Life After Discharge: What Parents of Preterm Infants Say About Their Transition to Home

doi:10.1053/j.nainr.2016.03.002

Newborn and Infant Nursing Reviews

Volume 16, Issue 2, June 2016, Pages 58-65

https://doi.org/10.1053/j.nainr.2016.03.002 Get rights and content

Abstract

Transition from hospital to home for parents of preterm infants (less than 37 weeks gestation) is fraught with challenges. This article presents findings from a descriptive qualitative pilot study and describes experiences of transitioning from hospital to home for parents of preterm infants. An online survey was conducted and parental narratives were analyzed using thematic analysis. The analysis showed tightly interwoven themes: (1) parenting of the preterm infant is challenging; (2) caregiving is physically demanding; (3) having a preterm infant alters the parental role; (4) having a preterm infant can be socially disruptive; and (5) having a preterm infant requires enhanced health care professionals' support. The findings provide evidence for the complexity of transition in this vulnerable population. This phenomenon has been studied for over three decades and yet our knowledge from parental experiences has not led to eradicating many of the difficulties parents face post discharge.

Section snippets

Purpose of the Study

The main purpose of this study was to explore and describe the experiences of preterm infants' parents post-hospital discharge. This study was conducted in 2012 and was a part of a large methodological study (instrument development) during the author's doctoral (PhD) dissertation. The qualitative data from the study described below were used for revisions and modifications of the Transition Questionnaire items26., 27.; the revised instrument was tested in 2014 (data not presented here).

Design

Demographics of the Sample

A total of 52 parents provided full answers to all 11 survey questions. Mothers made up 92.3% of respondents (n = 48). Their mean age was 34.2 (range 20 to 47 years); most mothers were married (71.2%) and had health insurance (93.8%). Nine parents were parents of twins. Participants were from four countries (USA, Canada, Australia, and New Zealand); most respondents were from the USA (18 states, n = 42). Fifty-two percent of respondents had over 17 years of education. Those who answered the question

Discussion

Results of this study are consistent with findings of previous research on transitioning and the parenting of sick and premature infants. Several researchers reported that while parents are looking forward to taking their infant home, they are also anxious and worried about their abilities to provide proper care at home.33., 34., 35. In this study, worries and anxiety were also related to the fear of infant's repeated sickness and the occurrence of breathing problems.³⁵ This study, along with

Conclusion

Findings from this study demonstrate that a preterm infant's transition from hospital to home is multidimensional, complex, and a dynamic phenomenon for parents. Parental stress, worry, and anxiety exist to a large extent when parents take on all of the responsibilities for caregiving of their preterm infant post-hospital discharge. Parenting preterm infants post-discharge creates fatigue and social isolation, and parental confidence in caring for their infant independently is lowered. During

Limitations

Findings from this study should be taken with some degree of caution for several reasons. First, the sample consisted mostly of mothers, so paternal experiences were not completely represented. Second, parents of twins and respondents from various countries, could influence the findings. Third, the post-discharge time had a wide range (from few months to 10 years), thus parental recollections of their experiences could have been affected with time. Fourth, because the study population was that

Implications

This research adds to the evidence support that for parents of preterm infants, transitioning from hospital to home is challenging and might be an influence on health outcomes for infant’s and their families. More research in the area of transitioning from hospital to home for parents of preterm infants is necessary, more specifically in the transition to primary healthcare settings, as this has not been fully explored. Further attention should be given to the support and trust between parents

Acknowledgment

This article describes what parents reported as experiences and challenges of transitioning from hospital to home with a premature infant. Findings from this online qualitative study were used for revisions and modifications of the items from the Transition Questionnaire²⁶; which was subjected to field testing and exploratory factor analysis in 2014.

