Lived experiences of parents of premature babies in the intensive care unit in a private hospital in Johannesburg, South Africa

Steyn, Erika; Poggenpoel, Marie; Myburgh, Chris

doi:10.4102/curationis.v40i1.1698

Cited by 27 publications

(40 citation statements)

References 43 publications

(45 reference statements)

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“…This necessitates the involvement of significant others like parents-in-law and husbands during information and counselling sessions for informed decisionmaking. This is in line with other studies that report on addressing fear, anxiety, anger [26], guilt [27], worry and lived experiences [28] between caregivers and their significant others for informed shared decision-making.…”

Section: Discussionsupporting

confidence: 91%

Health workers’ views on factors affecting caregiver engagement with bubble CPAP

et al. 2020

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Background: Severe respiratory distress is a leading cause of mortality among neonates in Malawi. Despite evidence on the safety, cost effectiveness and efficacy of bubble continuous positive airway pressure (CPAP) in managing the condition, its use in Malawian health facilities is limited and little is known about caregivers' engagement with perspectives of bubble CPAP. The purpose of this study was to explore caregiver perspectives for bubble CPAP at both central and district hospitals and key factors that enable effective caregiver engagement in Malawi. Methods: This was a descriptive qualitative study employing secondary analysis of 46 health care worker in-depth interviews. We interviewed the health workers about their thoughts on caregiver perspectives regarding use of bubble CPAP. We implemented the study at a tertiary facility and three district hospitals in southern Malawi. This was a part of a larger study to understand barriers and facilitators to implementing neonatal innovations in resource-constrained hospitals. Interviews were thematically analysed in NVivo 12 software (QSR International, Melbourne, Australia). Health workers were purposively selected to include nurses, clinicians and district health management involved in the use of bubble CPAP. Results: Emerging issues included caregiver fears around bubble CPAP equipment as potentially harmful to their new-borns and how inadequate information provided to caregivers exacerbated knowledge gaps and was associated with refusal of care. However, good communication between health care providers and caregivers was associated with acceptance of care. Caregivers' decision-making was influenced by relatives and peer advocates were helpful in supporting caregivers and alleviating fears or misconceptions about bubble CPAP. Conclusions: Since caregivers turn to relatives and peers for support, there is need to ensure that both relatives and peers are counselled on bubble CPAP for improved understanding and uptake. Health workers need to provide simplified, accurate, up-to-date information on the intervention as per caregivers' level of understanding. Notably, contextualised comprehensible information will help alleviate caregivers' fear and anxieties about bubble CPAP.

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Section: Discussionsupporting

confidence: 91%

Health workers’ views on factors affecting caregiver engagement with bubble CPAP

et al. 2020

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“…Nurses working in such units need to acknowledge the challenges experienced by mothers and plan effective care to meet the needs of both baby and mother. Provision of timely and comprehensive information to mothers on the condition, treatment and care of their babies (Gaucher & Payot, ; Steyn et al, ) could relieve mothers' anxiety and also promote confidence in the healthcare team (Arzani, Valizadeh, Zamanzadeh, & Mohammadi, ; Williams et al, ).…”

Section: Discussionmentioning

confidence: 99%

“…Several studies (Steyn, Poggenpoel, & Myburgh, ; Taylor, ; Wigert, Johansson, Berg, & Hellstrom, ) described the experiences of mothers with preterm babies in settings where mothers are not accommodated in the hospital premises but can have access to their babies. There is lack of information on the experiences of mothers in a hospital environment that serves as a mother and baby unit (MBU).…”

