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PHYS THER
Vol. 81, No. 9, September 2001, pp. 1512-1523
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Research Reports

Sociocultural Influences on Disability Status in Puerto Rican Children

Mary E Gannotti, W Penn Handwerker, Nora Ellen Groce and Cynthia Cruz

ME Gannotti, PT, PhD, is Research Fellow, Department of Pediatrics, Yale Center for Children With Special Health Care Needs, School of Medicine, Yale University, New Haven, Conn, and Assistant Professor of Physical Therapy, Physical Therapy Program, University of Hartford, West Hartford, Conn. This research was performed to fulfill the requirements for her doctoral degree in anthropology at the University of Connecticut.
WP Handwerker, PhD, is Professor of Anthropology, Medical Anthropology Program, University of Connecticut, Storrs, Conn
NE Groce, PhD, is Associate Professor, Department of Epidemiology and Public Health, Program in International Health, School of Medicine, Yale University
C Cruz, PT, MPH, is Assistant Professor of Physical Therapy, Physical Therapy Program, University of Puerto Rico, Medical Sciences Campus, San Juan, Puerto Rico

Address all correspondence to Dr Gannotti at Physical Therapy Program, University of Hartford, 200 Bloomfield Ave, West Hartford, CT 06117 (USA) (gannotti{at}mail.hartford.edu)


Submitted May 22, 2000; Accepted March 13, 2001


   Abstract
 
Background and Purpose. This article describes culturally defined meanings of childhood function and disability in Puerto Rico to provide a context for the interpretation of test scores from the Spanish translation of the Pediatric Evaluation of Disability Inventory (PEDI). Subjects and Methods. More than 600 Puerto Rican teachers, parents and caregivers of children with and without disabilities, and members of the general community participated in ethnographic interviews, which were designed to describe their beliefs, attitudes, and knowledge about childhood function and disability. Results. Qualitative and quantitative data analysis confirmed that differences exist between Puerto Ricans and the norms established in the United States for the performance of functional skills by children, and the analysis also described Puerto Rican beliefs and attitudes toward disability. Discussion and Conclusion. Puerto Rican values of interdependence, añoñar (pampering or nurturing behaviors), and sobre protectiva (overprotectiveness) influence parental expectations for the capability of children with disabilities and should be considered when interpreting scores from the PEDI and establishing plans of care. Additional research is needed on the influence of contextual variables on child development and behavioral adaptations to disability.

Key Words: Culture • Pediatric disability • Puerto Rico


   Introduction
Top
 Abstract
 Introduction
Method
 Results
 Discussion and Conclusion
 References
 
Disablement models require physical therapists to consider the social and physical environment in which people function.1,2 This adds another layer of complexity to the examination process, because practitioners must understand the ecosystem—the social values, socially defined roles, patterns of behaviors, attitudes toward people with disabilities, and physical surroundings—in which their patients function.3–6 Variation in these factors exist across different cultural groups and may have implications for how disability is experienced and interpreted.7 Knowledge of contextual factors becomes more relevant when physical therapists use standardized measures that are adapted for use with people from ethnic and minority groups. More and more, physical therapists are required to justify interventions and establish guidelines for best practice. Standardized measures are tools needed for these tasks. Understanding the social and cultural context in which disability occurs is important for proper interpretation of the scores from these measures.

The Pediatric Evaluation of Disability Inventory8 (PEDI) evaluates the functional skill performance and capability of children between the ages of 6 months and 7.5 years. It consists of 2 scales: the Functional Skill Scale and the Caregiver Assistance Scale. The Functional Skills Scale measures a child's ability to perform 197 skills in the areas of self-care, mobility, and social function. The Caregiver Assistance Scale measures a child's level of independence in the same 3 domains. The PEDI has been translated into Spanish, and its content validity and construct validity have been established for use with children living in Puerto Rico.9 Yet, proper interpretation of the PEDI scores for Puerto Rican children requires more information on the environment in which they live.

Children living in Puerto Rico function in a different environment than children living on the mainland. Puerto Ricans face different economic and social problems, they have a different infrastructure that supports health and rehabilitation of children with disabilities, and they hold different social values and beliefs about disability. The island's history of colonization, slavery, and acquisition by the United States in the Spanish-American War contributes to these differences, and, as a result, Puerto Rican society is a blend of influences from the Taíno Indians, Spanish, Africans, and white Americans. The burgeoning economy of pharmaceuticals, sugar, rum, coffee, and tourism make Puerto Rico one of the most industrialized and wealthy islands in the Caribbean,10 and the island attracts immigrants from other islands. More recently, immigrants from Cuba and the Dominican Republic have added their influence to Puerto Rican society.