References (58)

G.J. Escobar et al.
Short-term outcomes of infants born at 35 and 36 weeks gestation: we need to ask more questions
Semin Perinatol
(2006)
M.W. Kuzniewicz et al.
Hospital readmissions and emergency department visits in moderate preterm, late preterm, and early term infants
Clin Perinatol
(2013)
J. Rowe et al.
Discharge and beyond: a longitudinal study comparing stress and coping in parents of preterm infants
J Neonatal Nurs
(2010)
P. Zelkowitz et al.
Persistent maternal anxiety affects the interaction between mothers and their very low birthweight children at 24 months
Early Hum Dev
(2009)
U.H. Graneheim et al.
Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness
Nurse Educ Today
(2004)
K. Kavanaugh et al.
Getting enough: mothers' concerns about breastfeeding a preterm infant after discharge
J Obstet Gynecol Neonatal Nurs
(1995)
R. Flacking et al.
“I wanted to do a good job”: experiences of ‘becoming a mother’ and breastfeeding in mothers of very preterm infants after discharge from a neonatal unit
Soc Sci Med
(2007)
D.H. Brandon et al.
Emotional responses of mothers of late-preterm and term infants
J Obstet Gynecol Neonatal Nurs
(2011)
A. Kersting et al.
Maternal posttraumatic stress response after the birth of a very low-birth-weight infant
J Psychosom Res
(2004)
M. Forcada-Guex et al.
Prematurity, maternal posttraumatic stress and consequences on the mother–infant relationship
Early Hum Dev
(2011)

March of Dimes

Peristats

U.S. Department of Health and Human Services et al.

Child Health USA

M.C. McCormick et al.

Prematurity: an overview and public health implications

Annu Rev Public Health

(2011)

American Academy of Pediatrics et al.

Guidelines for perinatal care

(2012)

G.J. Escobar et al.

Unstudied infants: outcomes of moderately premature infants in the neonatal intensive care unit

Arch Dis Child Fetal Neonatal Ed

(2006)

S. Bakewell-Sachs et al.

Parenting the post-NICU premature infant

J Matern Child Nurs

(2004)

N. Burnham et al.

Parents' perceptions regarding readiness for their infant's discharge from the NICU

Neonatal Netw

(2013)

C. Kenner et al.

Parent transition after discharge from the NICU

Neonatal Netw

(1990)

N.E. Meck et al.

Mothers' perceptions of their NICU experience 1 and 7 months after discharge

J Early Interv

(1995)

K.C. Wade et al.

Pediatric care for preterm infants after NICU discharge: high number of office visits and prescription medications

J Perinatol

(2008)

J. Jubinville et al.

Symptoms of acute stress disorder in mothers of premature infants

Adv Neonatal Care

(2012)

D.S. Lefkowitz et al.

Prevalence and correlates of posttraumatic stress and postpartum depression in parents of infants in the neonatal intensive care unit (NICU)

J Clin Psychol Med Settings

(2010)

D. Meijssen et al.

Maternal psychological distress in the first two years after very preterm birth and early intervention

Early Child Dev Care

(2011)

F.H.P. Padovani et al.

Anxiety, dysphoria, and depression symptoms in mothers of preterm infants

Psychol Rep

(2009)

T.D. Golish et al.

‘Ambiguous loss’: managing the dialectics of grief associated with premature birth

J Soc Pers Relat

(2003)

P.E. Shah et al.

Maternal resolution of grief after preterm birth: implications for infant attachment security

Pediatrics

(2011)

M. Garel et al.

Mothers' psychological distress 1 year after very preterm childbirth: results of the EPIPAGE qualitative study

Child Care Health Dev

(2007)

L. Jones et al.

Appraisal, coping, and social support as predictors of psychological distress and parenting efficacy in parents of premature infants

Child Health Care

(2009)

B.J. Vederhus et al.

Health related quality of life after extremely preterm birth: a matched controlled cohort study

Health Qual Life Outcomes

(2010)

