[논문]Parenting experiences among fathers of prematurely-born children with cerebral palsy in South Korea

Park, Jisun; Bang, Kyung-Sook

doi:10.4094/chnr.2021.27.1.75

Parenting experiences among fathers of prematurely-born children with cerebral palsy in South Korea 원문보기

CHNR : Child health nursing research, v.27 no.1, 2021년, pp.75 - 85

Park, Jisun (Seoul National University Hospital) , Bang, Kyung-Sook (College of Nursing, Research Institute of Nursing Science, Seoul National University)

Abstract ▼ AI-Helper

Purpose: The symptoms and impairments caused by cerebral palsy usually require long-term treatment, resulting in a substantial burden on the family of affected children. This study explored the experiences of fathers with prematurely-born children with cerebral palsy, with a focus on how such experiences influenced their families. Methods: A qualitative case study method was used. Nine subjects were recruited from April 2018 to June 2019 at one hospital, and each was interviewed three times by a neonatal nurse. Results: Five core experiences of fathers were identified: "regret for an insufficient initial response", "confronting my child born as a premature baby", "the position of being a dad who can't do anything", "the process of treatment like a tunnel with no exit", and "a father's getting meaning in life through children". These stories covered an individual's timeline and family interactions. Conclusion: Our findings suggest that fathers of prematurely-born children tend to suppress their emotions; therefore, a novel intervention program to encourage fathers' emotional expression and to support healthier interactions with their families is needed. Moreover, our findings could contribute basic information for the construction of a community-based support system to aid families, including prematurely-born children and other persons with impairments.

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표/그림 (2)

표 Table 1. Characteristics of the Participants (N=9)
표 Table 2. Themes and Sub-themes of Parenting Experiences of the Fathers of Prematurely–born Children with Cerebral Palsy

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문제 정의

The purpose of this study was to gain insights into the life experiences of fathers raising children with CP who were born as premature infants, and how this affected the lives of their families. The research questions were 1) "What experiences did fathers of premature babies have during hospitalization and treatment in the NICU?" and 2) "What experiences did fathers have while raising children diagnosed with CP after discharge from the NICU, and what did these experiences mean for family members' lives?"

제안 방법

The first interview was initiated with the following unstructured questions: "Can you tell me about your memories of conceiving a baby or the experience of preparing to conceive a baby with your wife?", "Can you tell me about your experiences related to the birth of your premature baby?", "Tell me about your experiences while your baby was staying and undergoing treatment at the NICU", "What was the treatment and progress while your child was growing up?", "Tell me about major memorable events and circumstances at that time", "What was the health status of your baby at the time of discharge and what physical, psychological and life changes occurred in your family?", "When did you find out that your child had a developmental delay?", and "Tell me the extent of developmental delay of the child, and your experiences during treatment";.
of the original data. For data analysis, the researcher described the experiences of individual participants, performed an intra-case analysis of fathers, and then conducted an inter-case analysis. For intra-case analysis, the fathers' experiences were identified and analyzed by setting the individual subjects participating in the study as cases.
In this study, interviews were conducted using open and semi structured questions in order to increase the reliability of the data. After recording all the interviews, the researcher directly transcribed them within a short time so that there was no omission or distortion of the data.
Second, dependability corresponds to external validity in quantitative research, in this study, data were collected and analyzed until the statements of the study participants selected by the purpose-built expression method appeared repeatedly at the state of saturation, where new content was no longer produced, and the findings were then confirmed with nurses and outpatient coordinators working in the NICU.
First, the participants' experiences of life related to child-rearing were based on the issues that emerged through a series of processes, starting from the birth of a premature infant to the present, when they cared for their children with CP. Second, it was necessary to collect data through various sources such as sufficient in-depth interviews, telephone interviews, field notes, and medical record reviews. In addition, considering the characteristics of the qualitative case study method (intra- case analysis and inter-case analysis), it was judged that the application of the qualitative case study method was appropriate in order to obtain an in-depth understanding of fathers' life experiences related to child-rearing.
The interview times varied from 1 hour and 30 minutes to 3 hours per session depending on the progress of the interview, and the interval between the first and second interviews was 2 to 4 weeks. Subsequently, a 10-minute telephone interview was conducted to confirm the results with the study participants.
In addition to the main interview details, the study participants' moods, thoughts, coping methods, and case solutions and results were recorded. The K-Bayley-Ⅲ score was confirmed through the father's memory and then supplemented through a medical record review. The K-Bayley-Ⅲ score is for infants and toddlers from 16 days to 42 months and 15 days of age, and it consists of a total of five areas: cognitive scale, language scale, motor scale, social-emotional scale and adaptive behavior scale.
The first author specialized in child nursing in graduate school and worked in the NICU for 10 years after graduation, and realized that understanding the families of premature infants is important for providing care. While meeting parents for a long time as a nurse, the researcher realized that child- rens' progress should be monitored not only during the acute phase in the intensive care unit, but also after discharge given their risk of neurodevelopmental disorders and need to assess their symptoms and prognosis.
The interviews with the fathers involved in the study began with recalling the memories of all of their experiences during their wives' pregnancies. In most cases of premature infants admitted to the NICU, there had been high-risk pregnancy and delivery due to problems with the mother or child.
For intra-case analysis, the fathers' experiences were identified and analyzed by setting the individual subjects participating in the study as cases. The researcher intensively analyzed each case while reading the manuscripts repeatedly, and wrote individual memos in order to understand the flow of each case. At the same time, the researcher paid attention to new content that could be discovered when comparing previously examined cases.
Detailed information about the study was provided to the participants, who made inquiries about the study by phone or email, and their voluntary consent was confirmed. The study participants were then given a detailed explanation about the purpose of the study, the process of collecting data, the period of participation in the study, the recording of the interview content, and the storage method and time limit of the study data, and they were reassured that the collected data would not be used for any purpose other than the purpose of the study.
This study used a multi-case study analysis method with qualitative case studies in order to gain insights into the life experiences of fathers raising children with CP born as premature infants, and how those experiences influenced family life. The reasons for using this method were as follows.
This study used the multi-case study analysis method with nine study participants to obtain insights into the life experiences of fathers raising prematurely-born children with CP, and how their family life was affected. Qualitative case study research was conducted.
It was also found that those experiences were not limited to the fathers who participated in this study alone, but could be shared with other fathers who experienced the birth of a premature baby and were raising children with neurological sequelae. With a focus on the main experiences of the nine fathers, what the fathers wanted to say, examples, and the meanings of their experiences were organized into five themes and 14 sub-themes. The names for description in this study are alias (Table 2).
Within a week after the end of each interview, the researcher transcribed the interview content, and it was compared and reviewed repeatedly to prevent omission or misrepresentation of the original data. For data analysis, the researcher described the experiences of individual participants, performed an intra-case analysis of fathers, and then conducted an inter-case analysis.

