- Email: [email protected]
‘Catch up’ in children born prematurely: Maternal expectations
Journal of Neonatal Nursing (2009) 15, 25e30
www.elsevier.com/jneo
‘Catch up’ in children born prematurely: Maternal expectations* Sarah Manns* The Centre for Child and Adolescent Health, Hampton House, Cotham Hill, Bristol BS6 6JS, United Kingdom
KEYWORDS Catch-up; Premature; Hope; Childhood development
Abstract The term catch-up forms part of discourses that surround discussions about the development of children born prematurely. However, it is a critically unchallenged term. Doctoral research explored maternal expectations that have arisen from the adoption of the term catch-up when used in relation to the development of children born prematurely. Messages about ‘catch-up’ were captured from two discussion boards and two email groups that support families with children born prematurely and from 17 mothers living in the South West of England. Two major themes were identified as underpinning the discussions. The first theme was that of paradoxical hope where the hope offered by catch-up underpinned mothers’ discussions around catch-up, irrespective of whether they regarded hope as aspirational or as false hope. The second theme was drawn from mothers who challenged the discourse of catch-up demonstrating a different way of thinking about their children’s development. ª 2008 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved.
The term catch-up forms part of discourses that surround discussions about the development of children born prematurely although it is a critically unchallenged term. The aim of the doctoral research was to capture, explore and interpret maternal
* PhD funded by the Faculty of Health and Social Care, University of the West of England. * Tel.: þ44 117 3310893; fax: þ44 117 3310891. E-mail address: [email protected]
understandings around the term and to consider if receiving the catch-up message created expectations for mothers with regard to their view of the development of their prematurely born children. The interpretations of the findings, drawing on Gabriel Marcel and Friedrich Nietzsche, fall outside the parameters of this paper and will be discussed elsewhere. However, the aims of this paper are to reflect the mothers’ narratives and by doing so demonstrate how the use of the term catch-up impacted upon their lives.
1355-1841/$ - see front matter ª 2008 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.jnn.2008.11.002
26
Methods: participants, data collection and responses to the invitation to participate Three groups of mothers were drawn upon to explore the notion of catch-up: mothers who used discussion boards that support families with children born prematurely, mothers who used email groups that support families with children born prematurely and 17 mothers in the South West of England who were interviewed face to face. The electronic contributors came from primarily English speaking, westernised and industrialised countries i.e. United Kingdom, Australia, Canada, New Zealand, and the United States with one contributor from a Scandinavian country.
Discussion boards Two discussion boards were selected from two web sites that supported families born prematurely: The Preemie Place (www.thepreemieplace.org) and BLISS (www.bliss.org.uk). The Preemie Place (TPP) was set up by two mothers, one from the United Kingdom and one from the United States, both of whom had premature babies. The work of TPP stopped in late 2003. BLISS is a registered charity in the United Kingdom working in the area of prematurity. The purpose of using the discussion boards was to capture existing understandings that surrounded catch-up. The terms ‘catch up’ (no hyphen) and ‘catch-up’ (with a hyphen) were input to select messages which contained these search terms. The Preemie Place discussion board ran from January 2003 to Dec 2003 and had 214 members. As the web site was discontinued, it was not possible to establish the number of topics or number of postings made. The BLISS board opened in June 2003 (http://www. blissmessageboard.org.uk/) and the search was run in December 2003. There were 302 members and 188 had made 1853 postings with 360 topics in all. Using the hyphenated term ‘catch-up’ brought up no results. The non-hyphenated term returned threads under the forum headings that existed at that time: Dad’s Chat, General Chat and Parent Chat.
Email groups Two email groups were contacted as a consultation exercise to ask for their assistance in considering issues around catch-up that they felt might be relevant for the face-to-face issues in the locality. Part of the consultation was also to ask for their views and feelings about catch-up and how the
S. Manns mothers felt about it as a term. The groups were Preemie Child (http://www.comeunity.com/ premature/preemie-child/) and Neonatology and the Rights of the Family (http://narof.org/). Both groups were created for parents of children born prematurely and committed to supporting families over the longer term of living with children born prematurely as opposed to the neonatal unit experience. Preemie Child started in 1997 and had 452 subscribers. Preemie Child is described as a ‘Mailing List for parents of children born premature who are now school age or older’ or as ‘the support group for parents of children born prematurely who are now 4 years old or older’. The second email group, NaRoF, had 60 members and is best known for its public advocacy in the world of prematurity. This is a closed ‘by invitation only’ list. They feel the site offers ‘a safe place for open, honest discussion of Neonatal Intensive Care Unit (NICU) practices and the lifelong consequences they have had for our families’ (http://narof.org/intro.htm). Emails were sent to both Preemie Child and NaRoF requesting their help for the research. 25 emails were received from Preemie Child, five were regular members of the list who post messages frequently. The remaining 20 were lurkers, people who read without responding to the messages sent to the group (Jones, 1999; Branscomb, 1998). 3 emails were received from the NaRoF email group. This lower rate of response may have been due to the lower member numbers in NaRoF; however, NaRoF members are generally parents of children with more profound difficulties and perhaps the theme of catch-up was not one they heard in their circumstances.
