REVIEW
The lived experience of fathers of preterm infants in the Neonatal Intensive Care Unit: a systematic review of qualitative studies Livio Provenzi and Elena Santoro
Aims and objectives. To systematically review the experience of fathers of preterm infants hospitalised in the Neonatal Intensive Care Unit. Background. Family-centred care is more and more acknowledged in Neonatal Intensive Care Units, advocating for active engagement of both parents in the care journey. Nonetheless, fathers’ Neonatal Intensive Care Unit experience has received limited research attention. Design. Systematic review of qualitative studies. Methods. Four electronic databases (CINHAL, ISI Web of Science, PubMed, Scopus) were explored and studies published between 2000–2014 were included. Preferred Reporting Item for Systematic Reviews and Meta-analysis (PRISMA) and Joanna Briggs Institute (JBI) Critical Appraisal Tool for Qualitative Studies guidelines were adopted. Key themes were extracted and synthesised. Results. Five main themes resuming fathers’ experience of preterm birth and Neonatal Intensive Care Unit stay were identified from 14 studies. Themes were: emotional roller-coaster, paternal needs, coping strategies, self-representation and caregiving engagement. These dimensions were found to be dynamically shaped across three critical turning points: preterm birth, Neonatal Intensive Care Unit stay and at home. Conclusions. Neonatal Intensive Care Unit fathers of preterm infants experience ambivalence, a set of different needs and coping strategies. They modify their self-representations along the Neonatal Intensive Care Unit journey and needs specific nursing support and intervention to sustain caregiving engagement and transition to parenthood. Relevance to clinical practice. A systematic and deepened understanding of preterms’ fathers lived experience in Neonatal Intensive Care Unit would be helpful to inform nursing practice. Specific action priorities are suggested within the frame of family-centred care.
What does this paper contribute to the wider global clinical community?
• Family-centred NICU care for
•
•
preterm infants advocates the active engagement of both mothers and fathers, but data about paternal NICU experience has not been systemised. Five core themes targeting emotional, cognitive and behavioural dimensions of paternal lived experience in NICU emerged from a systematic review of 14 qualitative studies. Insights for clinical practice are discussed with priority actions for NICU nurses to actively engage fathers in family-centred NICU interventions.
Key words: Fathers, Neonatal Intensive Care Unit, parental experience, preterm infants, PRISMA, qualitative research, systematic review Accepted for publication: 25 February 2015
Authors: Livio Provenzi, Developmental and Clinical Psychologist, PhD candidate, 0-3 Center for the Study of Social Emotional Development of the at-Risk Infant, Scientific Institute, IRCCS Eugenio Medea, Bosisio Parini, LC; Elena Santoro, Developmental Psychologist, PhD candidate, CRIdee, Department of Psychology, Universita Cattolica del Sacro Cuore, Milano, Italy
1784
Correspondence: Livio Provenzi, 0-3 Center for the Study of Social Emotional Development of at Risk Infant, Scientific Institute, IRCCS Eugenio Medea, via don Luigi Monza 20, 23842 Bosisio Parini, LC, Italy. Telephone: +39031877464. E-mail: [email protected]
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1784–1794, doi: 10.1111/jocn.12828
Review
Introduction During the last decades, with increasing advances in health care practices and technologies, the survival rate of preterm infants has rapidly increased (Blencowe et al. 2013), dramatically contributing to the health costs in North American states (Johnston et al. 2014). Even in absence of clinical risk and injuries for the newborn, the hospitalisation of a preterm newborn in the highly medical Neonatal Intensive Care Unit (NICU) is a challenging and distressful experience for the parents. As a consequence, neonatal health care systems have shifted their goals towards a paradigm of quality of care, focusing on ways to promote wellbeing in a family-centred fashion and sustaining parental involvement since from infant birth (Lester et al. 2011, Montirosso et al. 2012a). Family-centred care in NICU involves the active engagement of both parents in the routine practice of daily care for preterm infants (Montirosso et al. 2012a, Skene et al. 2012). It has been found to exert beneficial effects, decreasing length of stay (Jotzo & Poets 2005), improving parental well-being (Melnyk et al. 2006) and fostering better neurobehavioural profile for the infant (Montirosso et al. 2012b). Mothers and fathers experiences differ in relation to delivery and NICU hospitalisation of their preterm infant (Matricardi et al. 