Phenomenological Study on the Lived Experiences of Mothers Caring for Their Pubescent Children with Developmental Disabilities

Purpose@#This phenomenological study explored and revealed the mothers’ lived experiences of caring for pubescent children with developmental disabilities (DDs) in Korea. @*Methods@#Data were collected from semistructured individual in-depth interviews with nine mothers. This study adopted Giorgi's phenomenological analysis, through which a general structure of mothers' caregiving experiences with their pubescent adolescents with DDs was formulated. @*Results@#The lived experiences of mothers caring for pubescent children with DDs were clustered into four themes and nine subthemes from 19 meaning units: (1) not being allowed to take delight in child's growth due to unbalanced growth pace; (2) feeling marginalized along with the disabled child; (3) feeling like being kicked out of society slowly and permanently; and (4) rearrangement of care direction and purpose. @*Conclusions@#This qualitative study captured vivid experiences of mothers who care for pubescent children with DDs by illustrating these mothers’ detailed physical, emotional, and relational difficulties in their caring. Most importantly, this study found that it is puberty that these mothers come to clearly understand that their children and their disabilities are inseparable and change the purpose and direction of childcare. The findings of this study can help health professionals better understand that these mothers are in urgent need for emotional support and need to be included in nursing care. And this study can be used as base data for increasing disability awareness for both healthcare workers and public in general.

Qualitative Study on the Experience of Patients with Meniere Disease

Purpose@#The purpose of this study was to understand and describe the experiences of patients with Meniere disease. @*Methods@#Data were collected from February 19, 2019, to February 5, 2020, through individual in-depth interviews with 13 Meniere patients. Verbatim transcripts were analyzed using Colaizzi’s phenomenological analysis. @*Results@#The experiences of patients with Meniere disease were clustered into the following four themes from 22 meaning units: 1) Complex unfamiliar symptoms that shatter both balance of the body and peace of the heart; 2) A disease that medical treatment and health professionals cannot cure; 3) Suffering hardships that cannot be understood by non-Meniere sufferers; and 4) Making daily efforts to become healthier. Symptoms of Meniere disease are life-shattering and depressing because they are neither visible nor easily curable. Over time, as they accepted the reality of living with the disease, the participants would shift their focus from complete symptomatic cure to leading a healthy and more balanced life. @*Conclusion@#This study shows that Meniere disease has a pervasive impact on all aspects of the patients’ lives. Patients are prone to experiencing restrictions in their social functioning and activities. They also experience psychosocial problems due to the unseen nature of their symptoms. This study elucidates the experiences of Meniere patients and the need for nursing intervention to help improve their quality of life and ability to self-manage. Lastly, this study shows the need for a coordinated interdisciplinary approach to raising public awareness of the disease.

Disease Awareness and Treatment Experience of Patients with Chronic Obstructive Pulmonary Disease / 기본간호학회지

Purpose@#The purpose of this study was to explore patients’ awareness and treatment experiences with Chronic Obstructive Pulmonary Disease (COPD) through in-depth interviews. The objective was to develop data to support patients in the successful management of their illness. @*Methods@#Purposeful sampling was used to collect information- rich cases and participants were recruited at a university hospital in Daegu, South Korea. Data collection was done through face to face in-depth individual interviews with 10 patients with COPD from November 2016 to December 2018. Interview began with open-ended questions and each interview lasted on average one hour. All interviews were audio-taped and transcribed verbatim and transcripts were analyzed using qualitative thematic analysis. The findings were verified by the participants. @*Results@#Four themes emerged from data analysis: ‘Feeling like the disease is not my disease,’ ‘Terminology spills like a flood,’ ‘Negligent daily disease-management with relief,’ and ‘Relying on health professionals and family members hoping for healing’. @*Conclusion@#Participants do not have a clear understanding of their illness nor feel that they are principal agents of their health and illness for treatment and disease management; instead, they depend mainly on their family members and doctors. The findings elucidated the need for increasing patients’ awareness of the illness. Nurses should develop educational support programs to help COPD patients improve their awareness of their illness and successfully manage their treatment.

Future Risks in Patients With Severe Asthma

A major burden of severe asthma is the future risk of adverse health outcomes. Patients with severe asthma are prone to serious exacerbation and deterioration of lung function and may experience side effects of medications such as oral corticosteroids (OCSs). However, such future risk is not easily measurable in daily clinical practice. In particular, currently available tools to measure asthma control and asthma-related quality of life incompletely predict the future risk of medication-related morbidity. This is a significant issue in asthma management. This review summarizes the current evidence of future risk in patients with severe asthma. As future risk is poorly perceived by controlled asthmatics, our review focuses on the risk in patients with ‘controlled’ severe asthma. Of note, it is likely that long-term OCS therapy may not prevent future asthma progression, including lung function decline. In addition, the risk of drug side effects increases even during low-dose OCS therapy. Thus, novel treatments are highly desirable for reducing future risks without any loss of asthma control.

Pregnancy and Childbirth Experiences of Women with Epilepsy: A Phenomenological Approach

PURPOSE: This study sought to understand and describe the pregnancy and childbirth experiences of women with epilepsy (WWE). METHODS: Datawere collected from 2016e2017 through in-depth individual interviews with 12 WWE who experienced childbirth within 36 months. Verbatim transcripts were analyzed following Colaizzi's phenomenological analysis to uncover the meaning of the experiences of the participants. RESULTS: The pregnancy and childbirth experiences of WWE were clustered into four theme clusters and 8 themes from20 meaning units: 1) Feeling anxious due to unplanned pregnancy and unexpected changes; 2) Standing at crossroads that never guarantee satisfaction; 3) Carrying a burden of fearful expectation and daily routines; 4) Enjoying rewards of pregnancy and childbirth as a woman with epilepsy. CONCLUSION: WWE had strong anxiety about the possible abnormality of their babies during pregnancy. They had mixed feelings about delivery and had to make a tough decision about breastfeeding because of antiepileptic drugs use. After childbirth, they had increased fear about the possible inheritance of the illness and had a hard time managing the burden of childcare and seizure control. However, pregnancy allows these women to gain disease awareness and further appreciate the importance of their health. The study results indicate the need for multidisciplinary intervention for WWE, before, during, and after pregnancy to increase communication with health professionals. Especially, preconception counselling and education led by nurses are required.

Illness Experience of Married Korean Women with Epilepsy

PURPOSE: The purpose of this study was to understand and describe the illness experience of married Korean women with epilepsy. METHODS: Data were collected during 2015~2016 through individual in-depth interviews with 12 married women with epilepsy. Verbatim transcripts were analyzed using Giorgi's phenomenological analysis to uncover the meaning of the illness experience of the participants. RESULTS: The study results showed that the illness experience of married Korean women with epilepsy was clustered into a specific description of situated structure and a general description of situated structure. Six themes from 20 meaning units were identified: 1) Undermined self-esteem with stigma of being epileptic; 2) Limited social interaction; 3) Suffering sorrow as a ‘disqualified being’; 4) Shuttling back and forth across the boundary between healthy and epileptic; 5) Desperate struggle to meet the expectation of given role; 6) Self-empowering through self-restriction and realization. CONCLUSION: The findings from this study show that both the enacted and felt stigma of epilepsy impact on the life of married Korean women with epilepsy. Although the participants face social and interpersonal restriction and prejudices, they try their best to fulfill their role rather than to be cared for as patients. As the stigma and hardships of the participants are related to lack of knowledge, health professionals should focus not just on clinical intervention but also on providing targeted educational programs and counseling for these women to dispel the stigma of the disease and to increase their quality of life.

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.

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.