Illness Experiences of Adults with Spina Bifida: Protecting the Whole Self

Purpose@#To understand and describe the illness experiences of adults with spina bifida (SB) which is an incurable birth defect and chronic condition that must be managed throughout life. @*Methods@#A qualitative study using grounded theory was adopted. Data were collected through individual interviews with 16 adults with SB between 2016 and 2017 in South Korea. All interviews were audiotaped, and the transcribed data were analyzed using constant comparative analysis. @*Results@#The basic socio-psychological process that underlies the illness experiences of adults with SB was identified as protecting the whole self. This consists of three stages: strict self-concealment, attempting self-disclosure, and balancing between self-concealment and self-disclosure. These stages reveal a process of establishing a firm sense of self by freeing oneself from the shame and stigma of society. Three different patterns of living emerged as a result: living as a non-disabled person, living as a marginal person between non-disabled and disabled, and living as a disabled person. @*Conclusion@#Adults with SB struggle to protect their whole self while managing their chronic conditions by having to constantly balance between self-concealment and self-disclosure. Intervention for adults with SB needs to be based on the stage of sociopsychological maturation. In the early stage, intervention needs to be focused on self-concealment to help establish a firm sense of self. On the other hand, in the later stage when psychological maturity occurs, an intervention that focuses on self-disclosure would be helpful so as not to be isolated from society.

Illness Experiences of Adults with Spina Bifida: Protecting the Whole Self

Purpose@#To understand and describe the illness experiences of adults with spina bifida (SB) which is an incurable birth defect and chronic condition that must be managed throughout life. @*Methods@#A qualitative study using grounded theory was adopted. Data were collected through individual interviews with 16 adults with SB between 2016 and 2017 in South Korea. All interviews were audiotaped, and the transcribed data were analyzed using constant comparative analysis. @*Results@#The basic socio-psychological process that underlies the illness experiences of adults with SB was identified as protecting the whole self. This consists of three stages: strict self-concealment, attempting self-disclosure, and balancing between self-concealment and self-disclosure. These stages reveal a process of establishing a firm sense of self by freeing oneself from the shame and stigma of society. Three different patterns of living emerged as a result: living as a non-disabled person, living as a marginal person between non-disabled and disabled, and living as a disabled person. @*Conclusion@#Adults with SB struggle to protect their whole self while managing their chronic conditions by having to constantly balance between self-concealment and self-disclosure. Intervention for adults with SB needs to be based on the stage of sociopsychological maturation. In the early stage, intervention needs to be focused on self-concealment to help establish a firm sense of self. On the other hand, in the later stage when psychological maturity occurs, an intervention that focuses on self-disclosure would be helpful so as not to be isolated from society.

Quality of Life and its Related Factors in Patients with Benign Prostatic Hyperplasia in One General Hospital / 임상간호연구

PURPOSE: This study was to identify the quality of life and its related factors in patients with benign prostatic hyperplasia. METHODS: A cross-sectional survey design was utilized. Data were collected using questionnaires from 128 patients with benign prostatic hyperplasia who visited an outpatient department at one general hospital in 2016. Data were analyzed using Mann-Whitney U test, Kruskal Wallis test, Pearson's correlation coefficient and hierarchical multiple regression analysis. RESULTS: Mean age of the participant was 67.81±6.94. Mean years since diagnosis was 6.41±5.20. The mean score of quality of life was 0.82±0.09, indicating that QOL was relatively low. Lower urinary tract symptoms (p=.029), anxiety, depression, Activities of daily living were significantly correlated to with quality of life (p<.001). Activities of daily living accounted for 54% (p<.001) of the variance in quality of life as a result of hierarchical multiple regression analysis. CONCLUSION: The results of the study showed that nursing intervention may improve the quality of life of patients with benign prostatic hyperplasia by increasing their Activities of daily living.