2013). Notwithstanding, self-report measures of paternal and maternal distress during the NICU stay have led to controversial results: in the UK, mothers reported higher stress than fathers, especially for stressors related to NICU environment, whereas no significant differences emerged for North American samples (Franck et al. 2005). Nonetheless, the great majority of studies have mainly focused on mothers, with fathers being left on the bench. Emblematically, unless one looks closely to the sample description, the use of the word ‘parents’ in the title of most of the papers available in literature does not ensure that fathers were actually represented (Pohlman 2005). Despite Obeidat et al. (2009) recently published a systematic review (SR) on parental experience in NICU, they suggest that there is still an urge need to identify specific qualifiers of fathers’ experience, as they might differ from maternal ones. Moreover, it should be noted that the active engagement of fathers in NICU family-centred practices might be restricted by organisational, cultural and interpersonal barriers (Feeley et al. 2013a). In the light of the potentially different pathways of response to preterm birth among mothers and fathers, these considerations could lead to a critical bias in NICU parents’ literature, with limited information about the specific experience of preterm infants’ fathers during the NICU stay and the risk of © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1784–1794
Fathers of preterm infants in the NICU
misleading neonatal care actions within a family-centred care philosophy. From this point of view, understanding paternal NICU experience in terms of emotions, feelings, fears, needs and representations is crucial for nurses and physicians to be efficiently able to actively engage fathers in the routine care of prematurely born infants. To this extent, quantitative studies were excluded from the present SR as they could not provide in-depth accounts of paternal lived experience. Moreover, qualitative studies have become a milestone in health care research as ways of developing nursing effective interventions in different areas of medical health care (Graffigna et al. 2014).
Aims and methods In the present paper, we report a SR of qualitative studies on fathers’ experience of preterm delivery and NICU stay, as an established method to integrate existing literature on a topic related to health care research and practice (Hoga et al. 2014, P€ olkki et al. 2014). The general purpose was to provide an in-depth comprehension of the unique and specific response pathways of fathers to the experience of having a preterm baby hospitalised in the NICU. More precisely, authors were interested in: (1) providing an integrated view of the main themes that characterise paternal experience of preterm birth and NICU stay; (2) offering an appreciable point of view on the dynamic changes of the emerging themes as they modify across the clinical NICU journey.
Search strategy The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines (Moher et al. 2011) was adopted for the purposes of the present SR. A computer-based literature search was conducted on studies published between 2000–2014 on the following databases: PubMed, CINAHL, ISI Web of Science and SCOPUS. Title/ abstract search string was: ‘Neonatal Intensive Care Unit AND (parents AND/OR fathers)’. To be more comprehensive in the first step of the PRISMA procedure, we opted to include in the search string both parents and/or fathers, given that several studies focusing on both mothers and fathers simply refer to parents in title and abstract. For the same purpose, any referral to preterm/premature infants or preterm/premature birth/delivery was avoided, as research on parental NICU experience might include in the same sample parents of preterm infants and of infants hospitalised for other reasons, so that specific referral to preterm
1785
L Provenzi and E Santoro
birth might not be found in title and abstract of these papers.
PRISMA procedural steps PRISMA procedural steps adopted are reported in Fig. 1, together with records count, duplicates, step-by-step criteria-guided screening and records obtained after each screening. Methodology of papers included embraced – but was not limited to – grounded theory, ethnography and phenome-
nology. Records were considered eligible if papers were published on peer-reviewed, indexed scientific journals. No previous reviews were found and included. Fourteen studies were finally included and resuming information are provided in Table 1.
Assessment of methodological appraisal Quality appraisal was made through the Joanna Briggs Institute (JBI) Critical Appraisal Tool for Qualitative Studies (Porritt et al. 2014). Both authors contributed
Figure 1 Systematic review flow chart.