대상 데이터

Data collection was conducted through two individual in-depth interviews with each participant between April 2018 and June 2019. The location and time of the interviews were chosen by the participant.
However, one out of the 10 fathers who participated in the interview was excluded from the study because he complained of a change in emotions during the first interview and decided to stop the interview. Finally, nine fathers participated in the study. The sociodemographic characteristics of the participants are presented in detail in Table 1.
The participants of this study were fathers who experienced the birth of a premature baby and were raising a child diagnosed with CP, selected during outpatient observation of the child. Purposive sampling was used to select participants who could provide in-depth experiences relating to the research problem.
The study was then specifically explained to the 17 fathers by phone or e-mail, and within a week to a month, 10 fathers consented to participate in the study and made an appointment for an interview. However, one out of the 10 fathers who participated in the interview was excluded from the study because he complained of a change in emotions during the first interview and decided to stop the interview.

이론/모형

In this study, based on the qualitative case study method proposed by Yin [13], data were collected and analyzed simul- taneously. The transcribed content was read repeatedly, and concepts were extracted and categorized to derive themes.

성능/효과

Qualitative case study research was conducted. Through the process of interviews with participating fathers, 'the five main experiences of the meaning of life created through children were "regret for an insufficient initial response", "confronting my child born as a premature baby", "the position of being a dad who can't do anything", "the process of treatment like a tunnel with no exit", and "a father's getting meaning in life through children";.
The results of this study show that there is a need to develop a differentiated intervention program that supports and helps fathers to more actively express their emotions, relieve stress, and have more positive adaptation in the child-raising process. In addition, it can be used as basic data for establishing a support system and counseling center in the community as well as a parenting support program for parents of children with disabilities.

후속연구

In this study, the experiences of fathers of prematurely-born children with cerebral palsy were examined, but it will be helpful to conduct further research among fathers of premature infants with various diseases and disorders. In future studies, it will be necessary to study the experiences of fathers of premature babies, including more diverse ages and diseases. Fathers' interest and participation in child-rearing are increasing, and in a social atmosphere whether this is considered natural, this study targeted fathers of premature infants, who have not yet been studied in Korea, to obtain a deeper understanding of fathers in clinical settings and local communities in the future.
lesion disorders or other causes. In terms of nursing practice, the results of this study are expected to contribute to expanding awareness of the lives of children born prematurely and diagnosed with CP, their fathers, and their fam- ilies, and to help nurses provide the type of nursing care that is actually needed.
experiences according to age was not included. In this study, the experiences of fathers of prematurely-born children with cerebral palsy were examined, but it will be helpful to conduct further research among fathers of premature infants with various diseases and disorders. In future studies, it will be necessary to study the experiences of fathers of premature babies, including more diverse ages and diseases.
The results of this study are not limited to children with CP, but can be extended to the experiences of fathers raising children with developmental delays due to a broader group of brain lesion disorders or other causes. In terms of nursing practice, the results of this study are expected to contribute to expanding awareness of the lives of children born prematurely and diagnosed with CP, their fathers, and their fam- ilies, and to help nurses provide the type of nursing care that is actually needed.

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