Latino Foster Parent Health Perceptions of Chronic Conditions: A Qualitative Exploration

Download Latino Foster Parent Health Perceptions of Chronic Conditions: A Qualitative Exploration

Post on 08-Dec-2016

212 views

Category:

Documents

0 download

Embed Size (px)

TRANSCRIPT

<ul><li><p>ORIGINAL PAPER</p><p>Latino Foster Parent Health Perceptions of Chronic Conditions:A Qualitative Exploration</p><p>Sandra H. Jee Mary Del Balso Salter </p><p>Jacquelyn Gonka Nancy P. Chin</p><p> Springer Science+Business Media New York 2013</p><p>Abstract Prior work using nationally representative data</p><p>of children in the child welfare system suggested that</p><p>Latino foster parents were less likely to identify children in</p><p>their care as having chronic conditions. Hispanics comprise</p><p>over one-fifth of children in foster care, the majority of</p><p>whom have special health care needs, and there is a</p><p>growing need to recruit qualified Latino families into the</p><p>child welfare system. Little is known about Latino parents</p><p>health perceptions regarding chronic conditions, and</p><p>potential reasons for differing identification rates of chil-</p><p>dren with special health care needs. We conducted 17</p><p>home-based, in-depth interviews with Latino foster parents</p><p>to explore health perceptions and cultural beliefs for chil-</p><p>dren in their care around the concept of chronic illness. We</p><p>found that Latino foster parents understanding of condi-</p><p>tions that occurred over and over again related to emo-</p><p>tional and behavioral health problems. In contrast, their</p><p>perception of chronic was associated with terminal,</p><p>biological conditions that had limited treatment options,</p><p>such as cancer, HIV, and hepatitis. Latino foster parents did</p><p>not interpret the survey question on chronic illness as it was</p><p>intended, and their view of recurrent conditions did not</p><p>reflect chronic health conditions. Developing survey</p><p>questions that are culturally sensitive should improve</p><p>accuracy in assessing chronic health conditions for this</p><p>high-risk population. Sensitivity to cultural interpretation</p><p>for this high-needs population is vital to enhancing com-</p><p>munication between families and health providers caring</p><p>for children in foster care.</p><p>Keywords Foster care Latino Foster parents Chronichealth condition Culture</p><p>Introduction</p><p>There are approximately 400,540 children in the foster care</p><p>system (U.S. Department of Health and Human Services</p><p>2011), the majority of whom have been neglected and/or</p><p>abused prior to entering the system (Simms et al. 2000;</p><p>Szilagyi 1998). Prior work has demonstrated that children</p><p>in foster care have a high prevalence of chronic health</p><p>issues, developmental delays, and psychiatric disorders</p><p>(Almgren and Marcenko 2001; Chernoff et al. 1994;</p><p>Hansen et al. 2004; Halfon et al. 1995, 2002; Pasztor et al.</p><p>2006). Previous local and state-level analyses have esti-</p><p>mated the prevalence of chronic conditions among children</p><p>in foster care to be between 44 and 82 % (Jee et al.</p><p>2006).To assess the prevalence of chronic health conditions</p><p>of children in foster care using the first nationally repre-</p><p>sentative sample of children in the child welfare system,</p><p>our research group used the NSCAW (National Survey of</p><p>Child and Adolescent Well- Being) (Jee et al. 2006). One</p><p>key finding of this study was that compared to other ethnic</p><p>groups Latino caregivers were significantly less likely to</p><p>S. H. Jee (&amp;)Division of General Pediatrics, Department of Pediatrics,</p><p>University of Rochester, Rochester, NY 14642, USA</p><p>e-mail: sandra_jee@urmc.rochester.edu</p><p>M. D. B. Salter</p><p>Solid Organ Transplant Division, Department of Surgery,</p><p>University of Rochester, Rochester, NY 14642, USA</p><p>J. Gonka</p><p>Stony Brook Medical Center, Stony Brook, NY, USA</p><p>N. P. Chin</p><p>Department of Public Health Sciences, University of Rochester,</p><p>Rochester, NY 14642, USA</p><p>123</p><p>J Child Fam Stud</p><p>DOI 10.1007/s10826-013-9719-0</p></li><li><p>report caring for a child with