Interviewed mothers Mothers were selected whose children were aged 3, 5 or 7 years of chronological age at the time of invitation. Children born up to and including 32 weeks gestational age (ga), with a birthweight above the 10th centile were included. Birthweight and ga were confirmed in maternal interviews. Children born later than 32 weeks ga were excluded as they are the least at-risk group in terms of their outcomes and the study was designed to establish if catch-up was used for the most compromised of babies. It was an inclusion criteria that the mothers spoke and read English fluently. 89 children aged 3 years of age at the time of interview met the criteria; 3 responses were received: Marie,33, mother to a son born at 32 weeks ga, weighing 5 lb 1 oz
‘catch up’ in children born prematurely Daisy,34, mother to a son born at 28 weeks ga, weighing 2 lb 11 oz Ila,37, mother to a son born at 27 weeks ga, weighing 2 lb 8 oz 55 children aged 5 years of age at the time of interview met the criteria; 7 responses were received: Jamie,42, mother to a son, born at 30 weeks ga, weighing 4 lb 4 oz Gabrielle,31, mother to a daughter, born at 30 weeks ga, weighing 2 lb 11 oz Teri,25, mother to a daughter, born at 29 weeks, weighing 3 lb 2 oz Sharon,42, mother to a son, born at 29 weeks ga, weighing 2 lb 11 oz Stevie,34, mother to a son, born at 28 weeks ga, weighing 2 lb 10 oz Gemma, 47, mother to a son, born at 27 weeks ga, weighing 2 lb 12 oz Bryony,38, mother to a son, born at 25 weeks ga, weighing 1 lb 12 oz 79 children aged children aged 7 years of age at the time of interview met the criteria; 7 responses were received: Felicity,39, mother to a son born at 32 weeks ga, weighing 3 lb 11 oz Sheila,32, mother to a son, born at 32 weeks, weighing 2 lb 15 oz Holly,46, mother to a son born at 31 weeks ga, weighing 6 lb 2 oz Roberta,33, mother to a daughter born at 31 ga, weighing 3 lb 6 oz Kerry, 50, mother to a daughter, born at 30 weeks ga, weighing 2 lb 10 oz Sue,33, mother to a son, born at 30 weeks ga, weighing 2 lb 7 oz Sasha,39, mother to a daughter, born at 28 weeks ga, weighing 3 lb 2 oz Primarily, the 17 mothers interviewed were English speaking, British, married and lived in the South West of England. There was a limited range of ethnicity since of the 17 mothers, 15 self-described as white British; the remaining two mothers were selfdescribed as British Indian and of mixed parentage. Three mothers did not disclose their educational background, ten completed secondary school and four of the 17 attended University. No claims can be made about the socio-economic group of the mothers as details were not collected. The major limitations of the study are the lack of teenage and younger mothers and mothers with different ethnic backgrounds.
27
Data analysis Thematic, iterative analysis was chosen as the most supportive tool for analysis to explore the term catch-up and to consider ways in which it influenced mothering. Discussion board threads and email messages were searched for terms such as ‘level’, ‘same as’, ‘normal’, terms which formed part of the catch-up language and themes were identified that were linked with catch-up. To support the analysis, Inspiration software (http:// www.inspiration.com) was used to create visual representations of the data and themes. Of the 17 interviewed mothers, 11 scripts were transcribed into Microsoft Word and coded for themes by hand, 3 were hand written mind maps and coded by hand, 2 were put into Inspiration and 1 coded into NVIVO software package and coded for themes within NVIVO.
