Professional Documents
Culture Documents
doi: 10.1111/scs.12048
Department of Plastic and Reconstructive Surgery, Oslo University Hospital, Oslo, Norway, 2Faculty of Health Sciences, Oslo and Akershus
University College of Applied Sciences, Oslo, Norway and 3Department of Nursing, Faculty of Social and Life Sciences, Karlstad University,
Karlstad, Sweden
Introduction
Cleft lip and palate (CLP) are common birth defects (1).
In this study, CLP refer collectively to clefts of the lip,
clefts of the palate and clefts of both lip and palate. In the
country, approximately 120 children (1.9 per 1000 live
births) were born with an oral cleft (2). CLP in newborns
have implications for feeding. A cleft lip (CL) might
impede the childs attempts to seal around the nipple
when breastfeeding. A cleft palate (CP) might prevent the
baby from creating a necessary negative pressure (3). Different feeding difficulties were described by Reid et al. (4)
in a clinical cohort of newborns with CLP, CP and CL.
Correspondence to:
Nina Lindberg, Department of Plastic and Reconstructive Surgery,
Oslo University Hospital, NO-0027 Oslo, Norway. E-mail: nina.
lindberg@ous-hf.no
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Participants
The participants were selected from the attendance of a
class for families with newborn babies with CLP under
the direction of the department of the hospital. In line
with appointed inclusion and exclusion criteria, a variety of
informants with babies with different cleft types were
selected. After being informed by the nurse responsible
for the programme about the aim of the study and after
being given written and oral information, twelve mothers
were recruited and agreed to participate. The mothers
Data collection
Thematic interviews were carried out by one of the
researchers (NL) in the hospital or in the familys home
depending on their choices. An interview guide was used
focusing on open-ended themes such as breastfeeding,
bottle feeding, emotional reactions, the role of healthcare
professionals and coping. The participants were encouraged to describe their feelings and experiences as fully
and as deeply as possible. During the interview, they
were asked to give examples and to clarify. Two pilot
interviews were carried out before the interviewer could
strive to vary the focus of the phenomena under study
(11). The interviews took place during spring and winter
of 2010. The interviews lasted between 3060 minutes,
were digitally recorded and transcribed verbatim by the
interviewer (NL).
Data analysis
In phenomenography, a series of analytic steps are
described (11, 12). In this study, the analysis carried out
was inspired by Dahlgren and Fallsberg (15), modified by
Sj
ostr
om and Dahlgren (13). In the first step in the analysis process, familiarisation, the interviews were transcribed
verbatim and read thoroughly many times to get an overall impression and deep knowledge of the material. The
Table 1 Sociodemographic characteristics in children born with CLP and mothers experiences of feeding (n-12)
Age of
informant
Sex of
child
Cleft
type
Pre- or postnatal
diagnosis
Sibling
Breastfed
sibling
Attempted
breastfeeding
Breastfed
child
Support in
breastfeeding
Expressed
breastmilk
Type of
bottle
24
28
36
31
24
33
34
26
29
33
32
32
M
F
F
M
M
M
F
F
F
M
F
F
CLP
CLP
CP
CLP-bilat
CLP
CLP
CP
CL
CL
CLP-bilat
CLP-bilat
CP
Post
Post
Post
Pre
Pre
Pre
Post
Pre
Post
Pre
Pre
Post
None
None
2
1
None
3
1
1
1
1
1
None
No
No
Yes
Yes
No
Yes
Yes
Yes
Yes
Yes
Yes
No
No
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
Yes
No
No
Yes
No
No
Yes
No
Yes
Yes
No
No
Yes
No
No
Yes
No
No
Yes
No
No
No
No
No
Yes
2 days
2 week
12 week22 week12 week
16 week28 week
No
10 week
12 week
20 week
26 week
Soft
Soft
Soft
Soft
Soft
Soft
Soft
None
Soft
Soft
Soft
Soft
CLP= Cleft lip and palate; CL= Cleft lip; CP= Cleft palate; Week-= more than.
2013 Nordic College of Caring Science
(2 week)
(3 month)
(1 month)
(1 week)
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second step involved compilation of answers from the informants to identify the most significant elements. In the
third step, condensation or reduction in the individual
answers, 714 statements related to how the mothers experienced feeding were identified. In the next steps, comparison and grouping, all statements were compared to find
differences and similarities. In order to have an overview,
the statements that described similarities of experiences
were first grouped into 14 themes, before being restructured into six subcategories. At the sixth step, labelling, the
subcategories were named to illustrate the content/core of
the categories. Finally, in the last step, contrasting, the subcategories were compared on an abstract level and were
grouped before two main categories emerged. Recurrent
discussions were held during the different steps of analysis
until agreement was obtained between the researchers.
Trustworthiness
This created opportunities for the reader to determine
the credibility, auditability, fittingness and logic of the study
(16). Pilot interviews were carried out in order to make
the interviewer (NL) comfortable with the interview situation and test the interview guide (17). The use of
quotations to illustrate the description of the categories
was also meant to increase credibility (13, 16). Auditability
was reached by following the different steps in the phenomenographic analysis process as closely as possible
(13, 18, 19). Fittingness depends to a large extent on its
degree of credibility according to Sandelowski (18), that
is, strategies used to determine credibility through
enhanced fittingness as well as purposeful sampling of
informants.
