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Published in: BMC Pediatrics 1/2014

Open Access 01-12-2014 | Research article

Parents’ views on care of their very premature babies in neonatal intensive care units: a qualitative study

Authors: Gillian Russell, Alexandra Sawyer, Heike Rabe, Jane Abbott, Gillian Gyte, Lelia Duley, Susan Ayers

Published in: BMC Pediatrics | Issue 1/2014

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Abstract

Background

The admission of a very premature infant to the neonatal intensive care unit (NICU) is often a difficult time for parents. This paper explores parents’ views and experiences of the care for their very premature baby on NICU.

Methods

Parents were eligible if they had a baby born before 32 weeks gestation and cared for in a NICU, and spoke English well. 32 mothers and 7 fathers were interviewed to explore their experiences of preterm birth. Although parents’ evaluation of care in the NICU was not the aim of these interviews, all parents spoke spontaneously and at length on this topic. Results were analysed using thematic analysis.

Results

Overall, parents were satisfied with the care on the neonatal unit. Three major themes determining satisfaction with neonatal care emerged: 1) parents’ involvement; including looking after their own baby, the challenges of expressing breast milk, and easy access to their baby; 2) staff competence and efficiency; including communication, experience and confidence, information and explanation; and 3) interpersonal relationships with staff; including sensitive and emotional support, reassurance and encouragement, feeling like an individual.

