Torn between two worlds: parental experiences of neonatal follow-up for infants with hypoxic ischaemic encephalopathy in India-a qualitative study using interpretative phenomenological analysis.

OBJECTIVE: This study aimed to understand the barriers and facilitators of a neonatal follow-up programme, as perceived by parents of infants born with hypoxic ischaemic encephalopathy (HIE). DESIGN: This study applied a qualitative study design using interpretative phenomenological analysis. It included focus group discussions, face-to-face in-depth interviews and telephonic interviews. Data were analysed using thematic content analysis. SETTING: Neonatal follow-up clinic of a tertiary hospital in South India. The study was conducted between March and December 2020. PARTICIPANTS: Five fathers and eight mothers of infants with HIE. RESULTS: Parents of children with HIE are torn between two worlds-an atmosphere of support and one of criticism. Three main themes were identified: (1) neonatal intensive care unit (NICU) stay: distressful versus reassuring experiences; (2) parenthood: supportive versus unsupportive environments; and (3) neonatal follow-up: adherence versus non-adherence. CONCLUSION: Parents of children with HIE experience sociocultural barriers in the NICU, after discharge and during the follow-up period. These lead to a complex array of emotional and physical consequences that affect parenting and follow-up care.

Activity based group therapy reduces maternal anxiety in the Neonatal Intensive Care Unit - a prospective cohort study.

BACKGROUND: A large proportion of mothers in the Neonatal Intensive Care Unit (NICU) experience psychological distress, which is associated with adverse infant and parenting outcomes. Interventions addressing maternal anxiety in the NICU are scarce. AIMS: To assess the effect of activity based group therapy on maternal anxiety in the NICU when compared to a control group. STUDY DESIGN: The study was a prospective phase lag cohort study. In Phase 1 the control group was recruited and assessed using the State-Trait Anxiety Inventory (STAI-S) once at recruitment and again 4 weeks later. In phase 2, mothers were invited to take part in activity-based groups of 1 h duration once a week for 4 weeks. The STAI-S was administered before and after every group session. SUBJECTS: Mothers of babies admitted in the NICU who consented to participate, had a working knowledge of Tamil or English and were likely to stay for 4 weeks for the treatment were included. OUTCOME MEASURES: State anxiety assessed using the STAI-S. RESULTS: Seventeen mothers each in the control and experimental groups completed the study. In the experimental group, there was a significant reduction in the post-test anxiety scores when compared to the pre-test in the first (p = 0.005), third (p = 0.07) and fourth (p = 0.009) sessions. The post-test anxiety scores of the intervention group was significantly lower than that of the control group (p = 0.009). CONCLUSION: Activity based group therapy is effective as an intervention in reducing maternal anxiety in the NICU. SUMMARY: Anxiety in mothers of infants admitted in the NICU has been associated with adverse infant and parenting outcomes. This study evaluated the feasibility and effectiveness of an activity based group intervention to reduce anxiety levels in mothers in the NICU. The study was a prospective phase lag cohort study. Anxiety levels were assessed in mothers in the control group at recruitment and then 4 weeks later. In the intervention group, activity based group sessions were conducted once a week for 4 weeks. State anxiety was assessed before and after every group session. In the intervention group the anxiety levels were significantly lower in the post-test, when compared to the pre-test. Also the number of mothers suffering from moderate to severe anxiety and the anxiety scores in the post-test were significantly lower in the intervention group when compared to the control group. We conclude that activity based group sessions are effective in reducing the state anxiety in mothers in the NICU. Improving maternal psychological wellbeing may indirectly contribute to better infant outcomes.