Discussion of themes: paradoxical hope and a different way of thinking about the children Two themes were identified that underpinned the maternal narratives. The first was that of paradoxical hope where mothers regarded catch-up either as an aspiration for their children or where catch-up was the perfect vice that prolonged their suffering, with mothers holding onto the message of catch-up, waiting for it to occur. The second theme arose from mothers who demonstrated a different way of thinking about the children and their development and so challenged the notion of catch-up.
Catch-up and paradoxical hope Hope was central to the mothers’ discussions around catch-up, whether their hope for their children was aspirational or regarded as false hope. ‘I think it would be more helpful and just as hopeful to say, developmental stuff might come up or physical, respiratory, visual, hearing, behavioral problems so you need to have regular assessments from a young age so you can either relax a bit about some things, or prepare to meet special needs as they arise, so that you can promote as much improvement as possible’ Georgina, Email Mother to a boy, over 13 years old Born at 25 weeks ga, weight not detailed ‘It was with this hope of ‘catch-up’ that we began the frenzied research and interventions that actually continue today.. almost 15 years later’
28
S. Manns Eva, Email Mother to a 15 year old girl Born at 24 weeks ga, weighing 1 lb 2 oz
‘I have my doubts whether she will ever live apart from me.but I try to hang onto hope that she will. The catch-up theory in my opinion is just a way for medical professionals to give false hope to mothers who are otherwise shell-shocked by the whole preemie experience’. Yolanda, Email Mother to a 12 year old girl Born at 26 weeks ga, weight not detailed However the quality of hope and its derivatives such as to have hope or hoping, were also heard with a more positive interpretation: ‘So I guess it is always there so, you come home with the expectation that., you know..hopefully yes they will catch- up, you know. It’s um.. it doesn’t go away until they do. Almost an’ they’ve done it and they’re there.they are the same..’ Gabrielle, Interview Mother to a 5 year old girl Born at 30 weeks ga, weighing 2 lb 11 oz 1) Hope: Definitions of Catch-Up Mothers’ questioned what catch-up actually meant, asking those who may be ‘in the know’ what the future might hold as their children develop: ‘.a mother in my NCT tea group said that most prem babies catch up by half once they reach their due date.is this true?’ Maggie, Discussion Board Mother to a 5 month old girl Born at 33 week ga weighing 3 lb 8 oz ‘I was told that prems tend to catch up physically anywhere between 1 and 2. Mentally, I am told, can take up to 7 years’. Stella, Discussion board Mother to a 14 month old girl Born at 27 weeks ga, weighing 2 lb 2 oz ‘It sometimes takes 2 years to catch up sometimes 5. I am reassured that by the time they are at school there isn’t any difference’ Cecile, Discussion Board Mother to a 15 month old boy Born at 32 weeks ga, weight not detailed ‘I also got told they catch up betime (sic) they are 2 years old. My eldest daughter was born at 29
weeks.she is now 8 years old and is of the same level as her class mates’. Enya, Discussion Board Mother to an 8 year old girl Born at 29 weeks ga, weight not provided ‘.the doctor told me that sometimes premies don’t catch up till their teens!’ Eily-Rose, Discussion Board Mother to a 20 month old boy Born at 29 weeks ga, weighing 2 lb 2 oz The quotations demonstrate how mothers become drawn into a teleological way of thinking about their children, an end related fashion, waiting for their children to reach the appropriate birthday when the children can be measured against the developmental milestones. 2) Hope: Catch-up as Captivity An interpretation of catch-up that became increasingly important was that of feeling held captive by catch-up and this aspect of captivity had the clearest dissonance in the mothers’ meanings attached to or surrounding catch-up. The mothers in the email groups had held on to catch-up as a hope for the future and demonstrated that it was detrimental to their mothering since it ‘sat’ as a term in their consciousness as their children grew older. Eva told that: ‘.it was ’catch-up’ that held me prisoner for much too long. Although I still want to rationalize that it was the intent to give us hope back then in the horrific place where we had landed, it was probably the most detrimental obstacle for me to overcome’ Eva, Email Mother to a 15 year old girl Born at 24 weeks ga, weighing 1 lb 2 oz Helen commented: ‘I am so angry right now because I wanted to believe in what I was often told e that my son would ‘catch-up’. He is almost 6 and recently tested at the 2.5 year old level (cognitive). I remember being told by the NICU nurses that he would ‘catch-up’ in a year. The doctors had a wait and see attitude’ Helen, Email Mother to a 6 year old boy Born at 30 weeks ga, weighing 2 lb 5 oz However, these views were generally in contrast to the mothers on the discussion boards and in the interviews who regarded catch-up as broadly more optimistic and more aspirational in its application to their lives.
