Using a longitudinal qualitative approach to understand the lived experiences of caregivers of infants with obstructive sleep apnea who require chronic noninvasive respiratory support

Abstract

AbstractObjectiveAlthough positive airway pressure (PAP) is effective for treating obstructive sleep apnea (OSA) in infants, there is a lack of data on caregivers' experiences administering PAP at home. Understanding caregivers' perspectives may change health care professionals approach to PAP initiation. Our study aimed to gain comprehensive insight into caregivers' beliefs, perceptions, and challenges associated with implementing PAP for infants with OSA, considering the transition from inpatient hospitalization to home.MethodsIn this single‐center prospective longitudinal study, caregivers of infants with OSA less than 12 months old who were initiated PAP during inpatient hospitalization underwent two semi‐structured interviews over 3 months. The interview data were analyzed using directed content analysis, utilizing the health belief and socioecological models as theoretical frameworks. Data were coded and clustered into themes that reflected the evolving perspectives and experiences of caregivers.ResultsEight caregivers completed semi‐structured interviews, revealing three key themes. First, despite initial negative attitudes towards the equipment, caregivers recognized PAP benefits and through self‐efficacy and cues to action, were motivated to use PAP at home. Second, caregivers encountered various barriers to adherence; however, caregivers' self‐efficacy improved with time and practice. Lastly, interpersonal, organizational, and community support enhanced adherence while lack thereof hindered implementation.ConclusionCaregivers of infants with OSA understand the importance of PAP therapy. Providing family‐centered care and targeted interventions helps caregivers maintain adherence to PAP for infants. By understanding the lived experiences of caregivers, health care professionals can better meet the needs of families and optimize the effectiveness of PAP.