1.
UNDERSTANDING THE CONCERNS OF CAREGIVERS ON
THE BIRTH OF A CHILD WITH CLEFT LIP AND PALATE:
A FOCUS GROUP APPROACH
MS. ARPITA CHATTERJEE
ASSISTANT PROFESSOR, PhD Scholar (Audiology)
SGRDUHS, AMRITSAR, INDIA
a.chatterjee@audsgrdimsr.in
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 The aim of the study was to explore the concerns of
caregivers of children with cleft lip and palate.
 Various qualitative methods like surveys, questionnaires and
interviews have been used to document the parental concerns.
 However, this study intended to explore group dynamics as a
method to understand how these family and community
perceptions are shared and/ or varied.
 Hence Focus Group Discussions (FGD) were conducted, where
small groups of individuals from a well defined target population
were brought together.
 This method allowed conducive environment for the participants
to share their experiences of having a child with cleft lip and
palate, with emphasis on the immediate concerns of the birth of
these children.
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Procedure:
 Each group consisted of the following members
 Participants (Caregivers 8-12/ group).
 Two facilitators (Speech Language Pathologist).
 Sit-in-Observer-cum-Recorder (Speech Language Pathologist).
 One principal moderator (Speech Language Pathologist).
 Materials used
 2 microphones (Ahuja SSB- 45 M).
 Amplifier (Maxpro- Maxim MX-111).
 Software (Gold wave audio recorder).
 Ethical considerations
 Consent forms were explained, as some of the participants were
illiterate. The participants conveyed the consent by either thumb
impression or by signing in the consent form.
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 All the investigators of this study attained a three day
training program under the guidance of Director,
Centre for Development and Research Training an
expert in Focus Group Discussions.
 The training program included on-field training on
FGD.
 Hence a pilot study was conducted by the investigators
to have hands on experience before initiating the
study. Further the method and results of this study
were also modified based on the suggestions of his
expert opinion.
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Preparing the format for participant-observation of activities cum
interviewing of the workers for the assessment
Execution of a Pilot study
Elaboration of database
Identifying the participants based on the selection criteria
Seeking permission from concerned authorities of ICDS programme
Obtaining the no objection certificate and consent from the authorities
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Identifying the venue
Arrangements of logistics for the conduction of the study
Approaching the Anganwadi workers/Supervisors and explaining the study to
them
Data collection by participant-observation and putting questions to
workers/supervisors based formats developed for the purpose
Fine tuning the methodology based on the pilot study and administering the same
on a larger scale.
Descriptive statistics will be used as supporting data from the existing secondary
sources, which will be gathered using desk research methodology
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 A focus group discussion provides an insight into the perception and practices
of a homogenous group of people about a topic or subject or a program that is
being implemented or had been implemented.
 It is participatory in nature and focuses on certain specific identified topics.
The technique facilitates full participation, free expression and capturing
verbatim of all the idiomatic expressions. Hence for broader understanding of
the concerns and experiences of caregivers of children with cleft lip and palate,
Focus Group Discussions were used. The verbatim captured, further aided in
understanding how their views were constructed and expressed.
 The focus group discussions were carried out in 5 different sessions. The
questions for Focus Group Discussion were framed based on the literature
findings, experience of the researchers and the pilot study. Table2. shows the
number of participants for each Focus Group Discussion sessions.
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 A written transcription was developed from the audio
recordings of each Focus Group Discussion. Transcription
was done by sequentially numbering each page and
transcripts were read several times to become familiar with
the data. For the purpose of internal validity, facilitators of
the discussion sessions reviewed the transcriptions for
completeness and accuracy.
 Since each focus group question correlated to a research
question, a preliminary outline was generated to organize
emerging themes.
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 While reading the data from each focus group question,
a preliminary list of predominant themes was
developed.
 For the purpose of safeguarding confidentiality, the
names of the participants were changed in the analysis
of the verbatim.
 While re-reading the transcripts, quotations were
marked into the outline of predominant themes,
followed by the page number and location of the quote.
 Once a substantial outline of prominent themes was
developed, the data was re-read and examined for
prominent sub-themes.
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 Themes and subthemes were modified to encompass
well-substantiated topics pertaining to ideas relevant
to the goals of the research.
 Descriptive summary method1 was used to report the
findings of the study. In the report a descriptive
summary of each theme was followed by illustrative
quotations and adjective phrases for emphasis and
clarity.
