Veronica Castillo
ISED 797
12/05/12
The attitudes, experiences, quality of life perceptions of a
Mayan family and their son with Cleft Lip and Palate
INTRODUCTION
Alex Lechtman, M.D., volunteers his time and skills to provide life-changing facial
surgery for children, who are from Mayan and Incan descent, in Mexico In “To Mexico with
love: Visalia Surgeon Helps Restore Faces and Futures,” (2012) it describes children with Cleft
Lip and Palate are treated because of their condition. “These children are often shunned in
society because of the birth defect-which some consider a curse”. Ideally, individuals with
disabilities (physical, cognitive, intellectual, etc.) should be able to live and learn as any other
member of the society. Unfortunately, that is not the case in many parts of the world, especially
in underdeveloped countries where they might lack education and resources to improve their
quality of life. In these underdeveloped countries, there is a tendency towards social withdrawal
and inhibitions found in individuals with CLP, that carries on to adolescence, and even
adulthood. This is pernicious to these children with CLP because social withdraw and inhibitions
can become can become an impediment in developing meaningful social relationships (Ascoli,
M. & Loh, J., 2011). Surprisingly, the family of the child with CLP will also experience the
stigma attached to their child, especially in a culture where there is a lack of education,
treatment, and therapy for CLP (Ascoli, M. et al., 2011).
In August of 2011, I assisted a Speech-Language Pathologist at a Special
Education school, Nueva Vida (New LIfe), in a rural Mayan village called Santa Maria de Jesus.
During my time there, I heard countless stories and experiences of families of children with
disabilities who presumed that that their child was a result and punishment of their sins. Because
of, this experience and as a future Speech-Language Pathologist, I find it valuable to hear, learn,
research from a Mayan family's experience in raising a son with CLP in Santa Maria de Jesus.
Chan mentions that the attitudes of patients, their families and the community they live in,
towards CLP are also crucial in the treatment outcomes and the social and emotional
development of these patients. Experientially, knowing that the Mayan culture holds a negative
attitude towards children who have CLP, and that their perceptions could potentially affect the
outcome of treatment urges me to extract their life experiences in the form of research.
Research Question
In this ethnographic case-study, I will conduct a thorough interview,
questionnaire, and observe a Mayan family living in the village of Santa Maria de Jesus.
Additionally, I will examine how their cultural background and perspective influence their
experience raising their son, now young adult, with CLP. I will also conduct an interview,
questionnaire, and observe the young man’s experience of living with CLP. It is assumed that the
descriptive information of both interviews will reflect the knowledge of culture influences,
perceptions, attitudes, experiences, and quality of life of the individuals with CLP and the family
as well.
II. Justification
Unfortunately, there is a paucity of research done on the perspective, attitudes, and
experiences of Mayan families with children with disabilities. A better understanding of CLP
patients and their families from varying cultures can improve future efforts to help similar
patients who are facing culturally based stigmas (Ascoli et al., 2011). Thus, doing research in the
Mayan village could eventually ameliorate children with CLP and their families in the long run.
Furthermore, the proposed study will provide additional insight to professionals, such as SpeechLanguage Pathologists, working with families from the Mayan culture. It will also yield
information on the relationship between the influence culture can have towards families and their
children with disabilities. Specifically for Speech-Language Pathologists, ethnographic and
sociolinguistic analysis expands our understanding of an individual's communication history,
language profile, and psycholinguistic processing (Ball, 2005; Centeno, 2007). Along with that it
also has particular significance in our increasingly diverse clinical caseloads.
Families often hide their family members with disabilities, or overprotect them for fear of
what other people will say about their disabled family member. Because of this, there is little
information on the number of people with disabilities in Mayan culture (multicsd.org), let alone
their perspective on attitudes towards people with CLP and other disabilities. Further research is
needed to fully understand the Mayan culture and its attitudes and perspectives on disabilities
and how the effect it can have towards the quality of life the family and individual with CLP.
Operational Definitions
Cleft Lip and Palate (CLP)
According the Free Online Medical Dictionary, Thesaurus and Encyclopedia, a
congenital defect characterized by a fissure in the midline of the palate, resulting from the failure
of the two sides to fuse during embryonic development. The fissure may be complete, extending
through both the hard and soft palates into the nasal cavities, or it may show any degree of
incomplete or partial cleft. The condition, which occurs approximately once in every 2500 live
births and affects females more than males, is often associated with a cleft in the upper lip.