Despite the successful economic growth and industrialization over the last 50 years, Puerto Rico still has poverty, unemployment, and the social problems that accompany poverty. In the 1990s, the per capita income of Puerto Rican households was only 53% of the income of non-Hispanic whites.10 In addition, the poverty and unemployment rates of Puerto Ricans are among the highest of all the ethnic groups in the United States.10 The island's rates of crime, violence, and drug abuse are also among the highest in the nation.10 In 1991, Puerto Rico ranked second in the nation for overall number of cases of acquired immunodeficiency syndrome (AIDS) and third in the nation for overall number of pediatric AIDS cases.11 Rates of domestic violence, child abuse, and mental illness are also significantly higher than those on the mainland.12

Puerto Rican children comprise 37% of the 3.5 million people living on the island, a substantial portion of the population.9 Poverty, poor housing, violence, and high rates of mental illness in adults place these children at risk for health problems13 and acquired disability (eg, head trauma, lead poisoning, spinal injury). Puerto Ricans also have a higher risk for children with low birth weight than any other Hispanic group and high rates for congenital malformations—especially neural tube defects, and genetic diseases, such as hypothyroidism and abnormal hemoglobins.12 Possible causes for these increased rates are a lack of prenatal care, substance abuse, premature labor, the island's high rate of intermarriage, and poor diet and nutrition.12

Although there are no prevalence rates for the number of children with disabilities on the island, the US Department of Education estimates that at least 4% of all Puerto Rican children enrolled in school have a disabling condition.14 Health care for these children is generally received through the public health care system, because private insurance programs on the island generally do not cover chronic conditions.12 The public health care system includes 4 regional pediatric hospitals, and highly specialized maternal and child health services are available at the University of Puerto Rico Medical School Hospital and the University Medical School Pediatric Hospital in San Juan. Rehabilitation services are provided through the pediatric hospitals, the Department of Education, and private centers and practices. There is a shortage of pediatric rehabilitation professionals on the island, and many children may be on long waiting lists before they receive services.15 Although educational services are mandated by the Individuals With Disabilities Education Act (IDEA), the Department of Education has a similar shortage of qualified professionals and materials, and it lacks accessible buildings and transport services.16–18 Puerto Rican families of children with disabilities with limited resources often engage in a pattern of circular migration between the island and the mainland to meet the medical, rehabilitation, and educational needs of their children as well as for personal and economic reasons.10 Because this migration pattern disrupts the continuity of care, it may be another negative influence on the care of these children.

Perceptions about the capability of children with disabilities is, in part, a reflection of the opportunities and social roles available for adults with disabilities.7 Current programs to encourage independent living and entry into the workforce for adults with developmental disabilities exist through vocational rehabilitation centers throughout the island, the Department of Public Health, and the Department of Social Services. These programs, however, do require more development in order to meet the needs of adults with disabilities.16,17 In the past, these services have been underutilized because families did not view work or independent living as important or even possible for a family member with a disability, because of the family's fear of mistreatment in public, because of a lack of accessible transportation, and because of lack of appropriate services.16,19 Additional education of families and the general public is needed to increase participation in these programs14 and to increase opportunities for adults with disabilities.

Additional contextual variables of interest in this study are the social values and cultural beliefs about health and disability in Puerto Rico. Puerto Rico is a collective society, which is in contrast to the reported individualistic nature of mainstream United States society.20 Values in Puerto Rican society include familialism, allocentrism, simpatía, and a high value on motherhood.21–23 Familialism is a cultural value that involves strong identification with and attachment to one's family and strong feelings of loyalty, reciprocity, and solidarity among family members.21 Allocentrism is an orientation of a person to the needs, objectives, and points of view of the group rather than the individual, and it fosters empathy and the willingness to sacrifice for others.22 Simpatía is a behavior pattern that emphasizes the need for smooth, pleasant social behaviors.21,22 Puerto Rican society places a high value on motherhood, and parenting is an important social role by which people gain respect from others in the community.23–25 Variation in social and cultural beliefs among Puerto Ricans has been attributed to differences in socioeconomic status, differences in region of residence, and level of acculturation.21,26,27