‘catch up’ in children born prematurely
29
However, whether catch-up was regarded as negative or positive, what was central was the aspect of being held captive to or by catch-up and the associated way of thinking. What the mothers demonstrated was that catch-up often set up or created false values and mothers were then committed to those false values, waiting for their children to be other then they were.
Catch-up and a different way of thinking about the children
3) Hope: Truth Telling Mothers in the email consultation talked of placing their hope for their children’s futures in the messages received from the health professionals and felt they had been deceived. They had faith and belief in these messages, pinning their hopes for the future in the accuracy and truth of the catch-up message. Isabel commented that it was ‘emotionally damaging’ to have been told her child would catch-up by the time she was 2 years old. She felt ‘great resentment’ towards the doctors and others involved in the care of her daughter:
‘We all develop at different rates throughout our lives and to expect babies to be in a race to achieve can’t be right can it?’
‘If the doctors hadn’t said with such conviction that she would catch-up, I would feel more at peace with the progress she has made instead of waiting for her to catch-up’. Isabel, Email Mother to a 4 year old girl Born at 29 weeks ga, weighing 1 lb 3 oz These feelings around truth telling were echoed by Verity. When her son was born, she was told that he would catch-up by the time he was 2 years old and Verity commented that this phrase ‘did so much damage to me emotionally’. As her child grew older, she recounts that she: ‘.clung to that magic age.So was I living in cloud cuckoo land???.the closer we got to two the more apparent it became that things weren’t right.So maybe all would be well by the time he got to three, but as we lived through the ages of two to three it became more apparent that all was not well. It hit home when one of [son’s name] consultants told me that I couldn’t have a baby at 24 weeks and expect normal’ Verity, Email Mother to a 7 year old boy Born at 24 weeks ga, weight not detailed However, the issue of truth telling and its effects on the hopes of the mothers were not heard in the narratives of mothers who were interviewed. No clear interpretation can be made from this since the interviewed mothers were broadly more optimistic about the development of their children.
Narratives across all three groups of mothers demonstrated that some mothers avoided the colonising discourse of catch-up and engaged with their children as they were as opposed to images of what they might become:
Danni, Discussion Board Mother to a nearly 4 year old boy Born at 33 weeks ga, weight not given ‘But im a great belaver (sic) in that they get there in there (sic) own time’. Skye. Discussion Board Mother to 4 children from 8 months to 7 years old ‘I think all babies including prem ones develop at their own pace and they will do things when they want to, so don’t worry’. Rhiannon. Discussion Board Mother to a 15 month old girl, Born at 30 weeks ga, weight not detailed Other mothers indicated that they almost grew out of the term catch-up: ‘And it’s at the time they start to develop their own personality and having conversations almost like adult conversation with you so you think ‘yeah, there’s. he’s no different, no different from anyone else’. Yeah, because that was almost like that turning point that he isn’t any different. He’s not premature anymore.You forget, you do forget all those sleepless nights, all the anxiety, all the stress. But it’s not a concern any more, it’s irrelevant, that was just something I had to go through to get to where I am today’. Sheila, Interview Mother to a 7 year old boy Born at 32 weeks weighing 2 lb 15 oz These mothers demonstrated that there were different ways of thinking about their children’s development and these ways of thinking kept their hope not end related but fluid and open.
Conclusion This paper reflected how catch-up was a widely used phrase in all three groups of mothers and had been adopted into discourses about childhood
30
S. Manns
development by the mothers for this group of children. The maternal narratives have demonstrated how the use of the term catch-up channelled ways in which the mothers thought about the development of their children, how hope had a central role in their lives, they reflected there was no single definition of catch-up and that the term held them captive as their children grew older emphasising the value of truth telling from the doctors and nurses involved with the families. Some mothers chose different ways of thinking about their children’s development and in so doing avoided the discourse of catch-up and the associated telelogical way of regarding their children. For those who work with these families it is helpful to be mindful of the power of the catchup message and to consider that when discussing
the development of this group of children it may be most beneficial to leave the future less charted and measured and so assist mothers in having hope for the future in an open and fluid fashion.
References Branscomb, H., 1998. Casting Your Net: a Student’s Guide to Research on the Internet. Allyn and Bacon, Boston, London, Toronto, Sydney, Tokyo, Singapore. Jones, S. (Ed.), 1999. Doing Internet Research: Critical Issues and Methods for Examining the Net. Sage Publications, Thousand Oaks, London, New Delhi , , , , .
