Occupying ‘in-hospitable’ spaces: Parental/primary-caregiver perceptions of the impact of repeated hospitalisation in children under two years of age

Abstract

The experience of having a child hospitalised is stressful and disrupts families in myriad ways; however, the experiences of parents/caregivers who encounter repeated admissions of a child with acute lower respiratory infections are under-researched. This project aims to explore these experiences, from a qualitative perspective, using the philosophical tenets of reflective lifeworld research. The research included 14 face-to-face interviews with parents, grandparents, or primary caregivers, of children who, whilst under two years of age, were admitted to hospital multiple times with a lower respiratory infection diagnosis. Many of the participants were from Māori or Samoan ethnic backgrounds. The findings of this single site study revealed that these parents/caregivers' experiences were characterised by feelings of powerlessness, offering descriptions of hospitals as harsh and difficult places to reside, they are 'in-hospitable'. The findings suggest that repeated hospitalisations created a cycle of stressful experiences that impacted both familial relationships and interactions with society. This study draws attention to this previously obscured population group, and calls health care practitioners and policy advisors to engage differently over issues involving families in similar positions.

He Tamariki Kokoti Tau: Families of Indigenous Infants Talk about Their Experiences of Preterm Birth and Neonatal Intensive Care

“…In the hospital, parenting roles are disrupted as health practitioners take over the care of infants, and sometimes also mothers. Power imbalances between health practitioners and whānau are systemically entrenched [ 15 , 16 ], with McBride-Henry and colleagues highlighting how inhospitable hospitals can be for parents of frequently hospitalised young children [ 16 ]. Māori whānau in NICUs report isolation, hunger, heightened stress and anxiety for their infants, as they come to terms with the loss of their anticipated birth journey, being parents in the often-alien hospital environment, and juggling external responsibilities, such as work, study, and other children [ 13 , 17 , 18 ].…”

Grado de ansiedad del cuidador primario del niño hospitalizado

“…Además, existen otros factores que pueden influir como la edad el niño, el número de ingresos y la comunicación de los padres con los profesionales sanitarios (21). En relación con la edad, algunos estudios sugieren que el nivel de ansiedad es más elevado si el niño es hospitalizado al nacer o durante los primeros dos años de vida (22,23,24), en contraposición con los resultados del presente estudio donde no se ha confirmado la existencia de diferencias en función al periodo de la infancia donde acontece la hospitalización. A su vez, el tipo de patología que presente el niño también es un elemento importante, ya que el afrontamiento de la hospitalización poder variar según la naturaleza de la enfermedad.…”

“…En este mismo sentido, el número de ingresos también es un factor relevante, existiendo evidencia que muestra que las hospitalizaciones repetidas disminuyen la calidad de vida del cuidador primario y, de acuerdo a los resultados del estudio, incrementan los niveles de ansiedad estado (22,24). No obstante, otros estudios matizan que las hospitalizaciones recurrentes permiten una mayor anticipación a las situaciones estresantes y, por lo tanto, generan confianza (28,29).…”

Respiratory research with Māori and Pacific children living in Aotearoa, New Zealand: a systematic review and narrative synthesis

“…Eleven studies were based in Auckland, with six located explicitly in South Auckland. [27][28][29][30][31][32] Two studies were conducted across multiple regions of New Zealand; the first was co-located across Porirua, Hutt Valley, 33 and the second across Auckland, Bay of Plenty, Wellington, Nelson and Christchurch. 34 Other study locations included Northland, 22,23 the upper North Island, 35 the Bay of Plenty 36 and Dunedin.…”

“…38 Five studies reported multiple ethnicities at the Level two category. 26,29,31,39,40 Out of the 29 studies, 28 involved Māori children/whānau, while 24 focused on Pacific children/families. Two studies explicitly focused on Māori, 36,41 and only one study had a Pacific-only cohort, 26 although one study used the term 'Polynesian' to describe their combination of Māori and Pacific participants.…”