A Study on Genetic Knowledge and Anxiety in Patients with Breast Cancer

PURPOSE: The purpose of the study was to understand the levels of knowledge about hereditary breast cancer and anxiety among patients with breast cancer and to identify the relationship between knowledge and anxiety. METHODS: The data were collected from 100 patients with breast cancer in Seoul in 2013. A 15-item hereditary breast cancer knowledge questionnaire and 20-item anxiety state questionnaire were used to measure knowledge and anxiety, respectively. The data were analyzed using descriptive statistics, t-tests, one-way ANOVA, LSD post hoc tests, and Cronbach's α tests in SPSS/WIN 21.0. RESULTS: The mean score of knowledge was 8.34±3.17, indicating 0.56 when converted to 1. Knowledge was different by age, education, marital status, monthly family income, risk for hereditary breast cancer, and needs for genetic counseling. The mean score of anxiety was 46.05±10.53. There was positive correlation between knowledge and anxiety (r=.25, p=.014). CONCLUSION: The results of this study indicate that oncology professionals need to provide genetic knowledge for early detection and prevention of secondary cancer to patients with breast cancer, while considering and relieving their emotional distress, such as anxiety.

Hermeneutic Phenomenological Study on Caring Experience of Nurses Working in a Chemotherapy Ward in Korea

PURPOSE: The purpose of the study was to understand and describe nurses' experiences of caring for cancer patients receiving chemotherapy in chemotherapy wards. METHODS: Data were collected during 2015 by individual in-depth interviews with 10 nurses working in a chemotherapy ward. Transcribed data were analyzed using the hermeneutic phenomenological method by van Manen. RESULTS: Six essential themes emerged from the analysis. ‘Struggle for safe administration of anticancer drugs,' represents the double effort for patients' safety while receiving anti-cancer drugs. ‘Compassion toward patients suffering from chemotherapy,' describes sympathy and empathy for patients and the transference of the pain caused by excessive empathy. ‘Frustration of caring for no further improvement of patients,' describes ambivalence and helplessness due to ineffective chemotherapy. ‘Disappointment of being the target of criticism,' illustrates the emotional injury caused by projection of anger and denigrated value of caring. ‘Motive power of caring: patients, family and colleagues,' represents the supportive relationship for caring. ‘Take-off for better care,' describes development as patients' advocator through introspection and self-management. CONCLUSION: The results of this study indicate that a more supportive ward environment needs to be created to support and empower oncology nurses in order to provide the best care for cancer patients.

Hermeneutic Phenomenological Study on Caring Experience of the Mothers of Children with Epilepsy

PURPOSE: The purpose of this study was to develop a deeper understanding of the experience of mothers caring for children with epilepsy. METHODS: Data were collected through individual in-depth interviews and observation from 12 mothers of children with epilepsy. Data were collected from December, 2014 to February, 2015 and analyzed using van Manen's hermeneutic phenomenological methodology to identify essential themes of their experience. RESULTS: The essential themes that fit into the context of the 4-existential grounds of time, body, other people, and space were: Lived time-ongoing influence of the past, living in insecure present, fearful future with no answer; Lived body-bonded body, burned out state; Lived other-burden but also support, shrunken down; Lived space-narrowed range of activity, widened horizon. CONCLUSION: The findings in this study show in-depth understanding of the hardships of mothers who are caring for children with epilepsy. The beauty and greatness of these mothers are revealed through the analysis of various phenomenological materials such as literary and artistic work reflecting socio-cultural context, as well as vivid care experiences of mothers of children with epilepsy. This will be helpful in increasing understanding of the nature of caregivers' experience for medical professionals dealing with patients and caregivers. Also it helps to improve the understanding of the disease among the general public, followed by a more warming and caring attitude towards patients and family members. Finally, it will enhance psychological well-being and overall quality of life of the epileptic children and their families.

The Lived Experience of Patients with Heart Transplantation: A Phenomenological Study

