Students living with chronic illness: the school counselor's role.
Chronically ill children
Student counselors (Practice)
Hamlet, Helen S.
Gergar, Patricia G.
Schaefer, Barbara A.
|Publication:||Name: Professional School Counseling Publisher: American School Counselor Association Audience: Academic; Professional Format: Magazine/Journal Subject: Family and marriage; Psychology and mental health Copyright: COPYRIGHT 2011 American School Counselor Association ISSN: 1096-2409|
|Issue:||Date: Feb, 2011 Source Volume: 14 Source Issue: 3|
|Topic:||Event Code: 200 Management dynamics Computer Subject: Company business management|
|Geographic:||Geographic Scope: United States Geographic Code: 1USA United States|
To investigate the current practices of schools and school
counselors working with students with chronic illness and the protocols
for providing these services, the authors conducted a mixed design,
grounded theory study, with an eye toward pinpointing any trends or
patterns in service provision. They identified a collaborative,
developmental, multisystemic model for working with these students. This
article also discusses counselors' recommendations on how to
improve the responsive service delivery process.
"Joshua is sick and in the hospital. They don't know what's wrong. He'll probably be in the hospital for another day or two. I'm worried and we don't want him to fall behind in his school work."
Although nothing about an initial contact with a parent/caregiver of an ill child is typical, these are often the words school counselors will first hear. This is a frightening situation for parents, as their child is now in the health care system, an unfamiliar system in which parents have little or no control. Reaching out to the school is an understandable effort to "do something" in a more familiar and accessible environment. Early parent-counselor communication can provide support to the parent while building the foundation for future collaboration. Interactions of this nature are occurring with greater frequency. As professional school counselors, what is our role and how do we best meet the needs of these students and families?
As the incidence rate of chronic illness in children rises, the responsibilities and complexities of the role of the school counselor must expand to include this growing population. Although the majority of children in the United States are considered healthy (61 million or 83%), approximately 20% of school-age children are living with chronic illness (Center for Disease Control and Prevention [CDC] 2008; Engelke, Guttu, Warren & Swanson, 2008; Zylke & DeAngelis, 2007). With advancements in health care and emphasis on having students return to their normal routine, children with chronic illness are increasingly coping with both the challenges of their illness and the demands of a typical school day (Kaffenberger, 2006; Prevatt, Heffer & Lowe, 2000; Van Cleave, Gortmaker & Perrin, 2010). The difficulties incurred while coping with chronic illness impact students' academic, social, and emotional development, thereby making the role of the school counselor even more complex (Shin, 2001).
Support for children facing these issues is within the realm of the entire school community. Leading the effort within this community is the school counselor. As community leaders, school counselors initiate the support process through collaboration with the various professionals in the student's life and by providing responsive services to the student, the student's family, and the community. The American School Counselor Association's (ASCA; 2005) National Model provides the framework for the role of school counselors that includes providing responsive services that support students' academic, career, and social-emotional development. These responsive services encompass consultation, individual and group counseling, crisis counseling, referrals, and peer facilitation (ASCA, 2005). Students with chronic illnesses such as asthma, diabetes, epilepsy, allergies, cardiac conditions, Addison's disease, and obesity are in need of many, if not all, of these services (Perrin, Bloom & Gortmaker, 2007; Van Cleave et al., 2010). Additionally, due to the nature of chronic illness, the services required may change frequently and must therefore be evaluated continuously in order to keep current with the fluctuations in a student's health.
Meeting the changing needs of this diverse student population calls for the use of a holistic, developmental, and systemic approach. Using the developmental systems theory, counselors can address the life stage and development of these students within the context of the various systems in their world (Lerner, 2005). This approach is especially salient when working with students with chronic illness. Once a student becomes chronically ill, the number of systems in his or her world can expand exponentially within a matter of days due in large part to the additional health care systems. Furthermore, individual student characteristics, the unique nature of the illness, the developmental stage of the child, the phase of the illness, and the interaction of these different variables top the long list of potential developmental, systemic, and contextual factors affecting student adjustment (Perez, 1997). Subsequently, addressing the needs of these students demands a significant degree of cooperation and collaboration among the systems in the student's life, with a keen awareness of and sensitivity to developmental factors (Peeks, 1993; Powers, DuPaul, Shapiro, & Kazak, 2003).