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© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1784–1794
2001
Koppel and Kaiser (Germany) Pohlman (USA)
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1784–1794
2008
2008
Arockiasamy et al. (Canada)
Fegran et al. (Norway) Fegran et al. (Norway)
2012
2012
2013
2013
Heidari et al. (Iran)
Skene et al. (UK)
Arnold et al. (UK)
Feeley et al. (Canada)
2009
2007
Lindberg et al. (Sweden)
2005
Year
Authors (Country)
Semi-structured interview
Semi-structured interview
Focused ethnography
Semi-structured interview
and observations
Semi-structured interview Semi-structured interview
Semi-structured interview
Narrative interview
Semi-structured interview Semi-structured interview
Qualitative methods
Not specified
Excluded
Mean GA = 28 (SD = 29) weeks Mean BW = 1172 (SD = 4845) g 18 fathers
32 mothers and 7 fathers
GA
The lived experience of fathers of preterm infants in the Neonatal Intensive Care Unit: a systematic review of qualitative studies Livio Provenzi and Elena Santoro
Aims and objectives. To systematically review the experience of fathers of preterm infants hospitalised in the Neonatal Intensive Care Unit. Background. Family-centred care is more and more acknowledged in Neonatal Intensive Care Units, advocating for active engagement of both parents in the care journey. Nonetheless, fathers’ Neonatal Intensive Care Unit experience has received limited research attention. Design. Systematic review of qualitative studies. Methods. Four electronic databases (CINHAL, ISI Web of Science, PubMed, Scopus) were explored and studies published between 2000–2014 were included. Preferred Reporting Item for Systematic Reviews and Meta-analysis (PRISMA) and Joanna Briggs Institute (JBI) Critical Appraisal Tool for Qualitative Studies guidelines were adopted. Key themes were extracted and synthesised. Results. Five main themes resuming fathers’ experience of preterm birth and Neonatal Intensive Care Unit stay were identified from 14 studies. Themes were: emotional roller-coaster, paternal needs, coping strategies, self-representation and caregiving engagement. These dimensions were found to be dynamically shaped across three critical turning points: preterm birth, Neonatal Intensive Care Unit stay and at home. Conclusions. Neonatal Intensive Care Unit fathers of preterm infants experience ambivalence, a set of different needs and coping strategies. They modify their self-representations along the Neonatal Intensive Care Unit journey and needs specific nursing support and intervention to sustain caregiving engagement and transition to parenthood. Relevance to clinical practice. A systematic and deepened understanding of preterms’ fathers lived experience in Neonatal Intensive Care Unit would be helpful to inform nursing practice. Specific action priorities are suggested within the frame of family-centred care.
What does this paper contribute to the wider global clinical community?
• Family-centred NICU care for
•
•
preterm infants advocates the active engagement of both mothers and fathers, but data about paternal NICU experience has not been systemised. Five core themes targeting emotional, cognitive and behavioural dimensions of paternal lived experience in NICU emerged from a systematic review of 14 qualitative studies. Insights for clinical practice are discussed with priority actions for NICU nurses to actively engage fathers in family-centred NICU interventions.
Key words: Fathers, Neonatal Intensive Care Unit, parental experience, preterm infants, PRISMA, qualitative research, systematic review Accepted for publication: 25 February 2015
Authors: Livio Provenzi, Developmental and Clinical Psychologist, PhD candidate, 0-3 Center for the Study of Social Emotional Development of the at-Risk Infant, Scientific Institute, IRCCS Eugenio Medea, Bosisio Parini, LC; Elena Santoro, Developmental Psychologist, PhD candidate, CRIdee, Department of Psychology, Universita Cattolica del Sacro Cuore, Milano, Italy
1784
Correspondence: Livio Provenzi, 0-3 Center for the Study of Social Emotional Development of at Risk Infant, Scientific Institute, IRCCS Eugenio Medea, via don Luigi Monza 20, 23842 Bosisio Parini, LC, Italy. Telephone: +39031877464. E-mail: [email protected]
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1784–1794, doi: 10.1111/jocn.12828
Review
Introduction During the last decades, with increasing advances in health care practices and technologies, the survival rate of preterm infants has rapidly increased (Blencowe et al. 2013), dramatically contributing to the health costs in North American states (Johnston et al. 2014). Even in absence of clinical risk and injuries for the newborn, the hospitalisation of a preterm newborn in the highly medical Neonatal Intensive Care Unit (NICU) is a challenging and distressful experience for the parents. As a consequence, neonatal health care systems have shifted their goals towards a paradigm of quality of care, focusing on ways to promote wellbeing in a family-centred fashion and sustaining parental involvement since from infant birth (Lester et al. 2011, Montirosso et al. 2012a). Family-centred care in NICU involves the active engagement of both parents in the routine practice of daily care for preterm infants (Montirosso et al. 2012a, Skene et al. 2012). It has been found to exert beneficial effects, decreasing length of stay (Jotzo & Poets 2005), improving parental well-being (Melnyk et al. 2006) and fostering better neurobehavioural profile for the infant (Montirosso et al. 2012b). Mothers and fathers experiences differ in relation to delivery and NICU hospitalisation of their preterm infant (Matricardi et al. 2013). Notwithstanding, self-report measures of paternal and maternal distress during the NICU stay have led to controversial results: in the UK, mothers reported higher stress than fathers, especially for stressors related to NICU environment, whereas no significant differences emerged for North American samples (Franck et al. 2005). Nonetheless, the great majority of studies have mainly focused on mothers, with fathers being left on the bench. Emblematically, unless one looks closely to the sample description, the use of the word ‘parents’ in the title of most of the papers available in literature does not ensure that fathers were actually represented (Pohlman 2005). Despite Obeidat et al. (2009) recently published a systematic review (SR) on parental experience in NICU, they suggest that there is still an urge need to identify specific qualifiers of fathers’ experience, as they might differ from maternal ones. Moreover, it should be noted that the active engagement of fathers in NICU family-centred practices might be restricted by organisational, cultural and interpersonal barriers (Feeley et al. 2013a). In the light of the potentially different pathways of response to preterm birth among mothers and fathers, these considerations could lead to a critical bias in NICU parents’ literature, with limited information about the specific experience of preterm infants’ fathers during the NICU stay and the risk of © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1784–1794
Fathers of preterm infants in the NICU
misleading neonatal care actions within a family-centred care philosophy. From this point of view, understanding paternal NICU experience in terms of emotions, feelings, fears, needs and representations is crucial for nurses and physicians to be efficiently able to actively engage fathers in the routine care of prematurely born infants. To this extent, quantitative studies were excluded from the present SR as they could not provide in-depth accounts of paternal lived experience. Moreover, qualitative studies have become a milestone in health care research as ways of developing nursing effective interventions in different areas of medical health care (Graffigna et al. 2014).
Aims and methods In the present paper, we report a SR of qualitative studies on fathers’ experience of preterm delivery and NICU stay, as an established method to integrate existing literature on a topic related to health care research and practice (Hoga et al. 2014, P€ olkki et al. 2014). The general purpose was to provide an in-depth comprehension of the unique and specific response pathways of fathers to the experience of having a preterm baby hospitalised in the NICU. More precisely, authors were interested in: (1) providing an integrated view of the main themes that characterise paternal experience of preterm birth and NICU stay; (2) offering an appreciable point of view on the dynamic changes of the emerging themes as they modify across the clinical NICU journey.
Search strategy The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines (Moher et al. 2011) was adopted for the purposes of the present SR. A computer-based literature search was conducted on studies published between 2000–2014 on the following databases: PubMed, CINAHL, ISI Web of Science and SCOPUS. Title/ abstract search string was: ‘Neonatal Intensive Care Unit AND (parents AND/OR fathers)’. To be more comprehensive in the first step of the PRISMA procedure, we opted to include in the search string both parents and/or fathers, given that several studies focusing on both mothers and fathers simply refer to parents in title and abstract. For the same purpose, any referral to preterm/premature infants or preterm/premature birth/delivery was avoided, as research on parental NICU experience might include in the same sample parents of preterm infants and of infants hospitalised for other reasons, so that specific referral to preterm
1785
L Provenzi and E Santoro
birth might not be found in title and abstract of these papers.
PRISMA procedural steps PRISMA procedural steps adopted are reported in Fig. 1, together with records count, duplicates, step-by-step criteria-guided screening and records obtained after each screening. Methodology of papers included embraced – but was not limited to – grounded theory, ethnography and phenome-
nology. Records were considered eligible if papers were published on peer-reviewed, indexed scientific journals. No previous reviews were found and included. Fourteen studies were finally included and resuming information are provided in Table 1.
Assessment of methodological appraisal Quality appraisal was made through the Joanna Briggs Institute (JBI) Critical Appraisal Tool for Qualitative Studies (Porritt et al. 2014). Both authors contributed
Figure 1 Systematic review flow chart.
1786
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1784–1794
2001
Koppel and Kaiser (Germany) Pohlman (USA)
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1784–1794
2008
2008
Arockiasamy et al. (Canada)
Fegran et al. (Norway) Fegran et al. (Norway)
2012
2012
2013
2013
Heidari et al. (Iran)
Skene et al. (UK)
Arnold et al. (UK)
Feeley et al. (Canada)
2009
2007
Lindberg et al. (Sweden)
2005
Year
Authors (Country)
Semi-structured interview
Semi-structured interview
Focused ethnography
Semi-structured interview
and observations
Semi-structured interview Semi-structured interview
Semi-structured interview
Narrative interview
Semi-structured interview Semi-structured interview
Qualitative methods
Not specified
Excluded
Mean GA = 28 (SD = 29) weeks Mean BW = 1172 (SD = 4845) g 18 fathers
32 mothers and 7 fathers
GA