PURPOSE: The purpose of this study was to describe the lived experience of patients with heart transplantation in Korea. METHODS: Individual indepth interviews and a focus group interview were used to collect the data from nine patients who had heart transplantations in 2015. All interviews were audio-taped and verbatim transcripts were made for the analysis. Data were analyzed using Colaizzi's phenomenological method. RESULTS: Among the nine participants, eight were men. Mean age was 57.30 years. Six theme clusters emerged from the analysis. ‘Joy of rebirth obtained by good luck’ describes the pleasure and expectation of new life after narrow survival. ‘Suffering from adverse drug effects’ illustrates various psychosocial difficulties, such as low self-esteem, helplessness, alienation, and burnout, arising from the side effects of medications. ‘Body and mind of being bewildered’ illustrates disintegrated health and haunting fear of death. ‘Alienation disconnected with society’ describes isolated feeling of existence due to misunderstandings from society. ‘Suffering overcome with gratitude and responsibility’ includes overcoming experience through various social supports and suitable jobs. Finally, ‘acceptance of suffering accompanied with new heart’ illustrate changed perspective of life itself. CONCLUSION: The findings in this study provide deep understanding and insights of the lived experience of heart related illness for these patients and should help in the development of tailored-interventions for patients with heart transplantation.

Cancer Survivorship Care among Oncology Nurses in Korea

PURPOSE: The purpose of this study was to examine the cancer survivorship care practices among oncology nurses in Korea. METHODS: This study was a secondary analysis based on the Korean data from the international service-mapping study for the survivorship care for patients with cancer after treatment completion in the Asia-Pacific Region. The data, collected from 100 Korean nurses who took care of cancer patients, were analyzed using descriptive statistics, t-test, ANOVA, Pearson's correlation analysis, and multiple regression. RESULTS: Statistically significant relationships were found between responsibility and frequency of survivorship care (r=-.20, p=.050), between confidence and frequency of survivorship care (r=.47, p<.001), and between impediments to organization and frequency of survivorship care (r=-.22, p=.027). The frequency of survivorship care was influenced by confidence (β=-.37, p<.001) which explained about 24% of the variance of survivorship care. CONCLUSION: These findings show that development of survivorship care education program for oncology nurses should be considered to increase confidence in survivorship care for oncology nurses.

Hermeneutic Phenomenological Study on Caring Experience of Spouses of Elderly People with Dementia at Home

PURPOSE: This study aimed to understand and describe the caring experiences of spouses of elderly people with dementia. METHODS: The hermeneutic phenomenological method was used and participants were 12 spouses aged 65 and over who were taking care of their husbands or wives with dementia at home. Data were collected from individual in-depth interviews on participants' actual caring experiences. Additionally, novels, movies, and memoirs on elderly couples with partner who had dementia were included as data for the analysis. The qualitative data analysis software program was used to manage and process the collected qualitative data. Data were analyzed using hermeneutic phenomenological analysis based on four fundamental existentials including lived body, lived space, lived time, and lived others. RESULTS: Five essential themes emerged from the analysis: 1) body moving like an old machine, 2) swamp of despair filling with hope, 3) sweet time after bitterness, 4) disappointed elderly couple in the empty nest, and 5) unappreciation vs. empathetic feelings. These essential themes were comprehensively summarized as “the road leading to the maturation of life with dedication and hope while bearing the weight of caring based on the couple's relationship.” CONCLUSION: The findings indicate that the nature of the caring experience of spouses of elderly individuals with dementia is filled with many dynamic and paradoxical dimensions. Thus, results of the study would help with developing interventions tailored specifically for elderly spouse caregivers to support their role adaptation and ultimately improving their quality of life.

Mothers' Perceived Difficulties in the Management of Chronic Conditions of Children with Spina Bifida: A Qualitative Descriptive Approach

PURPOSE: The purpose of the study was to identify and describe the caregiving difficulties that mothers of children with spina bifida experience from their own perspectives. METHODS: A qualitative descriptive study was designed. Data were collected from five mini-focus group interviews and four individual interviews using open-ended questions. Nineteen mothers of children with mild spina bifida participated in the study during 2014-2015. Data were analyzed using qualitative content analysis to identify major difficulties perceived by the mothers. RESULTS: Five domains were identified with 12 subdomains. "Daily routine continence management" describes difficulties arising in bladder and bowel management for the child with spina bifida. "Management of school life of child" deals with difficulties in relation to the school facilities, such as the toilets, as well as teachers and friends. "Relationship with family and neighbors" illustrates problems in relations with their spouse, normal children, relatives and neighbors. "Maintaining physical and psychological health" includes physical and psychological problems of the mothers. "Finance" describes economic burden that the mothers face in the management of child's illness. CONCLUSION: The findings from this study provide insight into the practical issues related to the management of chronic conditions of children with spina bifida from the mothers??perspectives.