Educating the whole child is a concept that emphasizes the need to provide students with an educational community that has the resources and personnel to meet their academic, social, emotional, and physical needs. The notion of educating the whole child has a substantial history in the field of American education and can be traced as far back as John Dewey in the early 20th century (Sidorsky, 1977). Support for this concept is evidenced through House Resolution 1093, currently before the United States Senate, that designates March as "National Whole Child Month." Educating the whole child, by definition, incorporates the expertise of multiple professionals involved in the student's life. Meeting the comprehensive needs of students with chronic illness takes this call for action to a higher standard.
The fields of education and health care embrace this holistic approach to meeting the complex needs of students with chronic illness. ASCA's position statement (2004) indicates that "the professional school counselor advocates for students with special needs and is one of the many staff members who may be responsible for providing information as written plans are prepared for students with special needs" (p. 44). ASCA's statement clearly represents the importance of the counselor's role in supporting students with chronic illness while highlighting the team approach and need for collaboration among all members of the school community. This support also is communicated through the mission or position statements of sister organizations, such as the American Association of School Administrators (2010), the National Association of School Nurses (2006), and the National Association of School Psychologists (2009). In addition, the American Medical Association's Council on Scientific Affairs (2005) recommended that physician, community, and school collaboration be increased to address management and prevention of chronic illnesses, such as obesity.
Clearly, both educational and medical stakeholders acknowledge the need for comprehensive services regarding the needs of students who have chronic illness. However, the literature on the actual procedures for implementing these services in a collaborative manner is less straightforward. Therefore, the purpose of this study was to investigate the current practices of schools and school counselors working with students with chronic illness and the protocols for providing these services, with an eye toward pinpointing any trends or patterns in service provision. Specifically, the researchers examined the process for offering support services to these students, surveyed the use of specific support services, and identified the responsibilities of school counselors in this regard. The researchers also assessed the school counselor's role in coordinating and collaborating with other school, community, and health professionals who are providing services to these students.
The authors used a mixed methods research and grounded theory design in this study. Hanson, Creswell, Plano Clark, Petska, and Creswell (2005) defined mixed methods research as "the collection or analysis of both quantitative and qualitative data in a single study in which the data are collected concurrently or sequentially, are given a priority, and involve the integration of the data at one or more stages in the process of research" (p. 224). Grounded theory research design is a qualitative method that identifies and categorizes key relationships within a context. Corbin and Strauss (1990) further characterized the grounded theory approach as a qualitative research method that is designed to "develop a well integrated set of concepts that provide a thorough theoretical explanation for social phenomena" (p. 5).
Sampling and Data Collection Procedures
The researchers employed purposive sampling to identify professional school counselors currently working in the field that either had experience working with students with chronic illness or had observed counselors working with these students. Such a sampling approach is "designed to enhance understanding of selected individual's or group's experience(s) or for developing theories and concepts" (Devers & Frankel, 2000, p. 264).
The authors used both formal and informal networks of school counselors to recruit study participants because both of the study's researchers have been in the school counseling profession for the past 20 years. Each researcher contacted her informal network of school counselors and explained the nature of the research study. The contacted counselors were then asked to participate in the study and subsequently pass along the online survey link to other school counselors. Soon after the initial requests for participation were made, representatives from local professional school counseling organizations contacted the researchers offering to forward the survey using the organizations' e-mail groups. In addition, graduate students in the Professional School Counseling program of an East Coast university volunteered to contact school counseling departments to solicit participation.