Available online at www.sciencedirect.com
www.elsevier.com/jneo
‘Catch up’ in children born prematurely: Maternal expectations* Sarah Manns* The Centre for Child and Adolescent Health, Hampton House, Cotham Hill, Bristol BS6 6JS, United Kingdom
KEYWORDS Catch-up; Premature; Hope; Childhood development
Abstract The term catch-up forms part of discourses that surround discussions about the development of children born prematurely. However, it is a critically unchallenged term. Doctoral research explored maternal expectations that have arisen from the adoption of the term catch-up when used in relation to the development of children born prematurely. Messages about ‘catch-up’ were captured from two discussion boards and two email groups that support families with children born prematurely and from 17 mothers living in the South West of England. Two major themes were identified as underpinning the discussions. The first theme was that of paradoxical hope where the hope offered by catch-up underpinned mothers’ discussions around catch-up, irrespective of whether they regarded hope as aspirational or as false hope. The second theme was drawn from mothers who challenged the discourse of catch-up demonstrating a different way of thinking about their children’s development. ª 2008 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved.
The term catch-up forms part of discourses that surround discussions about the development of children born prematurely although it is a critically unchallenged term. The aim of the doctoral research was to capture, explore and interpret maternal
* PhD funded by the Faculty of Health and Social Care, University of the West of England. * Tel.: þ44 117 3310893; fax: þ44 117 3310891. E-mail address: [email protected]
understandings around the term and to consider if receiving the catch-up message created expectations for mothers with regard to their view of the development of their prematurely born children. The interpretations of the findings, drawing on Gabriel Marcel and Friedrich Nietzsche, fall outside the parameters of this paper and will be discussed elsewhere. However, the aims of this paper are to reflect the mothers’ narratives and by doing so demonstrate how the use of the term catch-up impacted upon their lives.
1355-1841/$ - see front matter ª 2008 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.jnn.2008.11.002
26
Methods: participants, data collection and responses to the invitation to participate Three groups of mothers were drawn upon to explore the notion of catch-up: mothers who used discussion boards that support families with children born prematurely, mothers who used email groups that support families with children born prematurely and 17 mothers in the South West of England who were interviewed face to face. The electronic contributors came from primarily English speaking, westernised and industrialised countries i.e. United Kingdom, Australia, Canada, New Zealand, and the United States with one contributor from a Scandinavian country.
Discussion boards Two discussion boards were selected from two web sites that supported families born prematurely: The Preemie Place (www.thepreemieplace.org) and BLISS (www.bliss.org.uk). The Preemie Place (TPP) was set up by two mothers, one from the United Kingdom and one from the United States, both of whom had premature babies. The work of TPP stopped in late 2003. BLISS is a registered charity in the United Kingdom working in the area of prematurity. The purpose of using the discussion boards was to capture existing understandings that surrounded catch-up. The terms ‘catch up’ (no hyphen) and ‘catch-up’ (with a hyphen) were input to select messages which contained these search terms. The Preemie Place discussion board ran from January 2003 to Dec 2003 and had 214 members. As the web site was discontinued, it was not possible to establish the number of topics or number of postings made. The BLISS board opened in June 2003 (http://www. blissmessageboard.org.uk/) and the search was run in December 2003. There were 302 members and 188 had made 1853 postings with 360 topics in all. Using the hyphenated term ‘catch-up’ brought up no results. The non-hyphenated term returned threads under the forum headings that existed at that time: Dad’s Chat, General Chat and Parent Chat.
Email groups Two email groups were contacted as a consultation exercise to ask for their assistance in considering issues around catch-up that they felt might be relevant for the face-to-face issues in the locality. Part of the consultation was also to ask for their views and feelings about catch-up and how the
S. Manns mothers felt about it as a term. The groups were Preemie Child (http://www.comeunity.com/ premature/preemie-child/) and Neonatology and the Rights of the Family (http://narof.org/). Both groups were created for parents of children born prematurely and committed to supporting families over the longer term of living with children born prematurely as opposed to the neonatal unit experience. Preemie Child started in 1997 and had 452 subscribers. Preemie Child is described as a ‘Mailing List for parents of children born premature who are now school age or older’ or as ‘the support group for parents of children born prematurely who are now 4 years old or older’. The second email group, NaRoF, had 60 members and is best known for its public advocacy in the world of prematurity. This is a closed ‘by invitation only’ list. They feel the site offers ‘a safe place for open, honest discussion of Neonatal Intensive Care Unit (NICU) practices and the lifelong consequences they have had for our families’ (http://narof.org/intro.htm). Emails were sent to both Preemie Child and NaRoF requesting their help for the research. 25 emails were received from Preemie Child, five were regular members of the list who post messages frequently. The remaining 20 were lurkers, people who read without responding to the messages sent to the group (Jones, 1999; Branscomb, 1998). 3 emails were received from the NaRoF email group. This lower rate of response may have been due to the lower member numbers in NaRoF; however, NaRoF members are generally parents of children with more profound difficulties and perhaps the theme of catch-up was not one they heard in their circumstances.
