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  2. 2. 1/26/2023 2
  3. 3. 1/26/2023 3
  4. 4.  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. 1/26/2023 4
  5. 5. 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. 1/26/2023 5
  6. 6.  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. 1/26/2023 6
  7. 7. 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 1/26/2023 7
  8. 8. 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 1/26/2023 8
  9. 9.  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. 1/26/2023 9
  10. 10.  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.  1/26/2023 10
  11. 11.  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. 1/26/2023 11
  12. 12.  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. 1/26/2023 12
  13. 13.  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. 1/26/2023 13
  14. 14. 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 1/26/2023 14
  15. 15.  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” 1/26/2023 15
  16. 16. 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” 1/26/2023 16
  17. 17. 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”” 1/26/2023 17
  18. 18. Mrs. Kamala: Everyone told me to kill the child with poison. “Ellarum sonnanga visham vachu saavadichudu” 1/26/2023 18
  19. 19. 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” 1/26/2023 19
  20. 20. Mrs. Radha: I don’t know exactly but gene may be the cause for this problem. “Yennaku yennanu solla theriyala, yaedho “gene” prachanainu ninaikuraen” 1/26/2023 20
  21. 21. 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” 1/26/2023 21
  22. 22. 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” 1/26/2023 22
  23. 23. 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” 1/26/2023 23
  24. 24.  Focus Group Discussion and Qualitative Analysis  Retrospective data  Analysis of discussion  Role of health care workers 1/26/2023 24
  25. 25. 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. 1/26/2023 25
  26. 26. 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. 1/26/2023 26
  27. 27. 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 1/26/2023 27
  28. 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. 1/26/2023 28
  29. 29. 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: 1/26/2023 29
  30. 30.  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 1/26/2023 30
  31. 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. 1/26/2023 31
  32. 32.  Theorell, T., Blomkvist, V., Lindh, G., & Evengard, B. (1999). Critical life events, infections and symptoms during the year preceding chronic fatigue syndrome (CFS): An examination of CFS patients and subjects with non-specific life crisis. 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. 1/26/2023 32
  33. 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. 1/26/2023 33
  34. 34. 1/26/2023 34
  35. 35. THANK YOU 1/26/2023 35