Ethical considerations
The study was carried out in accordance with ethical
principles and guidelines of human research (20). Informants received written and oral information about the
aim of the study and its design, as well as about voluntariness and confidentiality.
Findings
Two main categories and six subcategories emerged during the analysis. The first main category, Being a capable
and good mother, included the mothers various conceptions of the desire and effort they had made to feed the
baby. The first subcategory described the mothers need of
information and support and the lack of expertise in
healthcare professionals when it came to CLP and feeding.
The second subcategory included descriptions of the feeding process. Various conceptions of closeness to the child
were described in the third subcategory, while the fourth
consisted of descriptions related to how to do everything
correctly. The second main category, Coping with challenges
related to feeding, described what the mothers perceived as
important in order to cope with challenges related to
feeding. The first subcategory illustrated how the mothers
used their own resources, while the second subcategory
consisted of descriptions of how healthcare professionals
contributed to the coping process (Fig. 1).
Competence in feeding
Feeding the baby
Being a capable and good mother
Closeness to the baby
Doing the correct thing
Using own resources
Coping with the challenges related
to feeding
Figure 1 Mothers experiences of feeding the babies described in the relationship between the main categories and subcategories.
2013 Nordic College of Caring Science
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been very good in supporting when trying out breastfeeding and bottle feeding he sterilizes the equipment
and organizes. The sharing of the challenges also contributed to a team spirit. and the fact that we shared
sometimes he fed her and I washed up and that he
also took shifts it became a family project, simply. A
feeling of being equal appeared when the mothers
watched the fathers responding to the newborns signals.
She was so fond of her father he was at least as good
as me. Differences in the mothers own reactions compared with the fathers were reported. On one hand, a
feeling of distance and loneliness appeared. On the other
hand, the differences were understandable and something the mothers were familiar with. He did not really
understand why I thought it was hard but it does not
matter we do not understand everything, do we? Practical help and support from immediate family were of
great importance to the mothers. The most important
thing for me is that I have people around Im not
alone they are supportive and listen to my
frustrations.
The behaviour of healthcare professionals. Healthcare professionals who had an open attitude, showed willingness to
help and took a clear responsibility had a powerful
impact on the mothers coping process. I contacted the
healthcare center before birth to let them know that my
baby had a cleft. Great, she said I will get in contact
with the expertise and find out and they have been
just fabulous.
The mothers reported that it was important to receive
simple and specific information when the situation was
perceived as chaotic. Counselling by healthcare professionals was important when the mothers wanted to try
out breastfeeding. It contributed to acceptance in the
mothers who did not manage breastfeeding.
In a way, I knew in what direction it would go
though, it was good to get confirmation that I took
the right decision it was not something that I
missed.
When being encouraged and supported by healthcare
professionals, the mothers had a deeper understanding
for their own reactions and for how they responded to
the situation. I have received positive feedback on what
I have managed and its been good to see okay, if
Im tired there is a reason why.
Discussion
The significance of being a capable and good mother was
a central finding in the study. The mothers strong determination and great effort to find the optimal nutrition
and feeding technique was obvious. According to Brown
et al. (21), good mothers were expected to place the
needs of the infant above their own, to be patient and to
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Acknowledgements
The authors wish to thank the mothers for their participation in the study.
Author contribution
Conclusion and implication for practice
Mothers of children born with CLP were in need of
individual information and support by healthcare professionals with expertise in feeding at the time of the diagnosis and until feeding was manageable. Once the
diagnosis was known, concern about feeding was seen
in the mothers followed by a process of assessing, selecting and trying out different feeding methods to make a
feeding decision. The different experiences in the mothers and their emotional reactions to breastfeeding, bottle
feeding, breastmilk expression and the impact feeding
had on the maternal instinct were striking. Feelings of
being different and a need to explain their feeding
choices were seen. The mothers made great efforts with
the feeding aspects in order to be capable and good
mothers. They were active and determined and used
their own personal resources to cope with the challenges
related to feeding. The fathers participation in feeding
and care for the baby, and support from immediate family, were factors of major importance to the mothers
References
1 International Centre for Birth
defects. World Atlas of Birth Defects,
2nd edn. 2003, World Health Organization, Geneva.
2 Sivertsen
A, Wilcox A, Johnson GE,
Abyholm F, Vindenes HA, Lie RT.
Prevalence of major anatomic variations in oral clefts. Plast Reconstr Surg
2006; 121: 58796.
3 Bessell A, Hooper L, Shaw WC, Reilly S, Reid J, Glenny AM. Feeding
interventions
for
growth
and
development in infants with cleft lip,
Ethical approval
Permission to carry out the study was given in 2009 by
Head of the Department of Plastic and Reconstructive
Surgery, Oslo University Hospital, NO-0027 Oslo, where
the study was performed and from which the informants
were selected. The Norwegian Social Science Data Services and The Research Committee for Medical Research
Ethics for South Eastern Norway assessed and approved
the study, Diarie number S-09171a [6.2009.575].
Funding
None.
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13
14
15
16
17
28
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