Interviewed mothers Mothers were selected whose children were aged 3, 5 or 7 years of chronological age at the time of invitation. Children born up to and including 32 weeks gestational age (ga), with a birthweight above the 10th centile were included. Birthweight and ga were confirmed in maternal interviews. Children born later than 32 weeks ga were excluded as they are the least at-risk group in terms of their outcomes and the study was designed to establish if catch-up was used for the most compromised of babies. It was an inclusion criteria that the mothers spoke and read English fluently. 89 children aged 3 years of age at the time of interview met the criteria; 3 responses were received: Marie,33, mother to a son born at 32 weeks ga, weighing 5 lb 1 oz
‘catch up’ in children born prematurely Daisy,34, mother to a son born at 28 weeks ga, weighing 2 lb 11 oz Ila,37, mother to a son born at 27 weeks ga, weighing 2 lb 8 oz 55 children aged 5 years of age at the time of interview met the criteria; 7 responses were received: Jamie,42, mother to a son, born at 30 weeks ga, weighing 4 lb 4 oz Gabrielle,31, mother to a daughter, born at 30 weeks ga, weighing 2 lb 11 oz Teri,25, mother to a daughter, born at 29 weeks, weighing 3 lb 2 oz Sharon,42, mother to a son, born at 29 weeks ga, weighing 2 lb 11 oz Stevie,34, mother to a son, born at 28 weeks ga, weighing 2 lb 10 oz Gemma, 47, mother to a son, born at 27 weeks ga, weighing 2 lb 12 oz Bryony,38, mother to a son, born at 25 weeks ga, weighing 1 lb 12 oz 79 children aged children aged 7 years of age at the time of interview met the criteria; 7 responses were received: Felicity,39, mother to a son born at 32 weeks ga, weighing 3 lb 11 oz Sheila,32, mother to a son, born at 32 weeks, weighing 2 lb 15 oz Holly,46, mother to a son born at 31 weeks ga, weighing 6 lb 2 oz Roberta,33, mother to a daughter born at 31 ga, weighing 3 lb 6 oz Kerry, 50, mother to a daughter, born at 30 weeks ga, weighing 2 lb 10 oz Sue,33, mother to a son, born at 30 weeks ga, weighing 2 lb 7 oz Sasha,39, mother to a daughter, born at 28 weeks ga, weighing 3 lb 2 oz Primarily, the 17 mothers interviewed were English speaking, British, married and lived in the South West of England. There was a limited range of ethnicity since of the 17 mothers, 15 self-described as white British; the remaining two mothers were selfdescribed as British Indian and of mixed parentage. Three mothers did not disclose their educational background, ten completed secondary school and four of the 17 attended University. No claims can be made about the socio-economic group of the mothers as details were not collected. The major limitations of the study are the lack of teenage and younger mothers and mothers with different ethnic backgrounds.
27
Data analysis Thematic, iterative analysis was chosen as the most supportive tool for analysis to explore the term catch-up and to consider ways in which it influenced mothering. Discussion board threads and email messages were searched for terms such as ‘level’, ‘same as’, ‘normal’, terms which formed part of the catch-up language and themes were identified that were linked with catch-up. To support the analysis, Inspiration software (http:// www.inspiration.com) was used to create visual representations of the data and themes. Of the 17 interviewed mothers, 11 scripts were transcribed into Microsoft Word and coded for themes by hand, 3 were hand written mind maps and coded by hand, 2 were put into Inspiration and 1 coded into NVIVO software package and coded for themes within NVIVO.