Harwood et al26 described the influence of these cultural values on parental interactions with children. According to these authors, Puerto Rican mothers stress child behaviors that demonstrate respect and affection compared with white American mothers, who place a high value on autonomous behaviors. A child who is bien educado (well educated) in Puerto Rican society understands the importance of interacting with others, especially adults, with respect and dignity.26,28 In contrast, children who are self-assertive, independent, and aggressive are perceived negatively in Puerto Rican society. Other researchers have established that Puerto Rican parents had expectations that the performance of 6 developmental milestones (being fed from a spoon, feeding self with a spoon, smiling at a face, recognizing mother, putting on shoes, and naming colors) would occur later in comparison with the expectations of white American, West Indian, and black American parents.29

The differences in values and behavioral patterns can influence not only the development in children, but the behavioral adaptations and how families cope with a child with a disability. Allocentrism and familialism promote supportive attitudes towards the family member with a disability, although "overprotectiveness" may hinder independence in some instances.29,30 The high value of motherhood and the importance of the role of parenting provides an underlying rationale for accepting and adjusting to the high level of care and long-term dependency of a child with a disability.31 Another attribute of women, which Puerto Rican families perceive as positive, is to aguantar,30 or to endure, and to become passively resigned to their fate as a caregiver of a child with a disability.

Beliefs about health and disability also can play an important role in behavioral adaptations to disability. Puerto Rican beliefs surrounding health include biomedical concepts from Western medicine, folk illnesses, and spiritualism. Folk illnesses include mal ojo (evil eye), susto (fright),28 and empacho (food gets stuck).32 Mal ojo is believed to be caused by excessive admiration or desire on the part of another, and families may believe that it is the reason for an illness or disabling condition. Susto is the result of an emotionally traumatizing experience, and symptoms include loss of strength, loss of weight, and introversion. Empacho is a bolus in the intestines that causes diarrhea and vomiting and is caused by eating greasy or rich foods. Isolation of children, wearing amulets, preventing emotional trauma, and precautions about a child's diet are measures that mothers may take to prevent these illnesses. Parents may also consult the epiritista, a medium who they believe has the power to contact the spirit world, to cure illnesses through potions and prayers.

Although information on beliefs surrounding the causes of disability in Puerto Rican families is lacking, other Hispanic groups believe in spiritual causes ("chosen by God" or "a hex") or folk explanations (eg, the use of scissors during pregnancy leads to a cleft lip).28 Beliefs concerning disability causation may influence how families interact with and how invested they are in a child with a disability. A family's energy and resource expenditure may be limited for children with specific impairments, such as when they are viewed as "God's children/angels" and cared for with the expectation that they will die at an early age33,34 or when they are viewed as "bewitched."35 Groce and Zola7 identified the following 3 key issues to understanding the social implications of childhood disability for a group of people: (1) the perceived causes of disability, (2) the expectations for survival, and (3) the social roles deemed appropriate for children and adults with disabilities. This information, in turn, must be viewed using the values and beliefs surrounding children whose development is typical as a frame of reference.

Culture can be defined as shared knowledge, attitudes, understandings, activities, emotions, and beliefs.36 Understanding the cultural values and beliefs surrounding childhood function and disability in Puerto Rico are necessary to give meaning to, or provide a context for interpreting, test scores from the Spanish translation of the PEDI. The purpose of this article is to identify the cultural meanings (or the shared knowledge, attitudes, and beliefs) of childhood function and disability in Puerto Rico. To gain a greater understanding of typical childhood function, we asked the following questions: (1) What are the expected tasks, roles, and activities of Puerto Rican children between the ages of 6 months and 7.5 years? and (2) What are the attitudes and beliefs surrounding the daily activities of children whose development is typical? To gain a greater understanding of perceptions of childhood disability in Puerto Rico, we asked: (1) What are the perceived causes of childhood disability in Puerto Rico? (2) What are the expectations for survival? (3) What are the social roles of children and adults with disabilities? and (4) What are the attitudes and beliefs about the capabilities and limitations of children with disabilities?


