Parental psychosocial outcomes in pediatric liver and/or intestinal transplantation: Pretransplantation and the early postoperative period

Abstract

Although liver transplantation has become an effective treatment for end-stage liver disease and liver/intestine transplantation is becoming an increasingly viable procedure for end-stage shortgut syndrome in children, little is known about the impact of these procedures on the child's family. Examination of the impact of these transplantations on the family is needed to identify psychosocial factors that may adversely affect the child's physical and emotional health and to plan for preventive interventions. The psychosocial impact of pediatric liver and/or intestine transplantation on parents was assessed in a cross-sectional sample of 41 mothers and 20 fathers evaluated pretransplantation and 2 months posttransplantation. Parental mental health, parenting stress, and quality of life were assessed, as well as demographic, child, and family characteristics as they related to parental outcomes. Parent adjustment did not differ with regard to time of assessment. A majority of parents (n ‫؍‬ 31) reported elevated psychological symptoms on the Brief Symptom Inventory (BSI), with fathers showing greater distress than mothers (P F .05). Parents' total scores on the Parenting Stress Index and the Parent and Child Domain subscales were in the normal range. Quality of life was assessed by the Physical Health, General Health Perception, and Vitality subscales of the SF-36. Parents reported better physical functioning (P ‫؍‬ .02) but lower vitality ratings than a normative population (P F .01). Family conflict was associated with higher psychological distress on the BSI (P ‫؍‬ .02), whereas demographic factors, including the child's age, sex, and number of people in the household, proved most useful in predicting parenting stress and quality of life. These findings of significant psychological distress in parents of children undergoing liver and/or small-intestine transplantation have implications for the child's adaptation and underscore the need for psychosocial assessment of both parents in the perioperative period. Early identification of families at psychosocial risk and the development of interventions that may prevent or reduce psychological distress are indicated to ensure the best possible outcomes for these children and their families.

Health-Related Quality of Life after Pediatric Liver Transplantation: A Qualitative Analysis of the Perspectives of Health Care Providers

“…These findings are in keeping with previously reported higher rates of depression, anxiety, and symptoms of posttraumatic stress disorder (PTSD) among parents of children either listed for LT and in parents of children who have undergone LT [22–24]. It is important to note that parental stress has been associated with impaired clinical outcomes after LT, including poor adherence to treatment and poor health outcomes [20].…”

Quality of Life after Pediatric Intestinal Transplantation: The Perception of Pediatric Recipients and Their Parents

“…We also found that patients missed on average 7-9 days of school or work/year for physician visits and hospitalizations. Other studies of QOL in this patient group are limited to a small number of adult recipients and to an assessment of the QOL of the parent (12)(13)(14)(15). No previous studies of QOL of pediatric intestinal transplant recipients using validated instruments were identified in the literature, although children account for a large proportion of intestinal transplant recipients.…”

Short Bowel Syndrome: Parenteral Nutrition Versus Intestinal Transplantation. Where Are We Today?

“…Although parenting stress was not elevated compared with a normative sample, having a younger child going through transplantation was associated with higher stress. Parents reported better physical function but lower vitality than the normative population [173].…”