Parental Experiences Caring for Their Hospitalized Medically Fragile Infants: A Description of Grief, Stress, and Coping

Abstract

Background Advances in care have increased survival and improved outcomes of infants with complex and chronic diseases. These medically fragile infants require long-term hospitalization and depend on technology for survival. Parents of these infants experience stress and difficulties adapting to their parental role. Purpose To present an account of parental experiences as they provided care for their hospitalized medically fragile infant. Methods This study was part of a larger constructivist grounded theory study to provide a holistic understanding of the processes of care for medically fragile infants. For this sub-study, 21 parents of hospitalized medically fragile infants were recruited from a pediatric hospital in Western Canada. Parents participated in face-to-face, semi-structured interviews, which were transcribed and analyzed using initial and focused coding. Results Parents of hospitalized medically fragile infants grieved the loss of parenting a healthy infant, and they experienced multiple stressors. Parents utilized various coping strategies to manage their grief and stressors. Some parents were unable to cope, which exacted a heavy toll on their physical and mental health. Parents recommended psychological support, access to physical activity, primary nursing, and health system navigators. Conclusions Parental recommendations can inform the design of interventions for parents of hospitalized medically fragile infants.

Psychological risks to mother–infant bonding during the COVID-19 pandemic

“…[74][75][76][77] There is also some literature on grief related to the loss of parenting a healthy child, including the grief that may be experienced by caregivers with children who have a disability. 78 As well, parents of medically fragile infants who were admitted to the NICU may feel emotionally distant from their infants, 79 as a result of their acute grief response to their child's medical diagnosis. 80 Traumatic birth and non-vaginal births have also been associated with challenges in maternal bonding [81][82][83] that may reflect some avoidance of the infant as they may serve as a reminder of the birth trauma.…”

Experiences of Malawian Mothers During Their Infants' Hospitalization

“…Prenatal and perinatal experiences include past obstetrical complications (infertility, high-risk pregnancies, and childbirth) and past infant losses that might influence the mother's fears in the current pregnancy 15. The third, fourth, and fifth concerns are interrelated and include concerns about the infant's outcome; concerns about the infant's illness, treatment, and appearance; and concerns about loss of parental role resulting from separation after hospitalization 15,18,19. The final area of concern is about healthcare providers.…”

“…15 The third, fourth, and fifth concerns are interrelated and include concerns about the infant's outcome; concerns about the infant's illness, treatment, and appearance; and concerns about loss of parental role resulting from separation after hospitalization. 15,18,19 The final area of concern is about healthcare providers. These concerns include poor communication/ interactions between the mother and the providers and the nonverbal behaviors that positively or negatively impact the mother's stay during the neonatal intensive care unit admission.…”

“…Diane Holditch-Davis and Miles15 (see Figure 1) developed the PPD model to describe 6 potential sources of stress for mothers during the hospitalization of their preterm infants. Preexisting and concurrent personal and family factors include age, gender, ethnicity, socioeconomic status, financial situation, employment, personal traits, family configuration, level of family support, and experiences with illness and death 15,18. Prenatal and perinatal experiences include past obstetrical complications (infertility, high-risk pregnancies, and childbirth) and past infant losses that might influence the mother's fears in the current pregnancy 15.…”

“…These concerns may influence each other and the healthcare workers have the ability to impact these experiences. Evidence from a high-income country has described the hospital environment in relation to care provided, staffing, or patient and provider expectations 18. However, Malawian mothers had to live continuously at the hospital providing care for their infant.…”