   Method
Top
 Abstract
 Introduction
 Method
Results
 Discussion and Conclusion
 References
 
Data Collection Techniques

For this study, we used both qualitative and quantitative ethnographic interviewing techniques.37 Qualitative techniques included open-ended interviews and participant observation. All open-ended interviews were performed in Spanish, audiotaped, and transcribed. Interviews concerned with children whose development was typical included questions about the daily activities of children, expectations of childhood behavior, concepts about caregiver and child roles, and perceptions about children's activities. Interviews of the parents of children with disabilities included questions about beliefs of the etiology of the disabling conditions, the expectations for the survival of children with disabling conditions, the social roles of children and adults with disabilities, concepts about caregiver and child roles, and expectations of performance and capability. These open-ended interviews included key informant interviews. These interviews were multiple, in-depth interviews aimed at clarifying or expanding concepts, beliefs, or patterns of behavior.37

From this information, 2 sets of structured questions were created. One questionnaire focused on expected ages of performance of skills and perceptions of daily activities of children whose development was typical. The second set focused on beliefs surrounding childhood disability and expectations of the development of children with disabilities.

In the first set of questions, respondents provided the age ranges at which they expected children without disabilities to master 12 functional skills (Fig. 1). These 12 skills were selected because respondents in open-ended interviews consistently reported expectations that these skills would develop later than the norms established for the PEDI.8 The first set of questions also included statements about the perceptions of the daily activities of children whose development was typical (Fig. 2). Respondents indicated the degree to which they agreed or disagreed with a series of statements. A 3-point scale—agree, somewhat agree, and disagree—was chosen to rate agreement. Previous research suggests that respondents who are Hispanic use extreme responses on questionnaires and that 3-point scales accurately reflect intercultural variation in Hispanic people.21 The second set of questions contained a similar rating scale for statements concerning perceptions of childhood disability (Figs. 3Go–5).


Figure 1
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[in a new window] 		Figure 1. Expectations questionnaire.

 

Figure 2
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[in a new window] 		Figure 2. Child care behaviors questionnaire.

 

Figure 3
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[in a new window] 		Figure 3. Questionnaire to measure the views of members of the community toward disabilities in children.

 

Figure 4
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[in a new window] 		Figure 4. Questionnaire to measure teachers' views on disabilities in children.

 

Figure 5
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[in a new window] 		Figure 5. Questionnaire to measure parents' views on disabilities in children.

 
The structured questionnaires were developed by the authors in English and translated into Spanish by members of the research team who spoke the dialect of Spanish spoken in Puerto Rico. The interviewers pretested each rating scale with 20 to 30 respondents to determine whether the respondents understood the questions and the rating scales appropriately. After field testing was complete, the interviewers clarified the wording of the questions that respondents found unclear. The validity of the structured questionnaires was based on drawing the items from responses in open-ended interviews and the strength of the intercorrelations of the responses among participants that were obtained from the data analysis procedures.38,39 Three members of the research team administered the questionnaires by reading them to respondents regardless of literacy level (unless the respondents preferred otherwise), and members of the research team recorded the responses.

Participants

Sampling strategies for cultural data focus on the selection of informants whose life experiences may influence their cultural knowledge of the concepts being studied.39,40 Forty-four parents and caregivers of children with and without disabilities were recruited from the staff and patients at Centro Espina Bifida (ESPIBI), a rehabilitation and early intervention facility in Mayagüez, Puerto Rico, for participation in open-ended interviews and observations. The children were between the ages of 6 months and 8 years and were matched for age, sex, and socioeconomic status (rated by the Hollingshead Four Factor Index of Social Status).41 Sixteen of these participants became key informants.

Questionnaire on typical childhood function.
Respondents for the questionnaire about childhood function (n=391) were recruited at the regional medical centers of San Juan, Ponce, Arecibo, and Mayagüez and at physician's offices in San Juan. The demographic characteristics of respondents reflected variation in age, sex, education, time spent in the United States, and residence (Tab. 1).


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[in a new window] 		Table 1. Perceptions of Children Whose Development Is Typical: Demographic Characteristics (N=391)

 
Questionnaire on attitudes about childhood disability.
Respondents for the questionnaire about childhood disability included people from the general community, elementary school teachers, and parents of children with disabilities (n=218) with variation in age, sex, level of education, and residence (Tab. 2). Respondents from the community (n=79) were recruited from the regional medical centers island-wide and were interviewed to gain understanding of the general public's view of childhood disability. Elementary school teachers were also included in the study because of the important role teachers play in the daily activities of children with disabilities and in educating and supporting their parents. Seventy-nine teachers were recruited from public and private schools on the western portion of the island. Parents of children with disabilities (n=60) were recruited from Centro ESPIBI and the Pediatric Hospital in Mayagüez, Puerto Rico, and were interviewed to gain on understanding on how their perceptions shaped the daily activities of children with disabilities. Informed consent was obtained for all participants in all interviews.