a chronic illness. This was a</p><p>provocative finding that received both local and national</p><p>attention. We believe there are two possible explanations</p><p>for this finding: (1) the NSCAW question did not correctly</p><p>assess the presence of chronic illness among Latino</p><p>families which the survey described as illness which</p><p>occurred over and over again; and/or (2) Latino specific</p><p>health perceptions and practices have a positive impact on</p><p>the management of chronic conditions in foster children so</p><p>they did not occur over and over again. To our knowledge,</p><p>there was no previous published work that had examined</p><p>Latino health perceptions and practices for this at-risk</p><p>population of children in foster care.</p><p>It is important to understand Latino health perceptions</p><p>and practices, especially with respect to children in foster</p><p>care. Latinos are not only one of the largest and fastest</p><p>growing minority populations in the U.S., but Latino</p><p>families have also markedly increased their rates of adop-</p><p>tion of children in foster care (Mikhail 1994; Riche 2000;</p><p>Flores et al. 2002). In 2004, the U.S. Department of Health</p><p>and Human Services Administration for Children and</p><p>Families reported that Latino families adopted nearly 5,300</p><p>children from foster care, a jump of almost 20 % in 5 years</p><p>(U.S. Department of Health and Human Services 2007).</p><p>Most recent data indicates that Hispanics comprise 21 % of</p><p>children who entered foster care in 2011, and public</p><p>agency adoptions of Hispanic children has increased to</p><p>15.5 % over the past decade (U.S. Department of Human</p><p>Services 2011). The need in our current child welfare</p><p>system for qualified Latino families who share cultural</p><p>identity and language is exceeded by the number of Latino</p><p>children in the system; hence, ongoing campaigns are</p><p>actively recruiting more Latino families to become foster</p><p>parents (Casey Foundation Leadership Group 2012).</p><p>Latino foster parents represent a rapidly growing subset of</p><p>caregivers in the child welfare system who have unique,</p><p>culturally informed health perspectives that may impact their</p><p>interpretation and management of chronic illness by seeking</p><p>traditional methods of care (Rogers 2010). Prior work</p><p>examining foster parent perspectives has demonstrated that</p><p>transcultural foster care placements may impact the family</p><p>relationships and cultural identity (Brown et al. 2009);</p><p>moreover, the presence of disabilities or special health needs</p><p>for children in foster care affects service needs (Brown et al.</p><p>2005; Brown and Rodger 2009; Lauver 2008). Our goal in</p><p>this study was to understand why Latino foster parents might</p><p>have reported caring for fewer children with chronic diseases</p><p>by creating a provisional explanatory model of chronic dis-</p><p>ease management for Latino foster families. Specifically we</p><p>sought: (1) to explore Latino foster parents perceptions of</p><p>health; (2) to understand the Latino concept of chronic</p><p>conditions; and 3) to assess the validity of the NSCAW</p><p>question within the Latino population.</p><p>Method</p><p>Recruitment to Study</p><p>We received a list of all Latino foster parents (n = 18) in</p><p>our county population from our county Department of</p><p>Human Services. We mailed recruitment letters to all</p><p>potential participants, and then used follow up telephone</p><p>calls to schedule home-based interviews. Latino caregivers</p><p>who participated in the project received a $20 gift card.</p><p>Two investigators with expertise in qualitative data</p><p>research and Spanish language and culture, conducted the</p><p>home interviews for this study.