Conclusions

Determinants of positive experiences of care were generally consistent with previous research. Specifically, provision of information, support for parents and increasing their involvement in the care of their baby were highlighted by parents as important in their experience of care.
Literature
1.
go back to reference Chow Y, Dattani N, Hilder L, Macfarlane A, Moser K: Introducing new data on gestation-specific infant mortality among babies born in 2005 in England and Wales. Presents analyses of infant mortality by gestational age and social and biological factors. Health Stat Q. 2007, 35: 13-27.PubMed Chow Y, Dattani N, Hilder L, Macfarlane A, Moser K: Introducing new data on gestation-specific infant mortality among babies born in 2005 in England and Wales. Presents analyses of infant mortality by gestational age and social and biological factors. Health Stat Q. 2007, 35: 13-27.PubMed
2.
go back to reference Bhutta AT, Cleves MA, Casey PH, Cradock MM, Anand KJS: Cognitive and behavioral outcomes of school-aged children who were born preterm: A meta-analysis. JAMA. 2002, 288: 728-737. 10.1001/jama.288.6.728.CrossRefPubMed Bhutta AT, Cleves MA, Casey PH, Cradock MM, Anand KJS: Cognitive and behavioral outcomes of school-aged children who were born preterm: A meta-analysis. JAMA. 2002, 288: 728-737. 10.1001/jama.288.6.728.CrossRefPubMed
3.
go back to reference Zeitlin J, Draper ES, Kollee L, Milligan D, Boerch K, Agostino R, Gortner L, Van Reempts P, Chabernaud JL, Gadzinowski J, MOSAIC Research Group: Differences in rates and short-term outcome of live births before 32 weeks of gestation in Europe in 2003: results from the MOSAIC cohort. Pediatrics. 2008, 121: 936-944. 10.1542/peds.2007-1620.CrossRef Zeitlin J, Draper ES, Kollee L, Milligan D, Boerch K, Agostino R, Gortner L, Van Reempts P, Chabernaud JL, Gadzinowski J, MOSAIC Research Group: Differences in rates and short-term outcome of live births before 32 weeks of gestation in Europe in 2003: results from the MOSAIC cohort. Pediatrics. 2008, 121: 936-944. 10.1542/peds.2007-1620.CrossRef
4.
go back to reference Siegel R, Gardner SL, Merenstein GB: Families in crisis: theoretic and practical considerations. Handbook of Neonatal Intensive Care Eds. Edited by: Merenstein GB Gardner SL. 2002, Missouri: Mosby, 725-753. Siegel R, Gardner SL, Merenstein GB: Families in crisis: theoretic and practical considerations. Handbook of Neonatal Intensive Care Eds. Edited by: Merenstein GB Gardner SL. 2002, Missouri: Mosby, 725-753.
5.
go back to reference Saigal S, Doyle LW: An overview of mortality and sequelae of preterm birth from infancy to adulthood. Lancet. 2008, 371: 261-269. 10.1016/S0140-6736(08)60136-1.CrossRefPubMed Saigal S, Doyle LW: An overview of mortality and sequelae of preterm birth from infancy to adulthood. Lancet. 2008, 371: 261-269. 10.1016/S0140-6736(08)60136-1.CrossRefPubMed
6.
go back to reference Lupton D, Fenwick J: ‘They’ve forgotten that I’m the mum’: constructing and practicing motherhood in special care nurseries. Soc Sci Med. 2001, 53: 1011-1021. 10.1016/S0277-9536(00)00396-8.CrossRefPubMed Lupton D, Fenwick J: ‘They’ve forgotten that I’m the mum’: constructing and practicing motherhood in special care nurseries. Soc Sci Med. 2001, 53: 1011-1021. 10.1016/S0277-9536(00)00396-8.CrossRefPubMed
7.
go back to reference POPPY Steering Group: Family-centred care in neonatal units. A summary of research results and recommendations from the POPPY project. 2009, London: NCT POPPY Steering Group: Family-centred care in neonatal units. A summary of research results and recommendations from the POPPY project. 2009, London: NCT
8.
go back to reference Mundy CA: Assessment of family needs in neonatal intensive care units. Am J Crit Care. 2010, 19: 156-163. 10.4037/ajcc2010130.CrossRefPubMed Mundy CA: Assessment of family needs in neonatal intensive care units. Am J Crit Care. 2010, 19: 156-163. 10.4037/ajcc2010130.CrossRefPubMed
9.
go back to reference Redshaw ME, Hamilton KES: Family centred care? Facilities, information and support for parents in UK neonatal units. Arch Dis Child- Fetal Neonatal Ed. 2010, 95: 365-368. 10.1136/adc.2009.163717.CrossRef Redshaw ME, Hamilton KES: Family centred care? Facilities, information and support for parents in UK neonatal units. Arch Dis Child- Fetal Neonatal Ed. 2010, 95: 365-368. 10.1136/adc.2009.163717.CrossRef
10.