Together these abnormalities are the most common of the craniofacial malformations, accounting
for half of the total number of defects. Care of the child requires a team approach that includes a
plastic surgeon, orthodontist, dentist, nurse, speech and hearing therapists, and social workers.
Long-term postoperative problems, including speech impairment and hearing loss, improper
tooth development and alignment, chronic respiratory and ear infections, and varying levels of
emotional and social maladjustment, may be largely prevented by modern techniques and
reconstructive surgery.
Family with a son with CLP
Will interview and observe a Mayan family (mother and father), living in Santa Maria de
Jesus, with a son with CLP. They speak, both Spanish and their Mayan dialect of Kaqchikel.
Young adult male with CLP
Will interview and observe a 18 year-old male with CLP, living in Santa Maria de Jesus.
He also speaks both Spanish and their Mayan dialect of Kaqchikel.
Quality of Life
According to the Centers for Disease Control and Prevention, quality of life refers to the
physical, mental, and social domains of a person. Key aspects quality of life are culture, values,
and spirituality. It is difficult to measure quality of life because individuals and groups may
define it differently.
Disability
An individual with a disability is a person who: 1) has a physical or mental impairment that
substantially limits one or more major life activities, or 2) has a record of such an impairment, or
3) is regarded as having such an impairment (American Disabilities Act (ADA)
Mayan culture
The Mayan have preserved many aspects of their ancient culture, including their traditional
clothing, folklore, agricultural techniques, family structure, language, and dance. Many elements
of their ancient religions have also survived for centuries under the guise of Catholic religious
observances. Daily life in Mayan regions varies by groups and individuals, with some Mayan
living a more modern way of life, and some living a more traditional, “culturally distinct” way of
life. (www.multicsd.org).
Propositions
Does the Mayan culture strongly influence perceptions and attitudes towards families with
children with CLP that may be more negative than positive, due to a lack of education
and resources? Or, are there other factors to be considered?
Does the Mayan cultural attitudes and perceptions towards individuals with CLP contribute
to the individual being shunned from society, burden to the family, and result in a poor
quality of life? If so, how are some ways this can change?
Statement of Ethical Considerations
The proposed case-study involves extensive interviews and observations on the family
their son with CLP. The parents and son with CLP will have signed a consent form,
understanding and agreeing to the nature and purpose of the study. In addition, they will be
informed that they have a right to withdraw from the study at any time, if necessary.
While each individual’s name will necessarily be used in all observational and interview
records (field notes, logs, audio recorder), these records will be kept in a locked file. The study
will not require any form of deception and the participants will be informed that no one will have
access to their information. No real names will be used in any published material, and any
identifying information will be altered. The potential harm to the family and their son with CLP
is minimal.
Annotated Bibliography
In review of the relevant literature, I discovered a few topics to encompass this research
study. First includes the literature of the Mayan culture, history, customs, and traditions. This
will serve as the foundation of the study, as to provide rich and detailed background information
on the culture of the participants in the study. Second, examining different cultural perspectives,
including the Mayan culture, towards individuals with CLP and other disabilities. Understanding
that culture influences occupation as well as perceptions of health, illness, and disability
(Bonder, Martin, & Miracle, 2004), will produce understanding towards families and individuals
affected by CLP or other disabilies. Third, exploring the impact of CLP on families and
individuals, as well as their personal attitudes and perceptions towards individuals with CLP.
Lastly, explaining the implications for Speech-Language Pathologist's and other related
professionals working with patients/clients from the Mayan culture. There are three important
characteristics that therapists can cultivate to enhance clinical encounters: careful attention,
active curiosity, and self-reflection (Bonder et al., 2004). Embedding these characteristics in a
professional's understanding of how culture can influence perspectives on individuals with
disabilities, can result in a more positive interaction for the professional, family and individual
with CLP.
Mayan history, culture, customs, and traditions
Rogoff, B., Pérez González, C., Chavajay Quiacaín, C., & Chavajay Quiacaín, J. (2011).