</p><p>Interview Procedure</p><p>Our research team developed a semi-structured interview</p><p>guide to collect demographic information and to explore</p><p>beliefs and perceptions regarding personal and foster care</p><p>related health conditions and health management. The</p><p>interview script covered three main domains using open-</p><p>ended questions: (1) The caregivers personal health, (2)</p><p>The caregivers experience and perceptions of their foster</p><p>childrens health, and (3) The caregivers belief about</p><p>chronic conditions. Interviews were conducted in subjects</p><p>homes, lasted approximately 60 min, and were audio-taped</p><p>for verbatim transcription. Researchers also took field notes</p><p>during the interviews and asked unscripted follow-up</p><p>probes as needed to clarify subject responses. All inter-</p><p>views were conducted in English, although researchers</p><p>were able to speak Spanish; if there were language barriers,</p><p>a dictionary was available to assist the participant.</p><p>Data Analysis</p><p>The analytic team was comprised of two research-experi-</p><p>enced individuals (M.A.D. and S.H.J.), with a third</p><p>supervisory qualitative methods mentor (N.P.C.). We used</p><p>the framework approach, using a matrix based method,</p><p>(Ritchie and Lewis 2003), to develop open-ended questions</p><p>for our interview guide. All data were analyzed using the</p><p>thematic framework approach, in which analysts looked for</p><p>common themes or patterns that fit into three domains: (1)</p><p>Caregivers personal health; (2) Caregivers perception of</p><p>foster child health; and (3) Caregivers understanding of</p><p>what comprises a chronic illness. Interviews were analyzed</p><p>separately by two independent readers (M.A.D. and S.H.J.)</p><p>who then met together to determine themes and categorize</p><p>data. Readers listened to audio-tapes as needed to verify</p><p>emphasis of speech in the transcribed interviews. Dis-</p><p>agreements were corrected through debate and review</p><p>with the supervisory qualitative methods mentor (N.P.C.)</p><p>to ensure reliability of analyses. We used constant</p><p>J Child Fam Stud</p><p>123</p></li><li><p>comparison to check that each coded item. (Pope et al.</p><p>2000). New sub-domains were added to the above frame-</p><p>work as a result of several validation meetings. Some</p><p>disagreements in domain categorization brought up the</p><p>issue of inappropriate categorization for certain themes.</p><p>New themes were established, which allowed for the</p><p>addition of two new domains; role of religious faith and</p><p>cultural practices related to home remedies impacting</p><p>health perceptions.</p><p>A cross classification matrix, using a thematic frame-</p><p>work approach (Ritchie and Lewis 2003), allowed for</p><p>further examination of how all five domains relate, and</p><p>helped to organize the data into key themes, concepts, and</p><p>emergent categories. It was determined that many domains</p><p>were interrelated and potentially sequential. For example,</p><p>view of health and wellness can be understood in terms of</p><p>its influence on behavioral health status and holistic view</p><p>of the child, and chronic health conditions can be under-</p><p>stood in terms of a foster parents past experience with</p><p>managing complex health problems for themselves and for</p><p>others. Closer examination of domains called for re-cate-</p><p>gorization that would better reflect these main themes and</p><p>the interdependent process. As a result, all new domains</p><p>were identified to reflect the themes that became evident</p><p>after the initial coding and analysis of data. We recoded all</p><p>the transcripts according to these new themes. The fol-</p><p>lowing analysis reflects this final coding.</p><p>Results</p><p>Participant Demographics</p><p>We contacted the entire population of registered Latino</p><p>foster parents who were in the Monroe Countys foster</p><p>system at the time of the study. Our study sample included</p><p>17 out of the 18 Latino foster parents in the county. The</p><p>home interviews lasted approximately 60 min each. Study</p><p>participants (see Table 1) ranged in age from 30 to</p><p>66 years old. The majority of the parents were female, born</p><p>in Puerto Rico, and many contained a high school educa-</p><p>tion or less. The length of time of being a foster parent</p><p>ranged from 9 months to 26 years.