go back to reference Cockcroft S: How can family centred care be improved to meet the needs of parents with a premature baby in neonatal intensive care?. J Neonatal Nurs. 2012, 18: 105-110. 10.1016/j.jnn.2011.07.008.CrossRef Cockcroft S: How can family centred care be improved to meet the needs of parents with a premature baby in neonatal intensive care?. J Neonatal Nurs. 2012, 18: 105-110. 10.1016/j.jnn.2011.07.008.CrossRef
11.
go back to reference Jackson JL, Chamberlin J, Kroenke K: Predictors of patient satisfaction. Soc Sci Med. 2001, 52: 609-620. 10.1016/S0277-9536(00)00164-7.CrossRefPubMed Jackson JL, Chamberlin J, Kroenke K: Predictors of patient satisfaction. Soc Sci Med. 2001, 52: 609-620. 10.1016/S0277-9536(00)00164-7.CrossRefPubMed
12.
go back to reference Sitzia J, Wood N: Patient Satisfaction: A review of issues and concepts. Soc Sci Med. 1997, 12: 1829-1843.CrossRef Sitzia J, Wood N: Patient Satisfaction: A review of issues and concepts. Soc Sci Med. 1997, 12: 1829-1843.CrossRef
13.
go back to reference Aagaard H, Hall EOC: Mothers’ Experiences of Having a Preterm Infant in the Neonatal Care Unit: A Meta-Synthesis. J Pediatr Nurs. 2008, 23: 26-36. 10.1016/j.pedn.2007.02.003.CrossRef Aagaard H, Hall EOC: Mothers’ Experiences of Having a Preterm Infant in the Neonatal Care Unit: A Meta-Synthesis. J Pediatr Nurs. 2008, 23: 26-36. 10.1016/j.pedn.2007.02.003.CrossRef
14.
go back to reference Roller CG: Getting to know you: Mothers’ experiences of kangaroo care. J Obstet Gynecol Neonatal Nurs. 2005, 34: 210-217. 10.1177/0884217504273675.CrossRefPubMed Roller CG: Getting to know you: Mothers’ experiences of kangaroo care. J Obstet Gynecol Neonatal Nurs. 2005, 34: 210-217. 10.1177/0884217504273675.CrossRefPubMed
15.
go back to reference Gale G, Franck LS: Toward a standard of care for parents of infants in the neonatal intensive care unit. Crit Care Nurs. 1998, 18: 62-64. Gale G, Franck LS: Toward a standard of care for parents of infants in the neonatal intensive care unit. Crit Care Nurs. 1998, 18: 62-64.
16.
go back to reference Auslander GK, Netzer D, Arad I: Parents’ Satisfaction With Care in the Neonatal Intensive Care Unit: The Role of Sociocultural Factors. Child Health Care. 2003, 32: 17-36. 10.1207/S15326888CHC3201_2.CrossRef Auslander GK, Netzer D, Arad I: Parents’ Satisfaction With Care in the Neonatal Intensive Care Unit: The Role of Sociocultural Factors. Child Health Care. 2003, 32: 17-36. 10.1207/S15326888CHC3201_2.CrossRef
17.
go back to reference Sawyer A, Rabe H, Abbott J, Gyte G, Duley L, Ayers S: Parents’ experiences and satisfaction with care during the birth of their very preterm baby: a qualitative study. BJOG. 2013, 120: 637-643. 10.1111/1471-0528.12104.CrossRefPubMedPubMedCentral Sawyer A, Rabe H, Abbott J, Gyte G, Duley L, Ayers S: Parents’ experiences and satisfaction with care during the birth of their very preterm baby: a qualitative study. BJOG. 2013, 120: 637-643. 10.1111/1471-0528.12104.CrossRefPubMedPubMedCentral
18.
go back to reference Britton JR: The assessment of satisfaction with care in the perinatal period. J Psychosom Obstet Gynecol. 2012, 33: 37-44. 10.3109/0167482X.2012.658464.CrossRef Britton JR: The assessment of satisfaction with care in the perinatal period. J Psychosom Obstet Gynecol. 2012, 33: 37-44. 10.3109/0167482X.2012.658464.CrossRef
19.
go back to reference Arnold L, Sawyer A, Rabe H, Abbott J, Gyte G, Duley L, Ayers S: Parents’ first moments with their very preterm babies: a qualitative study. BMJ Open. 2013, e002487-doi:10.1136/bmjopen-2012-002487 Arnold L, Sawyer A, Rabe H, Abbott J, Gyte G, Duley L, Ayers S: Parents’ first moments with their very preterm babies: a qualitative study. BMJ Open. 2013, e002487-doi:10.1136/bmjopen-2012-002487
20.
go back to reference Braun V, Clarke V: Using thematic analysis in psychology. Qual Res Psychol. 2006, 3: 77-101. 10.1191/1478088706qp063oa.CrossRef Braun V, Clarke V: Using thematic analysis in psychology. Qual Res Psychol. 2006, 3: 77-101. 10.1191/1478088706qp063oa.CrossRef
21.
go back to reference Baum N, Weidberg Z, Osher Y, Kohelet D: No longer pregnant, now yet a mother: Giving birth prematurely to a very-low-birth-weight baby. Qual Health Res. 2012, 22: 595-606. 10.1177/1049732311422899.CrossRefPubMed Baum N, Weidberg Z, Osher Y, Kohelet D: No longer pregnant, now yet a mother: Giving birth prematurely to a very-low-birth-weight baby. Qual Health Res. 2012, 22: 595-606. 10.1177/1049732311422899.CrossRefPubMed