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 The results are compiled from the themes and
subthemes which emerged from all the focus groups
conducted in four blocks of the district. A descriptive
summary along with verbatim reproductions are
discussed on the various themes addressed in the
FGDs.
 The verbatim are enclosed in boxes to highlight the
specific topic of discussion. The major theme which
emerged from the narration of the caregivers group
was the initial reaction of having a child with cleft lip
and palate. Most of the caregivers broke into tears
recalling their experiences of after so many years.
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Venue Participants
approached
Participants volunteered
Females Males Total
Arani
(NGO)
24 06 10 16
The (DDRO
office)
40 07 16 23
Cheyyar
(Day Care
Centre)
25 10 07 17
Vandavasi
(CSI hospital)
20 04 08 12
Total 109 27 41 68
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 Mr. Selvam: I felt very bad
when I saw the child.
“Kozhandhaya
pakumbodhu romba
kashtama irundhudhu”
Mrs. Lakshmi: I got scared seeing my child
for the first time. “Partha udane
bayandhuten”
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Mr. Anbu: We planned to
give the child to someone
else.
“Thathukodukalamunn
u ninaichom”
Mr. Vishnu: Instead of feeling happy I felt very bad…I
didn’t want to take the child anywhere.
“Sandhoshama irrukaruthuku badhila kashtama
irrundhudhu adhanala veliya engayum kuttitu
pogala”
Mr. Sugumar: my wife and her mother felt scared but I
didn’t feel scared….I told them we will do surgery for the
child. “Wifeum avanga amavundhan bayandhu
azhudhanga, yennaku bayam edhuvm illa, operation
panni seri pannidalamunnu sonnaen”
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Mr. Mani: I have seen an old lady with the same deformity in my
village….. She never underwent any surgery and is 85 years old
now. “Naan en graamathila idhe udan madhiri oru pattiyai
paarthirukkiren. Avar endha aruvai sigichai
pettrukkollavillai avaragalukku ippozhudhu enbathi
aindhu vayadhu aagiradhu””
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Mrs. Kamala: Everyone told me to kill the child with
poison. “Ellarum sonnanga visham vachu
saavadichudu”
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Mr. Dharmaraj: I felt really bad and I started crying….the nurse
consoled me saying that it is very common nowadays…. it can
be taken care of. “Enaku romba kashatama irundhudu
azhudhute irundhen, apparam nurse sonanga ippo
idhellam romba saadharanam, sari pannidalam”
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Mrs. Radha: I don’t know exactly but gene may be
the cause for this problem. “Yennaku yennanu
solla theriyala, yaedho “gene” prachanainu
ninaikuraen”
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Ms. Kalyani: For the second child we went for
scanning…but they didn’t tell whether the baby had cleft or
not… so we were scared. “Scan panni parthom, adhula
onnum theraiyala adhanala romba bayama
irundhadhu”
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Mr. Vigneshan: When my child grows up no one from within
my relatives will be willing to marry her; so there may be
problems in her marriage. “Enn kozhandha
valandhudhuna enga sondhathula yarume kalyanam
pannikka mattanga, adhanala aval kalyanathula
prachana varalam”
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Indigenous feeding cup “Paaladai”
Mrs. Yamini: My child was not able to take breast
milk…..after birth every child takes their mother’s milk but
my child couldn’t……it made me feel bad.
“Matha kuzhandai madhiri en kuzhandaiyala thai pal
kudika mudiyala. Adhanala enaku romba kashtama
irundhudu”
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 Focus Group Discussion and Qualitative Analysis
 Retrospective data
 Analysis of discussion
 Role of health care workers
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Experience of having a
child with CLP
•Shock and
disappointment.
•Neutral reaction
•Mixed reaction.
Fear of conceiving the
second child
Perception of cause of
cleft
•Self and society
perception.
•Environmental factor
•Influence of hereditary.
•Influence of super
natural powers.
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Previous knowledge
with cleft
•Seen or heard about
cleft.
•Positive family
history.
•Difference in facing
the situation because
of previous
experience.
Acceptance of the
child by parents
•Denial and rejection.
•Mixed reaction.
Feeding the child
Problems associated
with feeding.
•Breast feeding.
•Assistive materials
used (spoon, bottle,
etc).
•Nasal regurgitation.
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Reaction and
acceptance of the
family members
•Overall
acceptance of the
family members.
•Stigma/ taboo
attached in the
society.
•Support from the
family members.
•Impact on
siblings.
Facial
appearance
•Concern for facial
appearance.