The purposive sample consisted of 96 currently employed school counselors who had either worked with students with chronic illness or had observed their respective school's process of working with these students. The sample included 73 female and 21 male professional school counselors, with two counselors opting not to state their gender. Eighty-seven counselors were employed in Pennsylvania; two school counselors in New Jersey; four in New York; one in Maryland; one in Georgia; and one in North Carolina. Ninety counselors were certified; six were not certified. Twenty-one school counselors worked in public elementary schools; 17 worked in public middle schools; 53 worked in public high schools; three worked in private elementary schools; two worked in private middle schools; and three worked in private high schools. Twenty-three professional school counselors had 1-5 years of experience; 27 counselors had 6-10 years of experience; 13 counselors had 11-15 years of experience; 13 counselors had 16-20 years of experience; and 16 counselors had more than 20 years of experience. A total of 97.1% of the professional school counselors had worked directly with students who have a chronic illness, while 2.9% had only observed other counselors working with these students.
The study used a three-part survey to collect demographic, quantitative, and open-ended qualitative information. Survey items were developed based on current literature and on information provided by school administrators and school counselors in the field. A pilot group of school counselors, counselor educators, and administrators further critiqued the survey questions with final revisions made based on the input from the professionals in the field, thereby ensuring adequate content validity.
For the purposes of the study, chronic illness was defined on the survey as follows: "a physical health problem(s) that lasts over three months, affects a student's normal activities, and requires multiple hospitalizations and/or home health care and/or extensive medical care. Students with chronic illness may be ill or well at any given time, but they are always living with their condition" (Boyse, Boujaoude, & Laundy, 2008, p. 3).
The survey was distributed both online via Survey Monkey (Finley, 2010) and in hard copy format, with 85 surveys completed online and 11 as hard copies (the latter were given out by school counseling departments). A specific benefit of using Survey Monkey was that it allows for ongoing analyses of collected data, which was particularly important for this study due to the online format's compatibility with the grounded theory approach (Wright, 2005).
The survey comprised three sections. The demographic section of the survey gathered participant background information, including years of school counseling experience, certification, geographic region, gender, school level of employment, experience with students with chronic illness, and types of chronic illnesses. The quantitative section obtained information about the role of the school counselor and the processes employed when working with students with chronic illness. For example, questions asked about written protocol; use of 504 Plans; who writes the 504 Plan; who coordinates services; and who communicates with the family, the faculty, the health care professionals, reentry programs, and responsive services provided. The final quantitative question of the survey was, "Do you feel that the university counselor education program that you attended prepared you to work with students with chronic illness?" Lastly, the qualitative section gleaned more specific information about the school counselor's role. Prompts asked the participant to share strategies they found successful in their work with students with chronic illness, challenges they have encountered in their work with these students, and a story or highlight of their involvement with these students.
The first author has been a certified school counselor since 1993, a certified school psychologist since 1999, and a counselor educator since 2004. The second author is a certified school counselor with more than 25 years of experience in the school counseling field. The third author is a certified school psychologist with 15 years of experience in various educational contexts. The first and second authors participated in data collection and primary data analyses; the third author contributed to quantitative data analyses.
Quantitative. The quantitative data provide information on the existing processes and context of school counselors working with students with chronic illness. The researchers used descriptive and nonparametric statistical analyses to analyze the data using SPSS 16.0. Separate chi-square tests investigated the association between counselors' years of experience and the educational interventions used to meet students' needs, and the relationship between the students' grade level and the types of direct responses services. Due to the multiple comparisons, a Bonferroni-adjusted p-value denotes statistical significance.
Qualitative. The researchers analyzed qualitative data through a constructivist, grounded theory framework (Bryant & Charmaz, 2007). They implemented coding and constant comparative analyses. Strauss and Corbin (1990) defined open coding as the initial investigation of the data for broad, global categories. The first author used line-by-line open coding to perform the initial analysis of the data into categories or themes based on the frequency of words, phrases, and ideas. The second author, a counselor, and an administrator separately coded the data without knowledge of the previously identified categories or themes. The same data were then peer-reviewed to audit the initially identified categories. The authors resolved discrepancies between the coders' categories through questioning, comparison, and discussion.