Discussion of themes: paradoxical hope and a different way of thinking about the children Two themes were identified that underpinned the maternal narratives. The first was that of paradoxical hope where mothers regarded catch-up either as an aspiration for their children or where catch-up was the perfect vice that prolonged their suffering, with mothers holding onto the message of catch-up, waiting for it to occur. The second theme arose from mothers who demonstrated a different way of thinking about the children and their development and so challenged the notion of catch-up.
Catch-up and paradoxical hope Hope was central to the mothers’ discussions around catch-up, whether their hope for their children was aspirational or regarded as false hope. ‘I think it would be more helpful and just as hopeful to say, developmental stuff might come up or physical, respiratory, visual, hearing, behavioral problems so you need to have regular assessments from a young age so you can either relax a bit about some things, or prepare to meet special needs as they arise, so that you can promote as much improvement as possible’ Georgina, Email Mother to a boy, over 13 years old Born at 25 weeks ga, weight not detailed ‘It was with this hope of ‘catch-up’ that we began the frenzied research and interventions that actually continue today.. almost 15 years later’
28
S. Manns Eva, Email Mother to a 15 year old girl Born at 24 weeks ga, weighing 1 lb 2 oz
‘I have my doubts whether she will ever live apart from me.but I try to hang onto hope that she will. The catch-up theory in my opinion is just a way for medical professionals to give false hope to mothers who are otherwise shell-shocked by the whole preemie experience’. Yolanda, Email Mother to a 12 year old girl Born at 26 weeks ga, weight not detailed However the quality of hope and its derivatives such as to have hope or hoping, were also heard with a more positive interpretation: ‘So I guess it is always there so, you come home with the expectation that., you know..hopefully yes they will catch- up, you know. It’s um.. it doesn’t go away until they do. Almost an’ they’ve done it and they’re there.they are the same..’ Gabrielle, Interview Mother to a 5 year old girl Born at 30 weeks ga, weighing 2 lb 11 oz 1) Hope: Definitions of Catch-Up Mothers’ questioned what catch-up actually meant, asking those who may be ‘in the know’ what the future might hold as their children develop: ‘.a mother in my NCT tea group said that most prem babies catch up by half once they reach their due date.is this true?’ Maggie, Discussion Board Mother to a 5 month old girl Born at 33 week ga weighing 3 lb 8 oz ‘I was told that prems tend to catch up physically anywhere between 1 and 2. Mentally, I am told, can take up to 7 years’. Stella, Discussion board Mother to a 14 month old girl Born at 27 weeks ga, weighing 2 lb 2 oz ‘It sometimes takes 2 years to catch up sometimes 5. I am reassured that by the time they are at school there isn’t any difference’ Cecile, Discussion Board Mother to a 15 month old boy Born at 32 weeks ga, weight not detailed ‘I also got told they catch up betime (sic) they are 2 years old. My eldest daughter was born at 29
weeks.she is now 8 years old and is of the same level as her class mates’. Enya, Discussion Board Mother to an 8 year old girl Born at 29 weeks ga, weight not provided ‘.the doctor told me that sometimes premies don’t catch up till their teens!’ Eily-Rose, Discussion Board Mother to a 20 month old boy Born at 29 weeks ga, weighing 2 lb 2 oz The quotations demonstrate how mothers become drawn into a teleological way of thinking about their children, an end related fashion, waiting for their children to reach the appropriate birthday when the children can be measured against the developmental milestones. 2) Hope: Catch-up as Captivity An interpretation of catch-up that became increasingly important was that of feeling held captive by catch-up and this aspect of captivity had the clearest dissonance in the mothers’ meanings attached to or surrounding catch-up. The mothers in the email groups had held on to catch-up as a hope for the future and demonstrated that it was detrimental to their mothering since it ‘sat’ as a term in their consciousness as their children grew older. Eva told that: ‘.it was ’catch-up’ that held me prisoner for much too long. Although I still want to rationalize that it was the intent to give us hope back then in the horrific place where we had landed, it was probably the most detrimental obstacle for me to overcome’ Eva, Email Mother to a 15 year old girl Born at 24 weeks ga, weighing 1 lb 2 oz Helen commented: ‘I am so angry right now because I wanted to believe in what I was often told e that my son would ‘catch-up’. He is almost 6 and recently tested at the 2.5 year old level (cognitive). I remember being told by the NICU nurses that he would ‘catch-up’ in a year. The doctors had a wait and see attitude’ Helen, Email Mother to a 6 year old boy Born at 30 weeks ga, weighing 2 lb 5 oz However, these views were generally in contrast to the mothers on the discussion boards and in the interviews who regarded catch-up as broadly more optimistic and more aspirational in its application to their lives.