The Experience of Illness in Non-Hodgkin Lymphoma Patients

PURPOSE: The purpose of the study was to explore the illness experiences of Korean patients with non-Hodgkin lymphoma. METHODS: Data were collected through individual in-depth interviews with 9 patients. Thematic analysis was used to analyze the data. RESULTS: Five themes emerged as a result of the analysis. "Embarrassment from unfamiliar diagnosis and rapid progression" delineates lymphoma as a very cancer. "Maelstrom in dilemma of cancer treatment" describes suffering due to side effects and complications with lack of information about treatments. "Rearrangement of relationships due to social prejudice" describes interpersonal relationships with others and family members. "Keeping psychological stability through balancing alertness and oblivion" illustrates strategies to overcome the fear of recurrence. "A new life obtained by introspection" delineates the outcome of overcoming cancer through self-reflection. CONCLUSION: Patients with non-Hodgkin lymphoma experienced tremendous physical and psychosocial problems. There are significant knowledge gaps between patients and health professionals. Based on the results of the study, health professionals could develop effective nursing interventions to improve the quality of life of non-Hodgkin lymphoma patients.

Decision Making Experience on Breast Reconstruction for Women with Breast Cancer

PURPOSE: The purpose of this study was to explore decision making experiences of Korean women with breast cancer who underwent breast reconstruction with/after a mastectomy. METHODS: Data were collected during 2015-2016 through individual in-depth interviews with 10 women who had both mastectomy and breast reconstruction, and analyzed using phenomenological method to identify essential themes on experiences of making a decision to have breast reconstruction. RESULTS: Five theme clusters emerged. First, “expected loss of sexuality and discovery of autonomy” illustrates various aims of breast reconstruction. Second, “holding tight to the reputation of doctors amid uncertainty” specifies the importance of a trust relationship with their physician despite a lack of information. Third, “family members to step back in position” describes support or opposition from family members in the decision making process. Fourth, “bewilderment due to the paradox of appearance-oriented views” illustrates paradoxical environment, resulting in confusion and anger. Lastly, “decision to be made quickly with limited time to oneself” describes the crazy whirling process of decision making. CONCLUSION: Findings highlight aims, worries, barriers, and facilitators that women with breast cancer experience when making a decision about breast reconstruction. Deciding on breast reconstruction was not only a burden for women in a state of shock with a diagnosis of breast cancer, but also an opportunity to decide to integrate their body, femininity, and self which might be wounded from a mastectomy. These findings will help oncology professionals provide effective educational counselling before the operation to promote higher satisfaction after the operation.

Factors Influencing Quality of Life in Multiple Myeloma Patients

PURPOSE: The purpose of the study was to investigate the relationships among fatigue, pain, anxiety, depression, and quality of life in Korean patients with multiple myeloma and to identify factors influencing their quality of life. METHODS: The study design was a crosssectional descriptive study. The participants were 92 multiple myeloma patients who visited the outpatient department at a university hospital in Seoul, Korea. The data were collected from January to April in 2013 with self-reporting questionnaires. RESULTS: The mean scores of quality of life in all dimensions were relatively low. Fatigue, pain, anxiety and depression were all correlated to the global heath/quality of life, functional quality of life, and symptom quality of life (p<.001). Fatigue, pain and depression accounted for 65.1% (p<.001) in global health/quality of life and 73.6% (p<.001) in functional quality of life, respectively. And fatigue and pain accounted for 66.4% (p<.001) in symptom quality of life. CONCLUSION: The results of the study showed that fatigue, pain and depression were major predictors of quality of life for patients with multiple myeloma. Therefore, psychological symptoms, such as depression, and physical symptoms should be integrated into the nursing intervention to improve their quality of life.