Developing Destinies: A Mayan Midwife and Town. New York: Oxford University Press.
Retrieved from http://site.ebrary.com/id/10472235
A book that describes the life of a sacred midwife, Chona Perez, in a rural Guatemalan town.
It narrates the story of this woman and reveals examples of how cultural practices are preserved
even as they are consistently changing. Rogoff demonstrates that importance of understanding a
culture by also understanding their cultural practices. This book accounts for Mayan family life,
birth, learning, and child development.
Fischer, E. F. (2001). Cultural logics and global economies : Maya identity in thought and
practice. Austin: University of Texas Press.
The authors have brought together essays by virtually all the leading U.S. experts on
contemporary Maya communities and the top Mayan scholars working in Guatemala today.
Supplementing scholarly analysis of Mayan cultural activism is a position statement originating
within the movement and more wide-ranging and personal reflections by anthropologists and
linguists who have worked with the Mayan over the years. Among the broader issues that come
in for examination are the complex relations between U.S. Mayanists and the Mayan cultural
movement, efforts to promote literacy in Mayan languages, the significance of woven textiles
and native dress, the relations between language and national identity, and the cultural meanings
that the present-day Mayan have encountered in ancient Mayan texts and hieroglyphic writing.
Gaskins, S. (1999). Children's daily lives in a Mayan village: A case study of culturally
constructed
roles and activities. In A. Goncu (Ed.) , Children's engagement in the world:
Sociocultural
perspectives (pp. 25-60). New York, NY US: Cambridge University Press.
This study describes three cultural principles of engagements for young Mayan children
and extensive observations of Mayan children engaged in everyday activities. The principles are
primacy of adult work activities, importance of parental cultural beliefs in structuring the
children's activities, and independence of Mayan children's motivation. These three principles
were used to interpret four different categories of activities in which Mayan children engage:
maintenance activities, social orientation, play, and work. This will provide additional cultural
information and expected roles of typically-developing children.
Cultural perspectives towards CLP
Ascoli, M. & Loh, J. (2011). Cross-cultural attitudes and perceptions towards cleft lip and palate
deformities. World Association of Cultural Psychiatry, 127–134.
Physical attractiveness is highly regarded in many societies. CLP deformities have a global
prevalence of up to 1 in 500 live births worldwide. Individuals with CLP face a myriad of
problems in life including discrimination and prejudice. The cultural background of the different
communities these individuals belong seems to have an impact on the type of treatment they
receive. They compare and discuss the cultural attitudes, perceptions and approaches of CLP
individuals, their families and peers in the Chinese, Africans and Indians. The perceived causes
for CLP range from the Divine and evil spirits to astrology and diets. Traditional healers unique
to each community are often involved in the management of the CLP, instead of Western
medicine. The motivations in seeking treatment include increasing the chances of getting a
proper education and finding a spouse. There is a lack of well-controlled research and good
evidence in our current knowledge of the relationships between CLP treatments and the
influence of cultural perceptions.
Bonder, B. R., Martin, L., & Miracle, A. W. (2004). Culture emergent in occupation. American
Journal
of Occupational Therapy, 58, 159–168.
This study will provide awareness for the therapists of the need to address culture in
interventions. However, definitions of culture can be unclear, providing little guidance to
therapists about how to recognize its effects in therapeutic encounters. A pragmatic definition of
culture as emergent in everyday interactions of individuals encourages reconsideration of the
main elements of culture, that it is learned, shared, patterned, evaluative, and persistent but
changeable. Understanding of culture as emergent in interaction, including therapeutic
intervention is crucial.
CLP: Impact on families with children and individuals with CLP
Zeytinoglu, S., & Davey, M. P. (2012). It’s a privilege to smile: Impact of cleft lip and palate on
families. Families, Systems, & Health, 30(3), 265–277. doi:10.1037/a0028961
In this article we describe prior cross-sectional and longitudinal research conducted with
children who were born with cleft lip and/or palate and their families in the United States and
internationally. The findings and clinical implications from different times and cultures are
synthesized using the Biopsychosocial Model. The study's primary aim is to summarize the
attachment styles, cognitive, psychological and social functioning, self-concept, neurological
functioning, and speech difficulties prevalent among individuals who are born with cleft
lip/palate at different developmental stages (e.g.,
infancy, toddler, childhood, adolescence). Additionally, bystander reactions to the speech and
appearance of individuals coping with cleft lip and/or palates from prior clinical research and
provide clinical recommendations for more collaborative family-based practice among medical
and mental health providers treating families coping with cleft lip and/or palate.