The researchers then employed axial coding to further investigate relationships and interactions between the categories and subcategories. This allowed for identification of broader thematic categories based on the data. Finally, they applied selective or focused coding to refine these broader categories, thereby allowing for identification of conceptual ideas that integrated the existing categories (Bryant & Charmaz, 2007). Once saturation was obtained, the authors used a graphic representation of the conceptual framework to provide visual structure to the data. A theoretical model emerged from the data and resulted in a collaborative, developmental, multi-systemic framework to understand the counselors' experiences working with students with chronic illness.
In the qualitative paradigm, the phenomenon of trustworthiness refers to standards of credibility or to a conceptual soundness with which to judge the research (Marshall & Rossman, 1995; Williams & Morrow, 2009). The authors applied triangulation, peer review, an awareness of any potential researcher bias, and examination of negative cases to establish credibility of the findings. Use of peer reviewers reduced the likelihood of any error throughout the data analysis process (Bogdan & Biklen, 1998).
A collaborative, developmental, multisystemic framework emerged from the data of this grounded theory, mixed methods research design study. This article presents the findings using Strauss and Corbin's (1998) paradigm model of (a) causal conditions, (b) context, (c) intervening conditions, (d) action/interaction strategies, and (e) outcomes/ consequences.
The causal conditions that emerged from the data were the increasing need for responsive student services, and the challenge of being knowledgeable enough about these conditions and their effects to best serve the students. Counselors are increasingly being called upon to provide responsive services to this often overlooked minority of students. Along with the necessity to meet these students' concrete needs is the expectation that the counselor will be a student's advocate with a clear understanding about how best to meet the needs in question. Furthermore, knowledge of the impact an illness has on a student is essential to that goal.
Fully 97% of school counselors in this study reported working with students with chronic illness; not a surprising figure given that the CDC (2008) cites an increasing incidence of chronic illness, affecting approximately 20% of school-age children. As one counselor stated, "In the past, working with a student with chronic illness was uncommon. Now it seems that we are working with many students coping with a multitude of medical conditions and illnesses."
Regarding the specific types of chronic illnesses, counselors report working with students who have diabetes (60%), seizures (51%), asthma (48%), Crohns/IRB (40%), and cancer (38%). When given the option to mention other illnesses, the list was extensive and included complex medical conditions including Neimann Picks disease, Duchenne Muscular Dystrophy and Guillian Barre Syndrome. The counselors further noted that their own knowledge base lacked information specific to a particular student's diagnosis. For example, one counselor observed "a lack of knowledge of specific medical concerns in order to anticipate the student's need." Another counselor indicated, "When I first started working with a particular student, I realized I did not have enough information on the topic, so I contacted the Leukemia and Lymphoma Society and gained more resources."
The contextual condition that emerged from the data is developmental and driven by the grade levels of the school. The counselors' selection of responsive services was influenced by the grade level of the students, their developmental needs, and the age-appropriate responsive services provided. The study asked counselors to share strategies that were successful when working with students with chronic illness. The data revealed that 71% of the high school counselors reported providing responsive services primarily focusing on academic needs and self-advocacy skill development to students, while 12% of the elementary schools focused on academic interventions or accommodations. This is not to say that high school counselors do not report attending to students' social and emotional needs, but rather that counselors' primary target of intervention was supporting students in meeting their academic goals. Examples of high school counselors' responses regarding strategies used with students were
* modification of curriculum;
* modification of academic schedule;
* adjusting programs to meet changing needs (e.g., home instruction, tutoring, structured study halls, flexible scheduling for partial-day attendance);
* provide counseling for students to help them cope with the illness and educational responsibilities;
* have the ill student be a part of the planning when determining how best to accommodate for the illness (i.e., teaching the student self-advocacy skills); and
* focus on the students' strengths and coping skills.
