Parents of preterm born children embody a specific hybridity, shaping both their ‘nature of patienthood’ (Erikainen et al. 2019) and the nature of their participation in the doctor-patient relationship. They are not precisely ‘patients since they are not the object of clinical intervention, and yet they need specific clinical support from health professionals caring for their new-borns Indeed, while doctors and nurses are taking care of their infants’ health, families are being deeply shaped by the complicated interplay of problems and dilemmas associated with personal experiences of the Neonatal Intensive Care (NICU) environment (Mesman 2009; Stacey et al. 2015) Nevertheless, sometimes healthcare staff perceive parents as obstacles, since they often need to act sharply, dealing with urgent and usually invasive medical care activities ParWelB (https://parwelb unimib it/) is an Interdisciplinary and action research project investigating the relationship between preterm birth, parental stress and self-perceived efficacy, in two neonatal intensive and sub-intensive care units in Milan (Italy). We applied a mixed methods approach (adopting close-end questionnaires, narrative in depth-interviews and visual methods) to grasp elements of the organisational culture, as well as forms of participation and interaction among actors. The project aims are: (1) to monitor parental discomfort, which has been observed to be an important long-term risk factor for the child, and (2) to improve collaboration between parents and healthcare staff by applying a ‘desire-based’ methodology rather than a ‘damage based’ one (Gallagher 2018), which means to support the social actors in invisioning best practices rather than merely focusing on what is wrong. This paper focuses on results from interviews and the monthly web-app survey, also considering the impact of peer-to-peer support groups and of the psycho-educational tailored support that were built within the project framework. Specific attention will be paid to parents’ perspectives on their role within neonatal care practices.
Decataldo, A., Russo, C. (2023). Voicing Preterm Parents’ Experiences. Patienthood and Participation in the Neonatal Intensive Care Unit. In Book of Abstracts accepted for presentation at the XX ISA World Congress of Sociology.
Voicing Preterm Parents’ Experiences. Patienthood and Participation in the Neonatal Intensive Care Unit
Decataldo, A;Russo, C
2023
Abstract
Parents of preterm born children embody a specific hybridity, shaping both their ‘nature of patienthood’ (Erikainen et al. 2019) and the nature of their participation in the doctor-patient relationship. They are not precisely ‘patients since they are not the object of clinical intervention, and yet they need specific clinical support from health professionals caring for their new-borns Indeed, while doctors and nurses are taking care of their infants’ health, families are being deeply shaped by the complicated interplay of problems and dilemmas associated with personal experiences of the Neonatal Intensive Care (NICU) environment (Mesman 2009; Stacey et al. 2015) Nevertheless, sometimes healthcare staff perceive parents as obstacles, since they often need to act sharply, dealing with urgent and usually invasive medical care activities ParWelB (https://parwelb unimib it/) is an Interdisciplinary and action research project investigating the relationship between preterm birth, parental stress and self-perceived efficacy, in two neonatal intensive and sub-intensive care units in Milan (Italy). We applied a mixed methods approach (adopting close-end questionnaires, narrative in depth-interviews and visual methods) to grasp elements of the organisational culture, as well as forms of participation and interaction among actors. The project aims are: (1) to monitor parental discomfort, which has been observed to be an important long-term risk factor for the child, and (2) to improve collaboration between parents and healthcare staff by applying a ‘desire-based’ methodology rather than a ‘damage based’ one (Gallagher 2018), which means to support the social actors in invisioning best practices rather than merely focusing on what is wrong. This paper focuses on results from interviews and the monthly web-app survey, also considering the impact of peer-to-peer support groups and of the psycho-educational tailored support that were built within the project framework. Specific attention will be paid to parents’ perspectives on their role within neonatal care practices.
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