Section: Introductionmentioning

confidence: 99%

Experiences of mothers with preterm babies at a Mother and Baby Unit of a tertiary hospital: A descriptive phenomenological study

et al. 2019

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AimTo describe the lived experiences of mothers with preterm babies at a Mother and Baby Unit (MBU) of a tertiary hospital.DesignA descriptive phenomenological approach.MethodTen mothers were purposively sampled during the month of May, 2017 to describe their experiences of having preterm babies. Recorded in‐depth individual interviews were transcribed verbatim; codes were generated and inductively organised into themes.ResultsFour themes were actively generated: ‘Emotional experiences of mothers’, ‘Mother‐baby interaction’, ‘Perception on care and support’ and ‘Challenges within Mother and Baby Unit environment’. Mothers were anxious about the premature delivery and were afraid of possible infant's death. They cherished interactions with their babies during kangaroo mother care and breastfeeding. Mothers applauded the nurses for their professional competence. They expressed concerns about inadequate accommodation, high cost of care, the frequency and duration of mother–baby interactions.

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“…Expansion of access to specialized neonatal care units (NCUs) for sick and small newborns is one of the global priorities to reduce neonatal mortality [1]. Despite the tremendous bene ts of NCUs in achieving better neonatal health outcomes, studies exploring experience of parents in NCUs have shown it to be a stressful experience for families [3][4][5][6][7][8].…”

Section: Introductionmentioning

confidence: 99%

“…While there is a large body of literature regarding parental experience in NCUs in western countries, very little is known in Sub-Saharan Africa [9,10]. A small number of studies in South Africa showed that parents often experience negative emotional feelings and various challenges in NCUs [8,11]. Many parents expressed depressive symptoms and inability to bond with their newborns [12][13][14][15][16].…”

Section: Introductionmentioning

confidence: 99%

A Qualitative Study to Explore the Experience of Parents of Newborns Admitted to Neonatal Care Unit in Rural Rwanda

Byiringiro

Wong

Logan

et al. 2020

Preprint

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(310/350 words) Background: Neonatal Care Units (NCUs) provide special care for sick and small newborns and can help reduce neonatal mortality. For parents, the experience of having a hospitalized newborn can be traumatic. In LMIC, especially sub-Saharan Africa, there is limited information about the parents’ experience of care in NCUs. Objective: Our study aimed to explore the experience of parents in the NCU of a rural district hospital in Rwanda. Methods: A qualitative study was conducted with parents whose newborns were hospitalized in the Ruli District Hospital NCU from September 2018 to January 2019. In-depth interviews were conducted using a semi-structured guide in the participants homes by trained data collectors. Data were transcribed, translated, and then coded using a structured code book. All data analyses were conducted using Dedoose software. Results: Twenty-one interviews were conducted primarily with mothers (90.5%, n=19) among newborns who were most often discharged home alive (90.5%, n=19). Parents reported stressful and emotional responses to having their newborns admitted particularly when they lacked clear understanding of their newborn’s condition, generally positive communication and interactions with healthcare providers and other parents, policies and procedures in the NCU that contributed to stress and limited access to newborns by fathers and other family members, and stress due to the high financial burden of NCU care. Conclusion: The admission of a newborn into the NCU alone was a source of stress for parents and caregivers in rural Rwanda. However, there were several positive factors of the NCU including involvement of mothers and support from healthcare providers. The experience in the NCU can be improved when healthcare providers communicate and explain the newborn’s status to the parents and actively involve them in the care of their newborn. Expanding the NCU access for families, encouraging peer support, and ensuring financial accessibility for neonatal care services could contribute to improved experiences for families. KEYWORDS: prematurity, neonatology, family-centered care, neonatal care unit, nurses, patient satisfaction, patient experience

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Lived experiences of parents of premature babies in the intensive care unit in a private hospital in Johannesburg, South Africa

Cited by 27 publications

References 43 publications

Health workers’ views on factors affecting caregiver engagement with bubble CPAP

Health workers’ views on factors affecting caregiver engagement with bubble CPAP

Experiences of mothers with preterm babies at a Mother and Baby Unit of a tertiary hospital: A descriptive phenomenological study

A Qualitative Study to Explore the Experience of Parents of Newborns Admitted to Neonatal Care Unit in Rural Rwanda

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