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[in a new window] 		Table 2. Perceptions of Childhood Disability: Demographic Characteristics of Respondents (N=218)

 
Data Analysis Techniques

We analyzed the transcripts of open-ended interviews using qualitative content and thematic data analysis. We constructed matrices of the content and themes in the transcripts and, from these matrices, identified the major themes, concepts, and patterns of behavior.37 We used the structured questionnaires to evaluate the consistency of these themes, concepts, or patterns of behavior among larger groups of people with different characteristics. Responses to the structured questionnaires were analyzed quantitatively using consensus analysis, a statistical procedure developed by anthropologists.42 Consensus analysis is based on a formal model for identifying culturally defined concepts.43,44 Consensus analysis is an analytic tool that determines whether there is group agreement (or consensus) in response to structured questions, ranks the respondents based on their relative knowledge of the concepts being studied, and obtains a profile of the responses that represents the group consensus.42

Consensus analysis is analogous to factor analysis. It can be thought of conceptually as factor analysis of informant responses (instead of items in an instrument). A single-factor solution indicates homogeneous responses in the group. The output of consensus analysis lists eigenvalues for groupings of respondents. Evidence for a single cultural agreement consists of a first factor eigenvalue at least 3 times greater than the second, a first factor that accounts for at least 50% of informant variance, and no (or inconsequentially small) negative loadings on the second factor. Intracultural variation is measured by the factor loadings for each informant. In the analysis reported here, all informants showed strong agreements, high average factor loadings, and small standard deviations. Reliability and validity coefficients for generalizability of the results are determined by applying the Spearman-Brown Prophecy Formula to the average loading on the first factor.39 The analysis reported here also has high reliability and validity coefficients, which allows the results to be generalized to people with similar characteristics as the respondents.39


   Results
Top
 Abstract
 Introduction
 Method
 Results
Discussion and Conclusion
 References
 
Childhood Function

Textual analysis of open-ended interviews regarding differences in the expectations of children whose development is typical in Puerto Rico versus those in the mainland United States revealed the following theme: "Aqui en Puerto Rico, hay padres que hacen todo para sus niños (Here in Puerto Rico, there are parents who do everything for their children)." When parents reviewed the types of activities included on the PEDI, many believed that children should be dependent on their parents for these types of activities until much later than 7.5 years of age, the ceiling age of the PEDI. Some of the skills that parents expected to develop later in childhood included: use of a bottle, bathing, use of a fork, negotiating stairs or inclines, eating independently, toileting skills, car transfers, problem solving, performance of household chores, and community interactions.

Explanations for the expectations that these skills would develop at a later age and the parental perceptions about daily activities revealed the following themes: interdependence of children and parents, añoñar (pampering or nurturing behaviors), sobre protectiva (overprotectiveness), and the importance of the social demeanor and appearance of children. The emphasis on the interdependency of children and adults, with prolonged assistance with activities of daily living, is rooted in the values of familialism and allocentrism, which emphasize family and group relationships and ties. Caregivers explained, "You want your children to be able to do things for themselves, but you want them to be dependent on you." The values of añoñar (pampering or nurturing behaviors) and sobre protectiva (overprotectiveness) are closely tied to the emotional attachment between the caregiver and the child. Añoñar is related to simpatía (the desire for smooth, pleasant interactions). In the case of children, parents are in a position to create such an environment, allowing children certain privileges, preventing or avoiding emotional upsets and conflicts, and emphasizing protection from illness or injury. The importance of the social demeanor and appearance of children25,45 (ie, to be meticulously dressed and well groomed and to demonstrate loving, respectful behaviors) is related to the allocentric nature of Puerto Rican society, especially the importance of group belonging, group acceptance, and gaining respect and reputation from the social role as a parent.22,25