Distress and Quality of Life in Cancer Patients Receiving Chemotherapy

PURPOSE: The purpose of this study was to identify the levels of distress and quality of life in cancer patients receiving chemotherapy and to identify the relationship between distress and quality of life. METHODS: Data were collected during 2013 from 128 cancer patients receiving chemotherapy at a hospital located in Seoul, South Korea. Distress thermometer and problem list were used to measure distress, and the Functional Assessment Cancer Therapy-general questionnaire was used to measure quality of life. Descriptive statistics, t-tests, one-way ANOVA, the post-hoc Scheffe test, and Pearson's correlation coefficients were used to analyze the data. RESULTS: Among the 128 participants, 68 (53.1%) were male and the mean age was 52.55 years. Forty two (32.8%) were diagnosed with stage 4 and 73 (57.0%) were having recurrence or metastasis. The mean score for distress was 4.01 out of 10. Seventy four (57.8%) participants had a score of 4 or higher, indicating clinically significant distress. Emotional problems had the highest item mean among five domains. The mean score for quality of life was 68.51 +/- 14.22 out of 108. Distress and quality of life were negatively correlated (r= -.52, p<.001). CONCLUSION: Distress level with specific problems should be regularly assessed to relieve distress and improve the quality of life of cancer patients receiving chemotherapy.

Evaluation of an Individualized Education before Discharge and Follow-up Telephone Consultation on Self-efficacy for Kidney Transplant Patients

PURPOSE: This study was to develop and evaluate an individualized education program based on self-efficacy for patients with kidney transplantation in Korea. METHODS: A nonequivalent control group pretest-posttest design was used. The participants consisted of 43 patients who underwent kidney transplants at one hospital in Seoul, from July 2012 to April 2013. The experimental group received an individualized education based on self-efficacy in the hospital and follow-up telephone consultation in the 2nd and 3rd week after discharge. The control group received a routine discharge education. Knowledge, self-efficacy, and compliance related to kidney transplant were measured and analyzed by frequency, average, Mann-Whitney U test, Fisher's exact test, independent t-test, and chi2-test using SPSS Win 20.0. RESULTS: Significant differences were found in self-efficacy between the experimental group and the control group. But no significant differences were found in knowledge and compliance between two groups. The scores of several items on monitoring health status in compliance were higher in the experimental group than those of the control group. CONCLUSION: The results of this study demonstrate the fact that an education program based in self-efficacy for patients with kidney transplant would be effective in improving self-efficacy and the ability to monitor their health status.

Factors Influencing Quality of Life in Thyroid Cancer Patients with Thyroidectomy

PURPOSE: The purpose of the study was to examine the relationships among anxiety, depression, self-esteem, and quality of life in thyroid cancer patients with thyroidectomy and to identify factors influencing their quality of life. METHODS: A cross-sectional survey was conducted to measure anxiety, depression, self-esteem, and quality of life of 129 thyroid cancer patients between 2011 and 2012. The data were analyzed with t-test, one-way ANOVA, post-hoc comparison (Duncan), Pearson's correlation coefficients, and multiple regression analysis. RESULTS: The mean age of the participants was 49.8, and most of them were female and married. The mean time since diagnosis of the participants was two years. The mean score for quality of life was 74 out of 108. Quality of life was significantly different by gender, employment and the stage of cancer at diagnosis. Anxiety, depression and self-esteem were all correlated to quality of life. As a result of stepwise multiple regression analysis, depression, self-esteem, and gender were discovered to account for 58.1% of the variance in quality of life. Depression was the most influential factor. CONCLUSION: The results of the study indicate that depression and self-esteem should be integrated when developing psychosocial intervention to promote quality of life among thyroid cancer patients.

Factors Influencing Empathy in Nursing Students in Korea / 한국간호교육학회지

PURPOSE: The purpose of the study was to explore the levels of self-awareness, assertiveness, life stress, and empathy in nursing students and identify influential factors on empathy. METHODS: A predictive correlational design was used. The data was collected by questionnaires from a convenience sample of 319 nursing students in 2014 in Korea. The data was analyzed using descriptive statistics, t-test, ANOVA, Pearson correlation coefficients, and stepwise multiple regression. RESULTS: The mean items scores of self-awareness, assertiveness, life stress, and empathy were 3.49, 3.02, 2.20 and 3.58, respectively, of a possible score ranging from 1 to 5. Empathy significantly differed by gender, grade, satisfaction with nursing as a major, and clinical practice experience. Empathy was correlated with self-awareness and interpersonal relationship stress. As a result of multiple regression analysis, empathy accounted for 20.1% of the variance by self-awareness, gender, clinical practice experience and interpersonal relationship stress. The most important factor was self-awareness, which explained 11.6% of the variation. CONCLUSION: The results of the study reveal that strengthening self-awareness and relieving interpersonal relationship stress ought to be integrated in developing effective educational intervention for enhancing empathy in nursing students.