22.
go back to reference Wigert H, Johansson R, Berg M, Hellstrom AL: Mothers’ experiences of having their newborn child in a neonatal intensive care unit. Scand J Caring Sci. 2006, 20: 35-41. 10.1111/j.1471-6712.2006.00377.x.CrossRefPubMed Wigert H, Johansson R, Berg M, Hellstrom AL: Mothers’ experiences of having their newborn child in a neonatal intensive care unit. Scand J Caring Sci. 2006, 20: 35-41. 10.1111/j.1471-6712.2006.00377.x.CrossRefPubMed
23.
go back to reference Shaw RJ, Deblois T, Ikuta L, Ginzburg K, Fleisher B, Koopman C: Acute stress disorder among parents of infants in the neonatal intensive care nursery. Psychosomatics. 2006, 47: 206-212. 10.1176/appi.psy.47.3.206.CrossRefPubMed Shaw RJ, Deblois T, Ikuta L, Ginzburg K, Fleisher B, Koopman C: Acute stress disorder among parents of infants in the neonatal intensive care nursery. Psychosomatics. 2006, 47: 206-212. 10.1176/appi.psy.47.3.206.CrossRefPubMed
24.
go back to reference Smith VC, Steelfisher GK, Salhi C, Shen LY: Coping with the neonatal intensive care unit experience: parents' strategies and views of staff support. J Perinat Neonatal Nurs. 2012, 26: 343-352. 10.1097/JPN.0b013e318270ffe5.CrossRefPubMed Smith VC, Steelfisher GK, Salhi C, Shen LY: Coping with the neonatal intensive care unit experience: parents' strategies and views of staff support. J Perinat Neonatal Nurs. 2012, 26: 343-352. 10.1097/JPN.0b013e318270ffe5.CrossRefPubMed
25.
go back to reference Nykvist KH, Engvall G: Parents as their infant’s primary caregivers in a neonatal intensive care unit. J Pediatr Nurs. 2009, 24: 153-163. 10.1016/j.pedn.2008.07.006.CrossRef Nykvist KH, Engvall G: Parents as their infant’s primary caregivers in a neonatal intensive care unit. J Pediatr Nurs. 2009, 24: 153-163. 10.1016/j.pedn.2008.07.006.CrossRef
26.
go back to reference Redshaw M, Harris A, Ingram J: Delivering Neonatal Care: The Neonatal Unit as a Working Environment: A Survey of Neonatal Unit Nursing. 1996, London: HMSO Redshaw M, Harris A, Ingram J: Delivering Neonatal Care: The Neonatal Unit as a Working Environment: A Survey of Neonatal Unit Nursing. 1996, London: HMSO
27.
go back to reference Harrison H: The principles of family centred care. Pediatrics. 1996, 92: 643-650. Harrison H: The principles of family centred care. Pediatrics. 1996, 92: 643-650.
28.
go back to reference Andaleeb S: Determinants of customer satisfaction with hospitals: a managerial model. Int. J Health Care Qual Assur. 1988, 11: 181-187.CrossRef Andaleeb S: Determinants of customer satisfaction with hospitals: a managerial model. Int. J Health Care Qual Assur. 1988, 11: 181-187.CrossRef
29.
go back to reference Fenwick J, Barclay L, Schmied V: ‘Chatting’: an important clinical tool in facilitating mothering in neonatal nurseries. J Adv Nurs. 2001, 33: 583-593. 10.1046/j.1365-2648.2001.01694.x.CrossRefPubMed Fenwick J, Barclay L, Schmied V: ‘Chatting’: an important clinical tool in facilitating mothering in neonatal nurseries. J Adv Nurs. 2001, 33: 583-593. 10.1046/j.1365-2648.2001.01694.x.CrossRefPubMed
30.
go back to reference Padden T, Glenn S: Maternal experiences of preterm birth and neonatal intensive care. J Reprod Infant Psychol. 1997, 15: 121-139. 10.1080/02646839708404539.CrossRef Padden T, Glenn S: Maternal experiences of preterm birth and neonatal intensive care. J Reprod Infant Psychol. 1997, 15: 121-139. 10.1080/02646839708404539.CrossRef
31.
go back to reference Cescutti-Butler L, Galvin K: Parents’ perceptions of staff competency in a neonatal intensive care unit. J Clin Nurs. 2003, 12: 752-761. 10.1046/j.1365-2702.2003.00783.x.CrossRefPubMed Cescutti-Butler L, Galvin K: Parents’ perceptions of staff competency in a neonatal intensive care unit. J Clin Nurs. 2003, 12: 752-761. 10.1046/j.1365-2702.2003.00783.x.CrossRefPubMed
32.
go back to reference Mitchell-DiCenso A, Guyatt G, Paes B, Blatz S, Kirpalani H, Fryers M, Husberger M, Pinelli J, Van Dover L, Southwell D: A new measure of parent satisfaction with medical care provided in the neonatal intensive care unit. J Clin Epidemiol. 1996, 49: 313-318. 10.1016/0895-4356(95)00531-5.CrossRefPubMed Mitchell-DiCenso A, Guyatt G, Paes B, Blatz S, Kirpalani H, Fryers M, Husberger M, Pinelli J, Van Dover L, Southwell D: A new measure of parent satisfaction with medical care provided in the neonatal intensive care unit. J Clin Epidemiol. 1996, 49: 313-318. 10.1016/0895-4356(95)00531-5.CrossRefPubMed