Observations and interviews of parents revealed several caregiver practices that illustrate the effect of these values on the performance of functional skills. It was not uncommon for children between 3 and 5 years of age to use a bottle when out of the house to prevent spills on clothing or for children 5, 7, or 8 years of age or older to have a bottle at night to make them feel special. Children may be spoon-fed between 4 and 6 years of age because they were slow eaters or because parents wanted to demonstrate special attention toward them. Many parents did not feel comfortable having a child younger than 6 years old using a fork for fear of injury, and, in many rural areas, kindergartens did not provide forks to children for the same reason. Many parents reported that they were sure that their child could perform bathing and grooming skills independently, but they rarely gave the child an opportunity, because they wanted their children to look their best when they went out in public. Many parents reported limiting children to playing inside the house, on locked, enclosed porches, or under close supervision in parks because of dangers such as strangers or illnesses from rain, sweat, or microbes in the dirt. Small children were rarely placed on the floor where they could harm themselves by hitting their head or teeth or become ill from germs. Instead, they were routinely kept in a car seat, their parents' arms, a high chair, or a playpen.

People were asked to report the ages that they expected children to perform specific skills, and these ages were compared to normative data reported in the PEDI. Puerto Rican respondents did not agree on the ages when children would: (1) stop drinking from a bottle, (2) drink from a glass, (3) stop requiring spoon-feeding, (4) wash their own body, or (5) climb stairs. Some people reported later ages than the established norms and others did not. Respondents did expect children to perform toileting, climb stairs, wait for help, and stop using diapers at the same ages indicated in the normative data of the PEDI. They had later expectations, however, for using a fork, performing chores, and independence in car transfers (first factor eigenvalue of 71.5 [4.5 times larger than factor 2, explained 73% of informant variance], average loading=.79 [SD=.10], reliability=.95, validity=.97).

To understand more about parental expectations for their children and what children were allowed or not allowed to do, we investigated social beliefs surrounding child care. Responses to the structured questions revealed that respondents agreed that: (1) to place a baby or small child on the floor increases the possibility that the child can become ill, hit his or her head, or break his or her teeth; (2) children must avoid areas with ramps, stairs, hills, or uneven ground because they can fall easily; (3) children can become sick from walking barefoot outside; (4) if children are disciplined strongly, they will not feel loved; (5) doing things for your children, even if they can do them themselves (eg, dressing and feeding), demonstrates that you love them; (6) good parents make sure their children have nice clothes and look good in public; and (7) taking measures to prevent your children from crying (eg, giving them what they want, doing difficult tasks for them) is a way to demonstrate your love as a parent (first factor eigenvalue=81 [5.3 times larger than factor 2, explained 76.3% of informant variance], average factor loading=.77 [SD=.22], reliability=.97, validity=.95).

Childhood Disability

When considering children with chronic disabling conditions, the themes, values, and patterns of behavior surrounding the meanings of childhood function in Puerto Rico were accentuated and compounded by attitudes, values, and beliefs regarding disability. In unstructured interviews, Puerto Rican families reported that children with chronic disabling conditions are "sick" children, and "sick" children require a higher level of care. They believed that children with disabilities are even more dependent on their caregivers than children whose development is typical and are in need of añoñar (pampering or nurturing) and protección (protection). Being considered a good and attentive parent of a child with a disability brings parents respect and status from their peers.

Results of unstructured interviews with families of children with disabilities, teachers, and health care professionals revealed consistent themes about childhood disability. Themes surrounding childhood disability include delicada (delicate), apagado (close), ay bendito (sympathy), and aguantar (endure). In addition to biomedical explanations for the occurrence of chronic disabling conditions, there is a strong belief that disabilities se corren en la familia (run in the family). This belief can place guilt and shame on a family, or it can provide an avenue for acceptance. One family explained that their child had cerebral palsy because disabilities run in the family (other extended family members had spina bifida, mental retardation, and diabetes). This helped them accept their child's condition. Some families felt guilt or shame for the same reason.

Because of the perception that children with disabilities are fragile and can die easily, the respondents believed that they must be kept very clean, protected from illness or emotional upsets, and be granted special privileges. Some people felt that spending the entire day in school was too difficult for children with disabilities, because they would become too tired or exposed to illnesses, they would not be cared for properly, or they would be hurt by others. Because of this, some children attended a half-day of classes, some children had a one-on-one aide, some children went to private schools with smaller class sizes, and some children received homebound visits from special education teachers.