Black JD, Girotto JA, Chapman KE, Oppenheimer AJ. When my child was born: cross-cultural
reactions to the birth of a child with cleft lip and/or palate. The Cleft palate-craniofacial
Journal,
46: 545-548, 2009
The objective of this study was to compare across cultures the maternal reactions toward
the birth of children with cleft lip and/or palate. An adaptation of When My Child Was Born, a
Likert-type scale designed to assess reactions to the birth of a child, was used to survey the target
populations. The surveys were administered between February 2006 and February 2008 at four
hospitals: the Faculty of Medicine Hospital, Chiang Mai, Thailand; Sappasitprasong Hospital,
Ubon Ratchathani, Thailand; the No. 5 Affiliated Hospital to Xinjiang Medical College, Urumqi,
China; and Santa Monica Hospital, Pereira, Colombia. The biological mothers completed the
survey. A historical cohort of American mothers was used for comparison. The primary study
outcome measure was the mean maternal affect score, which was calculated from the individual
responses of study participants. Maternal reactions to the birth of cleft children are different
across cultures.
Goddard, J., Lehr, R., & Lapadat, J. (2000). Parents of Children with Disabilities: Telling a
Different Story. Canadian Journal of Counselling, 34(4), 273–289.
This study explored a deconstructed view of disability with parents of children with
disabilities. The study analyzed stories collected in open-ended focus groups using criteria
derived from constructivist principles of narrative therapy. A thematic analysis, grounded in a
critical constructivist perspective, yielded four thematic categories: stories about other people's
assumptions, stories about dealing with difference, stories about professionals, and stories about
disability. These parents' narratives define and deconstruct the dominant discourse about being
the parent of a child with disabilities and reveal insights about the impact of stereotypic views of
disability. Implications for counselling parents
in ways that honour their insights are discussed.
Hunt, O., Burden, D., Hepper, P., Stevenson, M., & Johnston, C. (2007). Parent Reports of the
Psychosocial Functioning of Children With Cleft Lip and/or Palate. The Cleft PalateCraniofacial Journal, 44(3), 304–311. doi:10.1597/05-205
The purpose of this study was to determine the opinion of parents regarding the
psychosocial functioning of their child with cleft lip and/or palate (CLP); (2) to identify
predictors of psychosocial functioning; and (3) to determine the level of agreement between
children with CLP and their parents. The participants of the study were, one hundred twenty-nine
parents of children with CLP and 96 parents of children without CLP participated in this crosssectional study. Parental opinion of the child's self-esteem, anxiety, happiness, and problems
caused by facial appearance were assessed using visual analogue scales. Parents completed the
Child Behavior Checklist and were interviewed. The study concluded that the parents of children
with CLP reported various psychosocial problems among their children. Parents considered
children who had been teased to have greater psychosocial problems.
Implications for Speech-Language Pathologist's and other professionals
Bebout, L., & Arthur, B. (1992). Cross-Cultural Attitudes Toward Speech Disorders -- Bebout
and Arthur 35 (1): 45 -- Journal of Speech and Hearing Research. Journal of Speech, Language,
and Hearing Research, 35, 45–52.
Speech-language pathologists serving multicultural populations may encounter unfamiliar
beliefs about speech disorders among the members of different cultures. This study used a
questionnaire to look at attitudes toward four disorders (cleft palate, dysfluency, hearing
impairment, and misarticulations) among 166 university students representing English-speaking
North American culture and several other cultures (e.g., Chinese, Southeast Asian, Hispanic).
The results showed significant group differences on items involving the subjects' beliefs about
the emotional health of persons with speech disorders and about the potential ability of speechdisordered persons to change their own speech.
