Social Work - Theses
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ItemParenting a child with a constant life-threatening condition: the psychosocial experiences of parents whose child has Hypoplastic Left Heart Syndrome( 2012)The study described in this thesis examines the psychosocial experiences of 29 parents, of whom there were thirteen couples and three extra mothers, whose children were born with Hypoplastic Left Heart Syndrome (HLHS) and were subsequently treated with surgery. Although the children of the parents studied are surviving, their lives are constantly threatened. In contrast to the advancing surgical and medical treatment of children with this condition, very little is known about the experiences of their parents. This study, by means of interviews and psychometric testing, explores the psychosocial experiences of parents as they reflected upon the time of their infant’s diagnosis, time in the intensive care unit (PICU), time in the cardiac ward and their time since being at home. All of the parents in this study have a surviving child who had corrective surgery at the Royal Children’s Hospital, Melbourne, Australia. The study utilized an underlying pragmatic paradigm. Mixed methods were chosen because these yield complex data about the parents’ experiences and may generate different or complementary perspectives. The parents’ perceptions were examined at the specified times of their infants’ diagnoses, throughout admission in the paediatric intensive care (PICU), throughout admission in a hospital ward and while at home with their child after discharge from hospital. As well as this narrative data, data was obtained from various psychometric tests. These tests were the SCID, the PCL-C, the IOF, the MBI and the RAHC MOF. Further data was gathered from the child’s medical histories and parents completed an information sheet about their characteristics. Within each time period the parents’ experiences were theorized using concepts of losses, stressors, traumatic stress, adaptation and of the parent-child relational bond. Interviews were semi-structured. Most parents were interviewed separately. The children varied in age, but most were under six, with a small number being teenagers. All children had been discharged home. The present study has a number of unique features: It is an Australian study; it describes the experiences of both fathers and mothers; it considers parental experiences at different phases of their child’s illness and recovery; it describes key psychosocial experiences that were secondary to the child’s condition; it broadens the sample of parents in comparison to other studies; it provides a multi-professional perspective and is the first study of parents’ experiences using mixed methods. Although some of each parent’s experiences were unique, many experiences were common and were complex. Each parent responded to their child’s condition in a way that demonstrated suffering, hope, courage, and a desire to protect their child. The time of their infant’s diagnosis was shattering for parents who described traumatic stress reactions. When their infant was in the PICU parents spoke of intense distress and loss and felt alienated from their infant. Although there were many stressors for parents when their child was in the cardiac ward, the parental-child bond began to normalize and many parents experienced greater authority in their parental role. After their child’s discharge from hospital, parents felt joy but they also felt anxiety in their care-giving role. In the home environment, parents lived with losses and stressors but they also experienced adaptation and the parental-child bond became robust. Adaptation was aided by intrapsychic, interpersonal, and social factors. Communication from health professionals which was clear, compassionate and respectful also assisted parents. Thus many personal factors and attributes intermingle with professional influences to assist the parents of these children who live with a life-threatening condition.