Some respondents believed that children with disabilities no lo hacen nada (don't do anything), described them as mongos (floppy) or vegetales (vegetables), and viewed some rehabilitation activities as cruel. Some people wanted their children to learn functional skills in rehabilitation programs, but at home they felt too much sympathy to have the child try things independently. These feelings were reinforced by the view that the long-term social roles for people with disabilities are limited because of a lack of programming and a lack of accessible public transportation and buildings.

Interdependency between children and caregivers was even more intense than it was with children whose development was typical, and, in some instances, children with disabilities could not tolerate separation from their primary caregiver. Guilt, shame, and the desire to be viewed as an excellent caregiver provided some Puerto Rican mothers with the strength to aguantar (endure) the burden of a dependent, fragile child with a disability. Limited career options for children after high school reinforced the notion for some that the mother must dedicate her life to the child. The high value placed on all children, the view that all children are a gift from God, and the belief that children with disabilities have the greatest need for care promotes a deep sense of parental responsibility for these children.

We used structured questionnaires to evaluate the consistency of these beliefs among different groups of people. People in the community reinforced these views because they reported that disabilities run in the family and parents of children with disabilities are special, chosen by God. They also reported that they believed that children with disabilities: (1) are a gift from God, (2) have a greater risk for more frequent, severe, and complicated illnesses, (3) have a greater likelihood of dying, (4) need care their entire life, (5) have more difficulty attending school because of lack of mobility, understanding, speech, and resistance to illness, (6) can grow up to be productive adults with jobs and families, (7) need protection from illness and prejudice, and (8) cannot protect themselves. They also described children with disabilities as mongos (floppy) and they believed that these children "don't do anything" (first factor eigenvalue=44 [7.7 times larger than factor 2, explained 82% of informant variance], average factor loading=.74 [SD=.14], reliability=.90, validity=.98).

These views were reinforced by elementary school teachers who reported that children with disabilities: (1) become more tired than other children and it is difficult for them to spend the entire day in school, (2) get hurt more easily and require special attention, (3) need an assistant to help them, (4) have difficulty attending school because of a lack of mobility, understanding, speech, and resistance to illness, (5) have parents with unrealistic expectations of the school, and (6) end up staying in the house with their parents and do not have jobs after graduation (first factor eigenvalue=47 [12.4 times greater than factor 2, explained 87% of informant variance], average factor loading=.79 [SD=.14], reliability=.90, validity=.95).

Among parents of children with disabilities, there was a great deal of variability concerning some of these beliefs, and we found no agreement on the following items: (1) God has given this child to you as a test, (2) the child can become sick more easily than other children, (3) the child can get hurt more easily than other children, and (4) the child does not have to do things that are difficult. Parents believed it was important for their children to: (1) use their braces and do their exercises, (2) be independent in activities of daily living, (3) be very attached to them, and (4) have special opportunities and privileges. They also believed that caregivers should look for treatments to make their children as independent as possible (first factor eigenvalue=45 [15.5 times larger than factor 2, explained 90% of informant variance], average factor loading=.88 [SD=.10], reliability=.92, validity=.96).


   Discussion and Conclusion
Top
 Abstract
 Introduction
 Method
 Results
 Discussion and Conclusion
References
 
An ethnographic approach that uses unstructured and structured interviews to describe culturally defined concepts is a technique commonly used in the social sciences, especially anthropology. The limitations of any ethnographic research include researcher bias because it is impossible to note all relevant facts and all people inherently have selective attention, which introduces the possibility that information could be misinterpreted or not properly represented.37 This bias was minimized by using a team of ethnographers to collect data and by reviewing observations and analyzing field notes with key informants to clarify and increase understandings of cultural concepts, beliefs, and patterns of behavior.46 These techniques improve the validity and reliability of qualitative data.47 Constructing structured questions from the results of observations and interviews is limited by how well the questions are written, what questions are chosen, and the structure and type of rating scale.37 In this study, all questions were reviewed by various Puerto Rican health care professionals and educators and were pretested. Face-to-face interviews of respondents and recording of responses by a member of the research team minimized possible misinterpretation of questions and the scales. Although results are generalizable to people with characteristics similar to those of the respondents, the analysis did identify intercultural variation (the portion of unexplained variance in the consensus analysis). Another limitation of the study is that the design is cross-sectional; therefore, the results reflect the views of people living in Puerto Rico at the time of the study. Economic, social, and political changes over time will ultimately influence cultural and social values regarding childhood function and disability.