Procedures
The case-study research study will take place over a two-week period during the summer
of 2013. The study will consist of traveling to the village of Santa Maria de Jesus in Guatemala
and interviewing the family and their son with CLP. During the beginning of the study, I will
have the parent's complete the Support Evaluation List-Short Form (ISEL-SF; Pierce et al., 1996)
and have their son with CLP complete the Youth Quality of Life-Facial Differences (YQOLFD). After both parties have completed the questionnaires, I will take an audio record and take
daily field notes on the participant’s interviews and observation in their household and
surrounding areas (village plaza, market, etc.). At the end of the interview and observation
period, I will have a good picture of a few things:
the attitudes, perceptions, and experiences of the family and individual affected with
CLP
descriptive information of what quality of life entails for their family and their son
affected with CLP and what it currently looks like
how the families cultural background has affected their perspective on their child
how their community has responded to their unique needs, both for the family and
their son with CLP
I will also keep a field journal, as to having a running log on any personal bias, feelings,
opinions, and perceptions about the participant's and their stories. I will keep a field log when
collecting my data, as to have a running account on how I plan to spend my time compared to
how I actually spent it. Additionally, I will use a recording device, as to have access to
interviews after the two-week period duration.
Population and Sample
The sample will consist of one family (mother and father) and their son with CLP, of 18
years-old. The family is of Mayan descent and live in a rural Mayan village, Santa Maria de
Jesus, in Guatemala. Santa Maria de Jesus is located on a side of a volcano on the outskirts of
Antigua, a populated tourist town. They speak Spanish and a Mayan dialect called Kaqchikel.
Instrumentation
My data will be gathered using a list of guided questions to lead the interview into a
natural-flowing conversation, field journal, field log, recording device, and two different
questionnaires to both the parents and the individual with CLP. I will be the only data collector.
My field journal, log and recording device will provide accurate qualitative account of the
participant’s attitudes, perceptions, and experience with CLP. Throughout the two-weeks of data
collection, I will review my journals and recorded audio, as a way to analyze further topics of
discussion and question to be asked in following interviews. I will then transcribe the interviews
and observations that will later be coded to determine common themes throughout study. A
sample of interview questions (APPENDIX A) for the parents, and a separate set of interview
questions (APPENDIX B) for the individual with CLP have been created by the researcher. In
addition to incorporating the interviews and observation, I will have the parent's complete the
ISEL-SF and have their son complete the YQOL-FD.
The parent's social support will be measured using the ISEL-SF and it is a 15-item
measure of the perceived availability of social support. In addition to providing an overall score,
it has three sub-scales that measure (1) appraisal support, which assesses the perceived
availability of confidants to talk to about one’s difficulties; (2) belonging support, which
examines the availability of people with whom one can do things; and (3) tangible support,
which refers to the availability of practical or instrumental help. Participants rate how true or
false each statement is for them on a 4-point scale ranging from 1 = completely false to 5 =
completely true. Higher scores indicate greater appraisal, belonging, and tangible support. To
measure the quality of life for the individual born with CLP will I will be using the Youth Quality
of Life-Facial Differences (YQOL-FD), which is also available in 'Mexican Spanish'. YQOL-FD
is a measure designed to assess the Quality of Life of youth with both acquired and congenital
cranio-facial conditions.
Validity
As it is a case-study, the experiences of this one family in the Mayan culture will not
reflect the exact experiences for every family with a child with CLP in the Mayan culture.
However, I do believe that there might be common themes and shared experiences of Mayan
families with children with CLP and other disabilities. The data gathered will be most nearly
applicable to gaining knowledge of improving best practice when serving families and
individuals with CLP from the Mayan culture living in Santa Maria de Jesus. However, similar
experiences might be demonstrated in other cultures where education, resources for Special
Education, and other related services are limited and sometimes non-existent. People with all
types of disabilites are vastly overrepresented among the world’s poorest of the poor. Even in
wealthy countries, people with an intellectual disability and their families are much more likely
to be poor than the general population (Canadian Association for Community Living & Inclusion
International, 2006).
