Being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years: a phenomenological study of parents' experiences.

PURPOSE: The diagnosis of diabetes in pre-school children poses a number of unique challenges related to everyday responsibility, and the continuous need for supervision and caregiving. This may affect both the child's and the parents' perceived burden caused by the condition. The aim of the study was to explore the lived experience of being mothers and fathers of a child with type 1 diabetes aged 1 to 7 years. METHODS: The study is rooted in an interpretive phenomenological methodology as described by van Manen. In-depth interviews were carried out to collect data. FINDINGS: We were able to identify one essential theme across the interviews: Striving to live an ordinary family life, yet feeling and living very differently-with interrelated sub-themes: A life-changing situation, Always on guard, and Struggling to let go. CONCLUSION: Parents described a profoundly changed situation, and they were indeed striving to live like a "normal" family. They were in need of support from health care professionals at the outpatient clinic, not only support and supervision in regard to practical tasks, but also concerning handling a changed life situation and emotional reactions, especially in the first year after diagnosis.

At the edge of vulnerability--lived experience of parents of children with cerebral palsy going through surgery.

This study explored the experiences of parents of children with cerebral palsy undergoing surgery as they describe them from a lived experience perspective. When children undergo surgical procedures, they have to stay at hospital for a long time, which represents a great challenge for the children as well as their parents. We collected data by using open-ended interviews with 12 parents of 9 children and analyzed these data in accordance with Max van Manen's methodological themes. Based on the parents' stories, the essential theme is: At the edge of vulnerability-being parents at hospital to a child with CP undergoing surgery, which consisted of three subthemes: establishing trust, awareness of a child who cannot speak, and sensing bodily reactions. Parents experienced demanding challenges as they entered the hospital, in a situation that meant both familiarity and unfamiliarity. Judgments about how to care for the child relied on what they normally did. Sitting bedside for hours and days, thoughts about the legitimacy of letting their child go through the suffering surgery were tormenting the parents. They felt vulnerable and very much dependent on health care workers' competence and at the same time doubting them in seeing and taking care of their child's specific needs. It was experienced as an ambivalent situation, and even more so for the parents of a child without speech. The findings indicate that establishing trust implies being met at an existential level and a deeply felt need for health care workers that are really engaged in taking care of their child and their parents.

Parents' perspectives of surgery for a child who has cerebral palsy.

INTRODUCTION: This article explores parents' experiences when their child who is disabled with cerebral palsy was going through a surgical procedure. The literature suggests that parents' uncertainty is a consistent concept regarding the families' experiences in postoperative recovery unit. METHODS: A hermeneutic phenomenological in-depth interview was used, and data are analyzed and interpreted to reflect the words and actions of the participants. Parents of nine children with cerebral palsy were interviewed during recovery or after the children had recovered from the surgery. RESULTS: The parents reported feeling vulnerable and helpless in a situation where children cannot express their concerns, and parents were fearful of the consequences of surgery, because they were not familiar with what is going on in the hospital. Extreme tiredness is an unrelenting condition in the experience of these parents, being constantly available for the child but also being strong for the child's sake. DISCUSSION: Parents perceived that health professionals, especially those with limited experience with children with disabilities, did not understand parents or see parents as unique individuals who are linked to their child in a very special way. The importance of being aware of parents' previous experiences and the need to offer both parents and the child emotional support is clear from this study.