‘catch up’ in children born prematurely
29
However, whether catch-up was regarded as negative or positive, what was central was the aspect of being held captive to or by catch-up and the associated way of thinking. What the mothers demonstrated was that catch-up often set up or created false values and mothers were then committed to those false values, waiting for their children to be other then they were.
Catch-up and a different way of thinking about the children
3) Hope: Truth Telling Mothers in the email consultation talked of placing their hope for their children’s futures in the messages received from the health professionals and felt they had been deceived. They had faith and belief in these messages, pinning their hopes for the future in the accuracy and truth of the catch-up message. Isabel commented that it was ‘emotionally damaging’ to have been told her child would catch-up by the time she was 2 years old. She felt ‘great resentment’ towards the doctors and others involved in the care of her daughter:
‘We all develop at different rates throughout our lives and to expect babies to be in a race to achieve can’t be right can it?’
‘If the doctors hadn’t said with such conviction that she would catch-up, I would feel more at peace with the progress she has made instead of waiting for her to catch-up’. Isabel, Email Mother to a 4 year old girl Born at 29 weeks ga, weighing 1 lb 3 oz These feelings around truth telling were echoed by Verity. When her son was born, she was told that he would catch-up by the time he was 2 years old and Verity commented that this phrase ‘did so much damage to me emotionally’. As her child grew older, she recounts that she: ‘.clung to that magic age.So was I living in cloud cuckoo land???.the closer we got to two the more apparent it became that things weren’t right.So maybe all would be well by the time he got to three, but as we lived through the ages of two to three it became more apparent that all was not well. It hit home when one of [son’s name] consultants told me that I couldn’t have a baby at 24 weeks and expect normal’ Verity, Email Mother to a 7 year old boy Born at 24 weeks ga, weight not detailed However, the issue of truth telling and its effects on the hopes of the mothers were not heard in the narratives of mothers who were interviewed. No clear interpretation can be made from this since the interviewed mothers were broadly more optimistic about the development of their children.
Narratives across all three groups of mothers demonstrated that some mothers avoided the colonising discourse of catch-up and engaged with their children as they were as opposed to images of what they might become:
Danni, Discussion Board Mother to a nearly 4 year old boy Born at 33 weeks ga, weight not given ‘But im a great belaver (sic) in that they get there in there (sic) own time’. Skye. Discussion Board Mother to 4 children from 8 months to 7 years old ‘I think all babies including prem ones develop at their own pace and they will do things when they want to, so don’t worry’. Rhiannon. Discussion Board Mother to a 15 month old girl, Born at 30 weeks ga, weight not detailed Other mothers indicated that they almost grew out of the term catch-up: ‘And it’s at the time they start to develop their own personality and having conversations almost like adult conversation with you so you think ‘yeah, there’s. he’s no different, no different from anyone else’. Yeah, because that was almost like that turning point that he isn’t any different. He’s not premature anymore.You forget, you do forget all those sleepless nights, all the anxiety, all the stress. But it’s not a concern any more, it’s irrelevant, that was just something I had to go through to get to where I am today’. Sheila, Interview Mother to a 7 year old boy Born at 32 weeks weighing 2 lb 15 oz These mothers demonstrated that there were different ways of thinking about their children’s development and these ways of thinking kept their hope not end related but fluid and open.
Conclusion This paper reflected how catch-up was a widely used phrase in all three groups of mothers and had been adopted into discourses about childhood
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development by the mothers for this group of children. The maternal narratives have demonstrated how the use of the term catch-up channelled ways in which the mothers thought about the development of their children, how hope had a central role in their lives, they reflected there was no single definition of catch-up and that the term held them captive as their children grew older emphasising the value of truth telling from the doctors and nurses involved with the families. Some mothers chose different ways of thinking about their children’s development and in so doing avoided the discourse of catch-up and the associated telelogical way of regarding their children. For those who work with these families it is helpful to be mindful of the power of the catchup message and to consider that when discussing
the development of this group of children it may be most beneficial to leave the future less charted and measured and so assist mothers in having hope for the future in an open and fluid fashion.
References Branscomb, H., 1998. Casting Your Net: a Student’s Guide to Research on the Internet. Allyn and Bacon, Boston, London, Toronto, Sydney, Tokyo, Singapore
Available online at www.sciencedirect.com