I hope this study will lend a new perspective to not only Speech-Language Pathologist's,
but to teachers and other related service providers, as to become more curious, sensitive, and
informed towards different cultures, including the Mayan culture. Additionally, I hope this study
encourages professionals to be aware of their own personal bias towards individual's from
different ethnic backgrounds. If additional time was an option and unlimited resources were
available to conduct this study, I would interview all of the families and individuals with various
types of disabilities, including CLP, living in Santa Maria de Jesus. Thus, this would provide
more reliable data on the perspectives and attitudes of the Mayan culture as a whole, would
increase the validity of the study, and the data would be generalizable.
Ethnographic researchers conducting case studies typically live and work in the
community of interest for six months to a year or even longer to internalize basic beliefs, fears,
hopes, and expectations of the people they are studying (Fraenkel, Wallen, & Hyun, 2011). This
will be a limitation considering that I will be conducting the study over a two-week period. More
time would be beneficial if I had additional resources. A large threat to validity will be that of
instrumentation, specifically, data collector bias, as the interview questions are created by the
researcher and subjective judgments will be an unavoidable part of the data analysis. The
numerical data provided by the two questionnaires, ISEL-SF and YQOL-FD, will provide
quantitative data. This will lend a more objective perspective for the attitudes and perceptions of
the parents and son with CLP. Observer bias is almost impossible to eliminate; however, the
researcher will use their field logs as a reference to point out any bias that may arise throughout
the study.
It is important to be mindful when approaching a Maya family about the topic of
disability as it differs quite significantly from US culture. Because disability is thought of as loss
of the soul and/or punishment by the Maya gods, families may not be as willing or forthcoming
when speaking about it with you (multi-csd.org). Potentially, mortality could be a threat to the
study, as the family might not be as forthcoming with their personal experiences. Lastly, location
might be a threat to the study. Data results may be altered if done in a public sector of the village,
in comparison to the privacy of their own home. I will ensure that the interviews will be
conducted in a private and secure location, where information will be kept confidential. To
ameliorate transferability in this study, the researcher will provide descriptive details of the
participants, the parents and their son with CLP, as to generalize the results to other families and
individual's from the Mayan culture.
Projected Data Analysis Procedures
Qualitative Data
Some of the data reduction strategies that I would use would be using coding for my
interview transcripts, field notes, researcher memos (metadata) and, narrative products. Utilizing
this procedure would break down the data into discrete parts and examined for similarities and
differences. Thus, grouping similar findings into grouped categories. After conducting the above
stated data reduction strategies, I would utilize memoing as a form of analyzing my data. This
would consist of writing comments in the margins as a form of coding to begin identify concepts.
I would then establish triangulation as it also provides validity for the study (Fraenkel et al.,
2011) I would utilize triangulation to verify the accounts and narratives between the parents and
the son with CLP. This could confirm personal accounts from both parties. Triangulation will
also be used with the questionnaire and interviews/observation. The researcher would compare
the results of the questionnaire with the data collected from the interviews and observations, as to
verify the different sources of information. I would also expect to find patterns throughout the
study in the ways that people think and behave (Fraenkel, et al., 2011). I would analyze the data
by comparing and contrasting the results and as new observations arise, I would compare them
with prior interviews and observations. Analyzing key events will also be helpful in analyzing
my data because it would help the researcher explain the culture of the group to others
(Franenkel, et al., 2011). Lastly, I would presume that crystallization would occur. After gaining
information and forming thoughts about the study, I would hope it would provide some insight
into not only the family's attitudes, experiences and quality of life perceptions, but also insight
into the Mayan culture.
In this study, I would consult my department professors, Drs. Laura Epstein and Betty
Yu. Laura Epstein is a professor for the Communication Disorders Program at SFSU and
emphasizes in bilingual/multicultural language assessment, literacy and language and processes
of clinical interaction. Dr. Epstein is the recipient of the 2011 state-wide California Speech and
Hearing Association (CSHA) Diversity Award. Betty Yu is also a professor for the
Communication Disorders Program at SFSU. She is interested in examining how language
development interfaces with sociocultural competence and has conducted research on the
communication experiences of children with autism spectrum disorders growing up in bilingual
and minority-language families.
Quantitative Data
The parents will be completing the ISEL-SF, and this questionnaire will use a scale score
that is constructed by assigning each response with a numerical value, then adding up all of the
numerical values assigned and that would result in a number between 0 and 36. A lower score
would mean that the parents believe they have a less social support available in their life. The
test also explains that when talking to parents about this tool, the researcher needs to use it to talk
about what they may want to explore for supports. Are there parent groups available in your county?