Factors Influencing Quality of Life during Chemotherapy for Colorectal Cancer Patients in South Korea

PURPOSE: The purpose of this study was to investigate the levels of physical symptoms, anxiety, depression, and quality of life (QOL) during chemotherapy for colorectal cancer patients in South Korea and to identify factors influencing their QOL. METHODS: Data were collected from 144 colorectal cancer patients receiving chemotherapy during 2012 at one general hospital located in Seoul. Physical symptoms were measured by the M. D. Anderson Symptom Inventory-Gastrointestinal Cancer Module, and anxiety and depression were measured by the Hospital Anxiety Depression Scale. QOL was measured by the Functional Assessment of Cancer Therapy-Colorectal. Data were analyzed using descriptive statistics, t-test, one-way ANOVA, Scheffe post hoc test, Pearson correlation and stepwise multiple regression. RESULTS: Mean age of the participants was 56.6 and most of them were not employed. In terms of cancer stage, 38.2% were in stage 3, followed by stage 4 (34.7%). The most frequent symptom was lack of appetite, followed by sleep disturbance and fatigue. The mean score for anxiety was 5.40 with a prevalence of 23% and that of depression 8.85 with a prevalence of 64.6%. The mean score for quality of life was 81.93 out of 136 and 75.3% of the variance in QOL was explained by depression, symptoms, anxiety, treatment place, and occupational status. Depression was the strongest predictive factor. CONCLUSION: Oncology professionals need to pay special attention to relieving depression as well as physical symptoms to improve QOL during chemotherapy for colorectal cancer patients.

Factors Influencing Quality of Life in Patients with Breast Cancer on Hormone Therapy

PURPOSE: The purpose of the study was to identify degrees of pain, menopause symptoms, and quality of life, and to identify factors influencing quality of life of patients with breast cancer who were on hormone therapy. METHODS: A cross-sectional survey design was utilized. Data were collected using questionnaires from 110 patients with breast cancer who had been on hormone therapy for 3 months or more and were being treated at a university hospital in Seoul. Data were analyzed using chi2-test, t-test, ANOVA, Pearson correlation coefficient and multiple linear regression. RESULTS: Mean age of the participants was 53.56 (SD=6.67) and 54 (51.4%) had stage 0 or I at the time of diagnosis. Most of the participants reported having pain and menopause symptoms (88.2% and 95.5% respectively). The mean score for quality of life was 87.84+/-21.17. Pain, menopause symptoms and quality of life had strong correlations with each other (p<.005). Quality of life was explained by menopause symptoms (beta= -.71), economic status (beta=.20) and occupation (beta=.16). CONCLUSION: The results of the study suggest that menopause symptoms should be incorporated into oncologic nursing care to improve quality of life of patients with breast cancer on hormone therapy.

Structural Equation Modeling on Quality of Life in Older Adults with Osteoarthritis

PURPOSE: The aim of this study was to explore how individual factors, physiologic factors, symptoms, environmental factors, functional status and health perception predict the quality of life (QOL) for older adults with osteoarthritis and to provide guidelines for interventions and strategies to improve QOL in these patients. The conceptual model was based on the Wilson and Cleary's Model. METHODS: Data were analyzed using SPSS WIN 20.0 and AMOS 19.0 program. RESULTS: The proposed model was a good fit for the data based on the model fit indices. Based on the constructed model, individual factors, social support, functional status and health perception were founded to have direct effects on QOL. Symptom had a indirect effect on QOL. Social support had a significant effect on QOL, and this model explained 63.6% of the variance in QOL. CONCLUSION: The results of this study suggest that nursing strategies to increase QOL in this population should contain social support to promote QOL and manage functional limitations and health perception.