BackgroundPervasive developmental disorder (PDD) has an uncertain etiology, no method of treatment, and results in communication deficiencies and other behavioral problems. As the reported recurrence risk is 5%-10% and there are no methods of either prevention or prenatal testing, mothers of PDD children may face unique challenges when contemplating second pregnancies. The purpose of this study was to explore the mothers' lived experiences of second child-related decision-making after the birth of a child with PDD.MethodsThe participants for this study were restricted to mothers living within the greater Tokyo metropolitan area who had given birth to a first child with PDD within the past 18 years. The ten participants were encouraged to describe their experiences of second-child related decision-making after the birth of a child with PDD on the basis of semi-structured interviews. Data analysis was performed by using Interpretive Phenomenological Analysis (IPA), which is concerned with understanding what the participant thinks or believes about the topic under discussion.ResultsWe identified two superordinate themes. The first was balancing hopes and fears, in which hope was the potential joy to be gained by the birth of a new child without PDD and fears were characterized as uncertainty of PDD and perception of recurrence risk, burden on later-born children, and negative effects on a child with PDD.The second superordinate theme was assessing the manageability of the situation, which was affected by factors as diverse as severity of PDD, relationship between mother and father, and social support and acceptance for PDD. Our 10 participants suffered from extreme psychological conflict, and lack of social support and acceptance for PDD created numerous practical difficulties in having second children.ConclusionsOur participants faced various difficulties when considering second pregnancies after the birth of children with PDD in the Japanese society. As lack of social support and acceptance for PDD also played a large role in second child-related decision-making, creating a social environment that more fully accepts those disabled and providing flexible support systems for families of children with PDD are crucial.
BackgroundThe present study investigated when and how Japanese people with cleft lip and palate (CL/P) learn that their condition is congenital; the perceived effects of withholding the CL/P diagnosis on patients; and whether the resulting social experience and self-esteem are related. A questionnaire survey was conducted in 71 adults with CL/P recruited through a hospital, a patients’ association, and by snowball sampling.ResultsThe participants became aware of their physical difference in childhood, but many reported difficulty in understanding their condition. Participants reported that their families avoided the topic of diagnosis. Participants who understood their condition during childhood rather than in adulthood were significantly more likely to consider this scenario as positive (p < 0.001). Although stigmatising experiences were extremely painful, most patients hid their suffering, making it more difficult to obtain social support. Participants with high self-esteem were more likely to feel that they received adequate support.ConclusionsIt is important to explain the congenital nature of CL/P sufficiently and early. In addition, openness by the family about the diagnosis, rather than avoidance, may improve patients’ self-esteem. Sufficient support from family, health care providers, and significant others is needed for patients to develop adequate self-esteem.
Adolescence is marked by significant life stress. Recently, school refusal and dropouts as well as suicide among Japanese adolescents have increased. Sense of coherence (SOC) is recognized as a competency that helps people deal with stress. The purpose of this study was to examine the factors influencing SOC in male and female high school students. We conducted a survey with 203 pairs of high school students and their mothers, in Tokyo, to explore their SOC, family relationships, school belonging, and autistic traits. Analysis of the data revealed a weak relationship between female students’ SOC and that of their mothers, and no relationship between male students’ SOC and their mothers’ SOC. Feelings of acceptance and recognition from teachers improved students’ SOC, irrespective of gender. Low SOC in mothers had a negative impact on female students’ SOC, and children’s lack of imagination (an autism spectrum tendency) had a negative impact on male students’ SOC. This study revealed the importance of support at home and school according to the needs of both genders.
Aims: The objectives of this study were to understand the experiences of people with cleft lip and cleft palate (CLCP) and to describe the processes and factors leading to the acquisition of high self-esteem. Methods: Semi-structured interviews were conducted of 19 subjects with CLCP recruited via hospitals and through snowball sampling, and the results were analyzed qualitatively, comparing high and low self-esteem groups. Results: Participants with high self-esteem had gone through the phases of "noticing their difference from others", "knowing about and deepening their understanding of CLCP", "no denial of their life with CLCP" and "affirmation of life with CLCP". Seven factor categories including "received sufficient explanation of CLCP condition (from parents) in the early stage", "have not received negative messages about CLCP" and "feeling the presence of someone who accepts their feelings and supports them" were extracted as factors promoting these processes. Conclusions: Knowing about and understanding CLCP enables individuals to acquire a sense of coherence in their lives, which may be related to gaining a feeling of control over their cleft condition, acquiring a sense of autonomy, and finding a meaning for their lives. Thus, medical professionals should provide explanations that enable patients to understand CLCP, and also facilitate interaction between patients with the same condition.
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