What are the barriers to social support for this parent? (“Home Visiting Forms and Brochures,”
n.d.) The YQOL-S is designed for monitoring leading indicators of Quality of Life in adolescent
populations, and is not scored by domain, as each question is regarded as a social indicator in
itself. To score the YQOL-FD, the scores are transformed to a 0-100 scale for easy
interpretability, higher scores indicating better Quality of Life. The YQOL-DF is designed for
monitoring leading indicators of Quality of Life in adolescent populations, and is not scored by
domain, as each question is regarded as a social indicator in itself.
Expected Findings and Recommendations
This ethnographic case-study seeks to discover the attitudes, experiences, and quality of
life perceptions of a Mayan family and their son with CLP. In this study, I expect to have a
deeper understanding of how specific cultural Mayan perspectives, towards people with CLP,
directly affects the family with a son CLP. Similarly, I expect to gain further insight of the
quality of life of their son, with CLP, and how it is affected by Mayan cultural perspectives
towards individuals with CLP. Furthermore, I presume that the results of this study will be
comparable to those of other cultures from similar backgrounds; with limited education,
resources, treatment, and services for therapy.
Possible suggestions for future research not covered by my study would be how poverty
affects the treatment and quality of life for a family with a child with a CLP and additional
disabilities. An informative research option would be to conduct a quantitative study of
individuals with CLP from the Mayan culture by utilizing a questionnaire that measures their
quality of life, pre-surgery and post-surgery. Additionally, conducting interviews post-surgery
that investigate any difference in the treatment or perception from individual's in their
community. Some important research questions related to my topic that are worthy to investigate
would be to investigate perceptions of other indigenous cultures and how they respond to people
with CLP and other disabilities. It would be interesting to compare and contrast the themes and
topics that would arise among similar cultures.
Lastly, a vital research question that would
be worthy to investigate would be various ways Speech-Language Pathologist's, and other
professionals, would be able to be involved in international programs where education,
resources, and services are provided to individuals with CLP and their families where these
amenities are non-existent.
References
American Disabilities Act (ADA) Home Page - ada.gov - Information and Technical Assistance
on the Americans with Disabilities Act. (n.d.). Retrieved December 1, 2012, from
http://www.ada.gov/
Ascoli, M., Loh, J., (2011). Cross-cultural attitudes and perceptions towards cleft lip and palate
deformities. World Association of Cultural Psychiatry. 127-134.
Bonder, B., Martin, L., & Miracle, A. (2004). Culture Emergent in Occupation. The American
Journal
of Occupational Therapy, 58(2).
Canadian Association for Community Living, & Inclusion International. (2006). Hear our
voices : a global report : people with an intellectual disability and their families speak
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Appendix (A)
Interview questions for the Family; Stress, Support, and Perception of CLP
1. Tell me about your experience in raising your child with CLP.
a. Have you faced any success or challenges?
2. Who do you turn to for support? (e.g. self, partner, siblings, parents, friend, child, work
colleague, professionals, other mothers).)
3. How stressful is this issue for you? - Rated on a scale from 0 (Not
stressful) to 4 (Extremely stressful)
4. What would you like to see change that would make this experience
easier for you and for other children with special needs?
5. How does your culture view individual's with disabilities?
6. Have your perceptions on people with CLP or disabilities been altered?
7. What was your reaction when you first found out that your child had CLP?
Appendix (B)
Interview Questions for son with CLP; Stress, Support, and Perception of Disability
1. Tell me about your experience in growing up with CLP.
a. Have you faced any successes or challenges?
2. Who do you turn to for support? (e.g. self, partner, siblings, parents, friend, child, work
colleague, professionals)
3. How stressful is this issue for you? - Rated on a scale from 0 (Not
stressful) to 4 (Extremely stressful)
4. What key events in your life were monumental in being comfortable with having CLP?
5. How does your culture view individual's with CLP?
6. Have do you view yourself? Was it different when you were younger?
7. How have your parents responded to you, in regards to having CLP?