he can rely on, can help him overcome the illness and pain. Among a group of children with SCD, only 11% met the standards for receiving care in a patient-centered medical home. While over 90% of children had a regular doctor or nurse, they experienced deficiencies in other functions of primary care. More specifically, children with SCD often experienced inadequate comprehensive care, an absence of family-centered care, and poor care coordination. These findings provide new insights on the large body of research documenting unfavorable health-care utilization patterns of children with SCD with respect to emergency care use and in-patient hospitalizations.[16] The next theme was awareness of the disease process. Of course, knowledge of the process onset, and progression and relieving it can be a great help to the patient, to control and manage it. Therefore, some patients in the study, also noted that the experience of awareness of the disease process, they have helped to control and relieve pain. Finally, the last theme obtained in this study was self-medicating. Many patients, in times of pain, for various reasons, are willing to self-treatment and the use of existing and locally drugs. Self-medication and the use of nonprescription drugs, in some cases, help as well, so that the patients of this study, it had experienced. Patient's economic problems, problems arising from going to hospitals and doctors' offices, the reasons that these patients tend to use more medications are on hand. The results show that the majority (91.6%) report frequent use of CAM for pain control. However, only about 23% reported benefits. Several studies have looked at the reasons or benefits for using CAM (29, 30). These studies showed that CAM is perceived as having fewer side effects, being more cost effective, giving a more holistic approach, and treating the “whole person” taking into consideration lifestyle, background, habits, and physical health. Nursing plays an important role in the pain management experience of individuals with SCD. In the ED, nurses triage patients and determine the initial level of care. Since nurses are often the first providers that individuals with SCD come in contact with, the relationship they develop is important in helping to determine satisfaction with the care-seeking experience. It may be important to understand nurses' attitudes toward individuals with SCD to intervene appropriately.[4]


   Conclusion Top


The patients, for disease management and pain control, expressed different experiences, but despite the use of these experiences, it seems, because these experiences are not planned and classic it is not helpful to patients in pain crisis prevention. Therefore, it is recommended, the guidelines, the programs written by nurses, patients should be taught, and their feedback is taken, to ensure that the strategies to be used.

Acknowledgments

This study is a part of the PhD dissertation in nursing and partly funded by a deputy of research of Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran. Hereby, authors would like to thank all of the patients who participated in this study and shared their experiences with us.

Financial support and sponsorship

This study is a part of the PhD dissertation in nursing and partly funded by deputy of research of Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran.

Conflicts of interest

There are no conflicts of interest.



 
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Correspondence Address:
Noorollah Tahery
PhD Student of Nursing, Ahvaz Jundishapur University of Medical Sciences, Ahvaz
Iran
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ATMPH.ATMPH_239_17

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