33.
go back to reference Redshaw ME, Harris A: Maternal perceptions of neonatal care. Acta Paediatr. 1995, 84: 593-598. 10.1111/j.1651-2227.1995.tb13705.x.CrossRefPubMed Redshaw ME, Harris A: Maternal perceptions of neonatal care. Acta Paediatr. 1995, 84: 593-598. 10.1111/j.1651-2227.1995.tb13705.x.CrossRefPubMed
34.
go back to reference Jones L, Woodhouse D, Rowe J: Effective nurse parent communication: a study of parents’ perceptions in the NICU environment. Patient Educ Couns. 2007, 69: 206-212. 10.1016/j.pec.2007.08.014.CrossRefPubMed Jones L, Woodhouse D, Rowe J: Effective nurse parent communication: a study of parents’ perceptions in the NICU environment. Patient Educ Couns. 2007, 69: 206-212. 10.1016/j.pec.2007.08.014.CrossRefPubMed
35.
go back to reference Fenwick J, Barclay L, Schmied V: Craving closeness: a grounded theory analysis of women's experiences of mothering in the Special Care Nursery. Women Birth. 2008, 21: 71-85. 10.1016/j.wombi.2008.03.006.CrossRefPubMed Fenwick J, Barclay L, Schmied V: Craving closeness: a grounded theory analysis of women's experiences of mothering in the Special Care Nursery. Women Birth. 2008, 21: 71-85. 10.1016/j.wombi.2008.03.006.CrossRefPubMed
37.
go back to reference Hurst I: Vigilant watching over: Mothers’ actions to safeguard their premature babies in the newborn intensive care nursery. J Perinat Neonatal Nurs. 2001, 21: 23-60. Hurst I: Vigilant watching over: Mothers’ actions to safeguard their premature babies in the newborn intensive care nursery. J Perinat Neonatal Nurs. 2001, 21: 23-60.
38.
go back to reference Aveyard P, Cheng KK, Manaseki S, Gardosi J: The risk of preterm delivery in women from different ethnic groups. Br J Obstet Gynaecol. 2002, 109: 894-899. 10.1111/j.1471-0528.2002.01197.x.CrossRef Aveyard P, Cheng KK, Manaseki S, Gardosi J: The risk of preterm delivery in women from different ethnic groups. Br J Obstet Gynaecol. 2002, 109: 894-899. 10.1111/j.1471-0528.2002.01197.x.CrossRef
39.
go back to reference Smith LK, Draper ES, Manktelow BN, Dorling JS, Field DJ: Socioeconomic inequalities in very preterm birth rates. Arch Dis Child Fetal Neonatal Ed. 2007, 92: F11-F14. 10.1136/adc.2005.090308.CrossRefPubMed Smith LK, Draper ES, Manktelow BN, Dorling JS, Field DJ: Socioeconomic inequalities in very preterm birth rates. Arch Dis Child Fetal Neonatal Ed. 2007, 92: F11-F14. 10.1136/adc.2005.090308.CrossRefPubMed
40.
go back to reference Wereszczak J, Miles MS, Holditch-Davis D: Maternal recall of the neonatal intensive care unit. Neonatal Netw. 1997, 16: 33-40.PubMed Wereszczak J, Miles MS, Holditch-Davis D: Maternal recall of the neonatal intensive care unit. Neonatal Netw. 1997, 16: 33-40.PubMed
41.
go back to reference Van Teijlingen ER, Hundley V, Rennie AM, Graham W, Fitzmaurice A: Maternity satisfaction studies and their limitations: “What is, must still be best”. Birth. 2003, 30: 75-82. 10.1046/j.1523-536X.2003.00224.x.CrossRefPubMed Van Teijlingen ER, Hundley V, Rennie AM, Graham W, Fitzmaurice A: Maternity satisfaction studies and their limitations: “What is, must still be best”. Birth. 2003, 30: 75-82. 10.1046/j.1523-536X.2003.00224.x.CrossRefPubMed
42.
go back to reference Freer Y, Lyon A, Stevenson B, Russell C: BabyLink- Improving communication among clinicians and with parents with babies in neonatal intensive care. Brit J Healthc Comp. 2005, 22: 34-36. Freer Y, Lyon A, Stevenson B, Russell C: BabyLink- Improving communication among clinicians and with parents with babies in neonatal intensive care. Brit J Healthc Comp. 2005, 22: 34-36.
43.
go back to reference Koh TH, Jarvis C: Promoting effective communication in neonatal intensive care units by audiotaping doctor-parent conversations. Int J Clin Pract. 1998, 52: 27-29.PubMed Koh TH, Jarvis C: Promoting effective communication in neonatal intensive care units by audiotaping doctor-parent conversations. Int J Clin Pract. 1998, 52: 27-29.PubMed
Metadata
Title
Parents’ views on care of their very premature babies in neonatal intensive care units: a qualitative study
Authors
Gillian Russell
Alexandra Sawyer
Heike Rabe
Jane Abbott
Gillian Gyte
Lelia Duley
Susan Ayers
Publication date
01-12-2014
Publisher
BioMed Central
Published in
BMC Pediatrics / Issue 1/2014
Electronic ISSN: 1471-2431
DOI
https://doi.org/10.1186/1471-2431-14-230

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