Abstract
This qualitative pilot study used an interpretative phenomenological design to examine mothers’ reported challenges and supports in performing the co-occupation of caregiving for their preterm infants upon discharge from the NICU. There are several implications for future OT practice, particularly as it relates to supporting maternal facilitation of infant play and sleep occupations and easing the transition from NICU to home during the first few weeks postdischarge.
Primary Author and Speaker: Allison Smith
Additional Authors and Speakers: Megan Karpf, Molly Jow, Morgan Jardon, Tiffany Yu, Brianca Hutchins
Necessary prioritization of the medical needs of preterm infants in the neonatal intensive care unit (NICU) results in a disruption to mothers in assuming their role as a parent and caregiver. Evidence of this disruption is manifested in mothers’ reports of anxiety, depression, stress, and concern with their ability to effectively care for their infants. Currently, there is a paucity of occupational therapy (OT) research on interventions that meet the needs of preterm infants and their mothers upon discharge from the NICU; however, it is necessary to first gain a better understanding of mothers’ experiences with caregiving co-occupations upon discharge from an OT perspective. The purpose of this project is to understand the experiences of mothers in meeting the occupational and developmental needs for their preterm infants upon return home from the NICU by answering the research question: How do mothers of preterm infants experience caregiving co-occupations following discharge from the NICU?
This qualitative study used an interpretative phenomenological design. Inclusion criteria were biological mothers of preterm infants born prior to 35 weeks gestation who received care in a NICU within the last 18 months. The mothers had to be at least 18 years old and be the person, to whom the infant was discharged and who assumed the role of primary caregiver. This research excluded mothers who were homeless, did not speak English, or had a documented drug or alcohol dependency. Participants were recruited using convenience sampling by posting recruitment information on social media.
Data were gathered via semi-structured interviews. The interview guide was informed by the research design and literature review with input from an OT with NICU experience. The 45-minute interviews were conducted in person, over the phone, or via web-based video and were recorded on a digital recording device after informed consent was received. Interviews were transcribed by hand and were read to identify essential elements and codes. Analysis of the codes identified initial themes, and superordinate themes were prioritized across all interviews. The PEO model and the superordinate themes were used to interpret the findings and draw conclusions. To establish trustworthiness in data collection and analysis, the researchers addressed transferability through obtaining rich accounts of descriptive data, dependability through the use of multiple coders, and confirmability by documenting and maintaining all records to create an audit trail.
Four mothers of preterm infants were interviewed. The participants were 24-42 years old, all with at least some college education, three were married, and two were homemakers. Their infants were born at 26-32 weeks of gestation and were 4-18 months at the time of interview. Their NICU lengths of stay were 3-12 weeks. 17 codes were identified from the interview data, resulting in six emergent themes, which were refined to three key themes to answer the research question. These themes were (1) comfort with discrete survival occupations, (2) difficulty navigating transition, and (3) challenges with latent occupations.
In the NICU, there currently exists a poorness of fit between person, environment, and occupation, which results in inhibited performance and engagement for mother-infant dyads in typical co-occupations. This research is important for OT practice in the NICU and early intervention because it provides insight to family and caregiver needs as well as their health care experience particularly as it relates to supporting maternal facilitation of infant play and sleep occupations, ensuring clarity and consistency of information, and easing the transition from NICU to home during the first few weeks post discharge.
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