•Difference
between a female
child and a male
child.
•Malnutrition.
Support from
health care
professionals
•Overall help and
assurance from
the health care
professionals.
•Negligence and
lack of education
of the health care
professionals.
•Sharing similar
experience with
other parents of
children with
cleft lip and
palate
Suggestions from
the parents
•Use of media for
awareness.
•Financial
assistance for
education
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28.
 The study will help us to know the various concerns of
the parents.
 Using this information we hope to generate awareness
and information on how to address parental queries
to help them overcome when faced with this difficult
occurrence.
 Further the CBR workers who are in regular contact
with this population can be educated about the needs of
these patients for effective rehabilitation.
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Research and focus group questions
Research question 1: Initial reaction and acceptance
Focus group questions:
Describe your experiences of having a child with CLP.
How did it feel when you saw your child for the first time?
Research question 2: Reaction and acceptance of the family members
Focus group questions:
Describe the reaction of the family members after the birth of the child? How cooperative are the family
members and other members of the society?
Do you think the birth of your child with cleft lip/ palate is going to have a negative impact on his / her
sibling?
Research question 3: Previous knowledge about cleft
Focus group questions:
Had you ever seen someone with cleft before this child?
Research question 4: Perception of cause of cleft
Focus group questions:
What do you feel can be the reason for the cleft of your child?
What have others told you about the cause of the cleft?
Were you afraid to conceive because you felt the second child may also have the same disorder?
Research question 5: Impact of facial appearance
Focus group questions:
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 What bothers you most about your child?
 Does the facial appearance of your child worry you? Was there any is difference
perceived facial for a female cleft child opposed to a male child?
 Research question 6: Feeding the child:
 Focus group questions:
 What were the problems faced by you to feed your child?
 Did you breast feed/ bottle feed the baby and why?
 Did you feel your baby lost weight because of malnutrition?
 What did you do when food escaped through your child’s nose?
 Apart from these issues is there anything else that you want to speak
about or add on to the discussion.
 THANK YOU FOR YOUR PARTICIPATION
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31.
 Johansson, B., & Ringsberg, K. C., (2004). Parents' experiences of having a
child with cleft lip and palate. Journal Advanced Nursing, 47 (2), 165-173.
 Krueger, R. A. (1994). Focus groups (2nd). Thousand Oaks, CA: Sage
Publications, Inc.
 Moss, L. & Goldstein, M. (1979). The Recall Method in Social Surveys.
Institute of Education, University of London, London.
 Nagarajan, R., Savitha, V. H., & Subramaniyan, B. (2009). Communication
disorders in individuals with cleft lip and palate: An overview. Indian
Journal of Plastic Surgery Supplement, 42 (1), 137- 143.
 Rao, T. S. S., Asha, M. R., Sambamurthy, K., & Rao, K. S. J. (2009).
Consanguinity: Still a challenge. Indian Journal of Psychiatry. 51(1), 3–5.
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32.
 Theorell, T., Blomkvist, V., Lindh, G., & Evengard, B. (1999). Critical life events,
infections and symptoms during the year preceding chronic fatigue syndrome
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Psychosomatic Medicine, 61, 304–310.
 Torbjornsson, C. B., Michelsen, H., & Kilbom, A. (1999). Method for retrospective
collection of work-related psychosocial risk factors for musculoskeletal disorders:
Reability and aggregation. Journal of Occupational Health and Psychology 4 (3),
193–206.
 Weatherley-White, R. C. A., Eiserman, W., Beddoe, M., & Vanderberg, R. (2004).
Perceptions, expectation, and reaction to cleft lip and palate surgery in native
population: a pilot study in rural India. Cleft Palate Craniofacial Journal, 42 (5),
560–564.
 Wyszynski, D. F. (2001). Cleft lip and palate: from origin to treatment. England:
Oxford University Press.
 Young, J. L., O’Riordan, M., Goldstein, J. A., & Robin, N. H. (2001). What
information do parents of newborns with cleft lip, palate, or both want to know?
Cleft Palate Craniofacial Journal, 38 (1), 55–58.
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33.
 Mr. P.SUBRAMANIYAM
Consultant (PHN), Former World Bank Consultant
(PHN) and Director, DANIDA Health Care & FW
Project, Govt. of Tamil Nadu (HOD).
 Transforming Faces Worldwide.
 All Staff and Faculties of SRIHER, Chennai.
 Parents and aganwadi workers.
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34.
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35.
THANK YOU
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