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.

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.

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.
Anxiety* ; Breast Neoplasms* ; Breast* ; Education ; Genetic Counseling ; Hereditary Breast and Ovarian Cancer Syndrome ; Humans ; Lysergic Acid Diethylamide ; Marital Status ; Seoul

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.
Emigrants and Immigrants ; Focus Groups ; Heart Transplantation* ; Heart* ; Humans ; Korea ; Life Change Events ; Male ; Methods ; Organ Transplantation ; Pleasure ; Qualitative Research

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.
Beauty ; Burns ; Caregivers ; Child* ; Epilepsy* ; Hermeneutics* ; Humans ; Mothers* ; Qualitative Research ; Quality of Life

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.
Anger ; Drug Therapy* ; Empathy ; Hermeneutics* ; Humans ; Korea* ; Methods ; Qualitative Research ; Self Care

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.
Education ; Humans ; Korea* ; Oncology Nursing ; Professional Practice ; Survival Rate* ; Survivors

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.
Aged* ; Caregivers ; Dementia* ; Family Characteristics ; Hermeneutics* ; Hope ; Humans ; Methods ; Motion Pictures as Topic ; Qualitative Research ; Quality of Life ; Spouses* ; Statistics as Topic ; Wetlands

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.
Activities of Daily Living ; Anxiety ; Cross-Sectional Studies ; Depression ; Diagnosis ; Hospitals, General ; Humans ; Lower Urinary Tract Symptoms ; Nursing ; Outpatients ; Prostatic Hyperplasia ; Quality of Life

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.
Child* ; Friends ; Humans ; Interviews as Topic ; Mothers ; Qualitative Research ; Spinal Dysraphism* ; Spouses ; Urinary Bladder