</p><p>Results from these interviews can be classified into the</p><p>following domains: (1) View of health status for self and</p><p>child; (2) Holistic view of health, including behavioral</p><p>health status; (3) View of a chronic condition as a health</p><p>problem that is incurable; (4) Divine power impact on</p><p>health and cultural influences on health; and, (5) Latino</p><p>emphasis on creating a nurturing family environment. An</p><p>explanatory model of chronic disease management for</p><p>Latino families is noted in Figure 1. Select quotes from</p><p>transcripts are noted in Table 2.</p><p>View of Health Status for Self and Child Related</p><p>to a Symbiotic Experience of Maintaining Health</p><p>Many Latino foster parents who were mature in age, and</p><p>who had already raised their own birth children, expressed</p><p>that having children in their care had a positive impact on</p><p>their own health status, because having young children kept</p><p>Table 1 Study participant demographics</p><p>Average age 47.6 years</p><p>Ethnicity</p><p>Dominicans 2</p><p>Cubans 3</p><p>Puerto Ricans 12</p><p>Gender</p><p>Males 3</p><p>Females 14</p><p>Average number of years in U.S. 28 years</p><p>Education</p><p>High school or below 12</p><p>Some college or higher 5</p><p>Marital status</p><p>Single 3</p><p>Divorced 4</p><p>Married 10</p><p>Average number of years as a foster parent 7 years</p><p>Average number of biological children 2</p><p>Latino Culture Health Belief</p><p>Perception of Health and WellnessCaregiver Personal Health</p><p>Caregiver Experience and Perception of Foster Childrens Health</p><p>Belief and Understanding of Chronic Conditions Perspectives on Behavioral Health</p><p>Holistic View of the ChildDesire to Nurture Child</p><p>Role of Religious FaithHome Remedies</p><p>Fig. 1 Explanatory model of chronic disease management for Latinofoster families</p><p>J Child Fam Stud</p><p>123</p></li><li><p>them young and active. (I take care of myself and I can</p><p>have many years healthy Really I take care of myself Ialways watch what I eatI want to stay healthy and strongfor the children. Marisol, a 53 year-old Puerto Rican).</p><p>Holistic View of Health, Including Behavioral Health</p><p>for Children who had Experienced Trauma and Abuse</p><p>We sought to understand Latino foster parents perceptions</p><p>of what comprised a healthy child, and they categorized</p><p>this into three main categories: physical appearance,</p><p>childs behavior, and childs emotional well-being. Physi-</p><p>cal assessments of a healthy child were mostly based on the</p><p>skins appearance and the relative weight of the child.</p><p>Children who are healthy are considered to glow or have</p><p>shiny skin and are not skinny, not fat, not overweight.</p><p>(See Table 2) Further, Latino foster parents valued positive</p><p>child behavior and emotional stability as key components</p><p>of health. They praised children who were affectionate,</p><p>personable, and respectful of family rules and expectations.</p><p>These foster parents defined healthy children as those who</p><p>were emotionally stable, free from depressive symptoms,</p><p>and those who were not impaired by family dysfunction.</p><p>View of Chronic Condition as a Health Problem that is</p><p>Incurable or Terminal</p><p>We asked two questions to elicit a deeper understanding of</p><p>foster parents perceptions of chronic conditions. We used</p><p>the NSCAW question (Has your child experienced a</p><p>health condition that kept coming back again and again?)</p><p>to test Latino responses to this survey question, and we</p><p>followed this with our own interview questions whether</p><p>their child had experienced a chronic condition or health</p><p>problem. Results yielded dramatically different findings,</p><p>demonstrating that there may be some differences in</p><p>interpretation of the survey question versus in-depth</p><p>exploration of chronic conditions. The NSCAW survey</p><p>question elicited responses that centered on emotional and</p><p>behavioral issues such as bedwetting, lying and</p><p>Table 2 Qualitative responses about Latino foster parent perceptions of health, chronic conditions, and cultural influences</p><p>A healthy child manifests physical signs of wellness, positive prosocial behavior, and emotional stability</p><p>Physical appearance 51 year old Puerto Rican: A healthy...</p></li></ul>

Recommended

View more >