The results of this study provide information on the culturally defined meanings of disability and provide a context for interpreting the scores of the Spanish translation of the PEDI for Puerto Rican children. Puerto Rican society emphasizes interdependency between children and caregivers and sympathy for children with disabilities. The PEDI scores of Puerto Rican children with disabilities may be lower than expected, given the severity of their impairments. Families may not have the expectation that their children will or can or should perform certain functional activities or may have never given them the chance. In addition, the results have implications for the care of Puerto Rican children with disabilities, implications that are also relevant for Puerto Rican families living on the mainland because they share many of the same values.48

The sense of responsibility Puerto Rican parents have to protect their children from perceived harm or mistreatment is a strong mediator of behaviors toward children with disabilities. Parents' desire to "protect" their children with disabilities may limit their children's opportunities to perform activities independently. Therapists need to develop a rapport with families so they will honestly discuss caregiver practices. When therapists are aware of the expectations families have of their children and of their actual caregiving behaviors, therapists will be able to provide culturally sensitive family education, develop realistic family-centered goals, and negotiate mutually acceptable interventions.

Añoñar (pampering or nurturing) is another important value that shapes Puerto Rican parental interactions with children with disabilities. Although the effect of Puerto Rican values on the development of children has not been established,26 añoñar does have implications for the performance of functional activities by children and for therapeutic interventions with children with disabilities. Parents may find that the activities therapists ask them to perform at home, such as the application of braces or activities that cause children discomfort, are in conflict with this value. Consequently, many parents opt not to do these types of activities. Therapists may have to modify exercise programs and bracing routines if families are to participate in them. In the same manner, the high degree of nurturing and attention children with disabilities may receive could limit their opportunities to develop problem solving or community safety skills until they are older. Finally, appearance of the child may be more important than independence in self-care activities; therefore, therapists and families may have to agree on 1 or 2 skills that the child will perform consistently.

The results of this study raise many additional questions concerning contextual variables, child development, and behavioral adaptations to disability. First, how do cultural and social values interact with poverty, racism, migration, and acculturation to shape the development of Puerto Rican children both on the mainland and on the island? Currently, no normative or longitudinal studies exist on development in Puerto Rican children,48 studies that could help build a foundation for solutions to the health problems these children face. Second, what is the variation in caregiver practices, values, and expectations for children with specific types of disabling conditions and in specific age ranges, and for families of various types and of different socioeconomic groups? Are children with certain characteristics at a greater risk for negative behavioral adaptations than others? Third, what is the relative effect of the various contextual variables (eg, social, cultural, economic, and family characteristics) on positive and negative behavioral adaptations to children with disabilities? On what component should programs target? Finally, for the provision of effective and culturally sensitive care, more studies are needed to provide information about function and disability for children from other ethnic and minority groups.


   Footnotes
 
Concept, research design, and data analysis were provided by Dr Gannotti and Dr Handwerker. Data collection was provided by Dr Gannotti and Ms Cruz. Interpretation of results was provided by Dr Gannotti, Dr Handwerker, Dr Groce, and Ms Cruz. Writing was provided by Dr Gannotti and Dr Groce. Fund procurement and institutional affiliations were provided by Dr Gannotti. This study was performed in collaboration with the Shriner's Hospital for Children and the Physical Therapy Program, University of Puerto Rico. Assistance in the data collection phase was provided by Olga López de Krumhansel, Maggie Dúpuy Pagan, Ana Nilsa Ocasio, Leshla Cerdero, Marta Zabala, and Elsie Rivera of Centro Espina Bifida (ESPIBI), Mayagüez, Puerto Rico; Maureen Nahorniak, PT, MBA, of the Shriner's Hospital in Springfield, Mass; and Millie Court of the Shriner's of Puerto Rico. Dr Judith Nine Curt provided assistance throughout the project. Ronnie Leavitt, PT, PhD, and Yvette Blanchard, PT, ScD, provided assistance with review of the manuscript.

Ethics approval for this study was obtained through the University of Connecticut and the Shriner's Hospital for Children.

Doctoral Dissertation Awards from the Foundation for Physical Therapy and the University of Connecticut supported this research.


   References
Top
 Abstract
 Introduction
 Method
 Results
 Discussion and Conclusion
 References
 

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