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To compare parental priorities in the care of preterm and full-term newborns in the first two months after hospital discharge and to identify changes in priorities over time.
Parents of 22 full-term and 19 preterm infants were followed for two months after hospital discharge, with three timepoint evaluations of the parental priorities. They reported on infant care demands in a semi-structured interview.
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Family resiliency and family functioning in Non-Hispanic Black and Non-Hispanic White families of preterm infants
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The transition from hospital to home in families of preterm infants is challenging. There are changes in parenting, role alterations and communication that are all components of family functioning (Boykova, 2016). Families require individualized ongoing assessment and guidance to help them develop resiliency, and to modify family roles and functions to meet the needs of their family, as well as their preterm infants (Boykova, 2016; Mundy, 2010; Raines, 2013).
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Using linear mixed modeling, the significant predictors of family functioning for both Non-Hispanic Black and Non-Hispanic White, even after adjusting for education, income and race, were the protective factors “hardiness” (coefficient = −0.021) and “resources” (coefficient = −0.0052). The fixed effects in the model accounted for 48% (Marginal R² = 0.48) of the variance on family functioning and the fixed and random effects accounted for 59% (Conditional R^2, 0.59) of the variance on family functioning. Sixteen percent of the total sample rated their family as dysfunctional.
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Parents of LBW babies have different at-home baby-care needs. These needs include developing the abilities to cope with their parental role, their relationship with their baby, their changing emotions, and managing their personal needs (Boykova, 2016; Hutchinson et al., 2012; Toral-López et al., 2016). Considering the mother's needs during discharge planning increases a mother's readiness and facilitates the baby's transition from hospital to home (Hariati et al., 2020; Rustina et al., 2016).
This study aimed to identify mothers’ needs in discharge planning for low birth weight (LBW) babies.
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Preterm infants, who are assessed as medically stable despite their unresolved physiological needs, may be discharged to home with continued, on-going care. Due to the underrepresentation and paucity of literature on parental experiences in the continuity of care during the transition of complex preterm infants, Aydon et al. (2018), Boykova (2016a), Garfield et al. (2016), Hutchinson et al. (2012), Petty et al. (2018) and Zanello et al. (2015), further exploration was necessary to ensure that care delivery is appropriately unique to meet the individual needs. This study explored and identified three aspects; how parents experienced the transition from NICU to home (and beyond); whether continuity of care practices during this transition process showed consistency across New Zealand NICU's; implementable and potential strategies for continuity of care to ultimately manifest change and ensure optimal health outcomes for complex preterm infants discharged from NICU to home.
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ArticleLife After Discharge: What Parents of Preterm Infants Say About Their Transition to Home

Abstract

Section snippets

Purpose of the Study

Design

Demographics of the Sample

Discussion

Conclusion

Limitations

Implications

Acknowledgment

Semin Perinatol

Clin Perinatol

J Neonatal Nurs

Early Hum Dev

Nurse Educ Today

J Obstet Gynecol Neonatal Nurs

Soc Sci Med

J Obstet Gynecol Neonatal Nurs

J Psychosom Res

Early Hum Dev

Peristats

Child Health USA

Prematurity: an overview and public health implications

Annu Rev Public Health

Guidelines for perinatal care

Unstudied infants: outcomes of moderately premature infants in the neonatal intensive care unit

Arch Dis Child Fetal Neonatal Ed

Parenting the post-NICU premature infant

J Matern Child Nurs

Parents' perceptions regarding readiness for their infant's discharge from the NICU

Neonatal Netw

Parent transition after discharge from the NICU

Neonatal Netw

Mothers' perceptions of their NICU experience 1 and 7 months after discharge

J Early Interv

Pediatric care for preterm infants after NICU discharge: high number of office visits and prescription medications

J Perinatol

Symptoms of acute stress disorder in mothers of premature infants

Adv Neonatal Care

Prevalence and correlates of posttraumatic stress and postpartum depression in parents of infants in the neonatal intensive care unit (NICU)

J Clin Psychol Med Settings

Maternal psychological distress in the first two years after very preterm birth and early intervention

Early Child Dev Care

Anxiety, dysphoria, and depression symptoms in mothers of preterm infants

Psychol Rep

‘Ambiguous loss’: managing the dialectics of grief associated with premature birth

J Soc Pers Relat

Maternal resolution of grief after preterm birth: implications for infant attachment security

Pediatrics

Mothers' psychological distress 1 year after very preterm childbirth: results of the EPIPAGE qualitative study

Child Care Health Dev

Appraisal, coping, and social support as predictors of psychological distress and parenting efficacy in parents of premature infants

Child Health Care

Health related quality of life after extremely preterm birth: a matched controlled cohort study

Health Qual Life Outcomes

Article
Life After Discharge: What Parents of Preterm Infants Say About Their Transition to Home