Parenting a child at home with hypoplastic left heart syndrome: experiences of commitment, of stress, and of love.

OBJECTIVE: To evaluate the experiences of parenting a child with hypoplastic left heart syndrome after the child has been discharged home from hospital. DESIGN: A study of the parents' experiences using face-to-face interviews and psychometric measures with parents whose child had survived stage surgery. SETTING: Parents were interviewed within the home environment or within the hospital if that was their choice. SUBJECTS: A total of 29 parents (16 mothers and 13 fathers) of surviving children. Intervention A semi-structured face-to-face interview plus psychometric tests (parent demographics, Maslach Burnout Inventory, Impact on Family Scale, and the Psychological Check List - Civilian). Measurements and main results The parents' experience in supporting a child with hypoplastic left heart syndrome is one of stress, of commitment, and of love. Although parents experienced joy in their child, they were also subjected to anxiety with four parents test positive to post-traumatic stress disorder and hypervigilance while monitoring their child's condition. Parents lived with many difficulties, and demands.

Psychosocial responses of parents to their infant's diagnosis of hypoplastic left heart syndrome.

OBJECTIVE: To evaluate the psychosocial status of mothers and fathers in response to their infant's diagnosis of hypoplastic left heart syndrome. DESIGN: A study on interviews with parents whose children had survived staged surgery. SETTING: Tertiary hospital paediatric ICU. SUBJECTS: A total of 29 parents (16 mothers and 13 fathers) of surviving children. INTERVENTION: A semi-structured face-to-face interview was conducted to explore experiences of parents in response to their infant's diagnosis, their interaction with the doctor delivering the diagnosis, their deliberation about staged surgery, and their reasons for this choice. MEASUREMENT AND MAIN RESULTS: All parents were devastated about their infant's diagnosis, and most (83%) of them said that the time of the diagnosis and the aftermath was the worst time of their lives. Parents reported helpful and unhelpful communication at this time. Although all parents in this study chose surgery for their infant, when faced with the choice, 17 of them made an immediate decision "to protect their infant's life", 8 were initially unsure when their infant was diagnosed in utero, and 4 were unsure when the infant was diagnosed after birth. Parents also experienced loss and other stressors. CONCLUSIONS: All parents of the infants diagnosed with hypoplastic left heart syndrome experienced intense loss and stressors. Physicians need to be sensitive to the needs and thinking of the parents when discussing treatment options before surgery. The nature of the relationship with the doctor at this time can support parents or be a further source of stress.

Psychosocial experiences of parents of infants with hypoplastic left heart syndrome in the PICU.

OBJECTIVE: To evaluate the psychosocial status of mothers and fathers of infants with hypoplastic left heart syndrome while in the PICU. DESIGN: A retrospective study combining interviews and psychometric testing of parents. SETTING: Tertiary hospital PICU. SUBJECTS: Twenty-nine parents (16 mothers and 13 fathers) of surviving children. INTERVENTION: A semistructured face-to-face interview was conducted to explore parental experiences, and a Structured Clinical Interview for Diagnosis-Clinical Version (posttraumatic stress disorder module) was conducted to determine the possibility of an acute stress disorder or a posttraumatic stress disorder. MEASUREMENT AND MAIN RESULTS: All parents reported multiple stresses which commenced with their infant's diagnosis and endured throughout their infant's time in PICU. The Structured Clinical Interview for Diagnosis revealed that acute stress disorder or posttraumatic stress disorder developed in 24 parents (83%). Of 18 parents whose infants were diagnosed with hypoplastic left heart syndrome in utero, eight of nine mothers (88%) and six of nine fathers (66%) had posttraumatic stress disorder. Of 11 parents whose infants were diagnosed with hypoplastic left heart syndrome postbirth, six of seven mothers had acute stress disorder and one mother had posttraumatic stress disorder, and of four fathers, two fathers had acute stress disorder and one father had posttraumatic stress disorder. The prevalence of parental stress-related disorder was not different between mothers and fathers (p = 0.85). Only five parents were free of traumatic stress-related illness. Parents also experienced losses. Many parents were marginalized from their infant's care by the environment of PICU. Fifty percent of mothers experienced difficulties with parental-infant bonding. Ten parents (34%) began the process of adaptation to their infant's hypoplastic left heart syndrome and were assisted by the support and sensitivity of staff or had discovered other resources. CONCLUSIONS: All parents of surviving infants with hypoplastic left heart syndrome in PICU, irrespective of timing of diagnosis, experienced numerous stresses and losses, and the majority exhibited clinical levels of traumatic stress. Receiving the diagnosis itself is very traumatic and is compounded by the environment of the PICU which alienates parents from their infants and interferes with parent-infant bonding. Parental adaptation to this situation can be assisted by staff.

Place, age, and mode of death of infants and children with hypoplastic left heart syndrome: implications for medical counselling, psychological counselling, and palliative care.

A review of outcomes of hypoplastic left heart syndrome at a pediatric hospital 1983-2004 identified 154 deaths among 206 children (75%). Of 134 surgically treated, 82 (62%) died: 68 (83%) in intensive care, six (7%) in the operating theatre, three (4%) during transport from home, two (2%) on the cardiac ward, one (1%) at home, one (1%) in the emergency department, and one (1%) elsewhere. Seventy died after stage one Norwood surgery (median age: 13 days), three died after second stage surgery (ages: 3, 4, and 20 months), two died after third stage surgery (ages: 1.2 and 3.5 years), two died after heart transplantation (ages: 4.6 and 15 years), and five died after non-Norwood surgery. All 72 infants treated without surgery died: 68 died at a median age 3 days; 57 (79%) in intensive care, three (4%) on the ward, and 12 (17%) elsewhere. Discussion involves strategies to support parents and staff at diagnosis, and before and after a child's death.