Among elementary and middle school counselors, 88% reported providing services that primarily addressed the social and emotional impact of the illness on the student, as compared to 29% of high school counselors. Examples of elementary/middle school counselors' responses regarding strategies used with students included:
* In elementary school, we usually find that keeping them in a routine works best. Parents let us know if they have certain fears and needs beyond what the teacher can reasonably take care of.
* Group counseling is helpful. Elementary students enjoy this a great deal, even if no one else in the group has the same issues to deal with. This can help a student feel a part of things, make friends, feel they are connected to at least a few of the students in their classroom.
* A kindergarten student had cancer and the counselor went to the classroom, read Katie's Hats and discussed how to make this little girl feel as happy and welcome as any other student, even when she lost all of her hair. We also had Hat Day.
To further investigate the relationship between the categorical variables of grade level and types of responsive services provided, the researchers conducted a chi-square test. Results revealed a statistically significant association for group counseling with student grade levels, [chi square] (1, N = 95) = 5.29, p < .05; and for educational programs for students [chi square] (1, N = 95) = 4.67, p < .05. The frequency of using the direct service strategies of group counseling and educational programs with students is higher in the elementary school setting.
Intervening conditions or that of the broader structural conditions impacting action strategies that emerged from the data were communication and time constraints. Counselors addressed the communication process in two systems: that of the school and that of the health care provider. Communication among school professionals was considered essential to the coordination and implementation of appropriate and comprehensive delivery of responsive services. The counselors' responses illustrating the importance of communication included:
* Communication and cooperation is essential between all constituents, especially if the chronic illness is a major barrier to academic success. If this is the case, the student typically ends up with an IEP.
* The fines of communication have to be open and used.
* Communication is vital in order for the student to be successful and comfortable. It is important for the student and their family to share any relevant information with the counselor or nurse. This allows the school to provide the support needed.
* The more communication with the family and the hospital staff, the smoother the strategies and interventions.
* Communication. Communication. Communication.
Counselors also noted challenges with communication in both the school and the health care systems. Some of the responses were:
* Student can develop a lack of connection to the school when there is difficulty in keeping communication going.
* The biggest challenge I found is whether or not the family wants other students to be aware of the illness.
* One challenge is a lack of communication on what is going on.
* Communicating to all of the teachers and making sure that all teachers and staff are aware of the situation and what to do if the student experiences difficulty while in the classroom.
* Working with doctors can be a challenge. They do not return calls and rarely have input on what would benefit the student from a school perspective. We are very willing to create a plan that would benefit the student but we often do not have what that should look like. The doctor will sign homebound forms but then not provide any input about transitioning a student back to school.
The second intervening condition was the time constraints inherent in busy school counseling departments. This point is best illustrated by the following counselors' responses: "Time. These students need more time than we can allow. As counselors, we tend to be the middle person for coordinating everything to ensure an effective transition" and "We need more time to make the plans. The administration tries to help by giving us some time, but often teachers do not understand the toll that a chronic illness takes on a student and family, especially when the student starts to act and feel better."
When asked if there is a designated "point person" in the school who communicates the student services needed to the faculty and school community, 75% of respondents indicated that a key facilitator is identified. Specifically, the majority of respondents noted that the counselor is responsible for communicating the needs of a student with chronic illness to the faculty and school staff.
The action/interaction strategies that emerged from the data were (a) collaboration, (b) educational interventions, (c) the use of 504 plans, and (d) written protocols to follow when a student is diagnosed with a chronic illness. Collaboration was noted as an action strategy that counselors frequently used, although they could not always access the in-school personnel or medical professional as often as needed. The various action strategies taken included collaboration with school psychologists, school nurses, administrators, parents, teachers, and medical health professionals. Summarizing the responses of many, one counselor stated, "Collaboration between the nurse and the school counselor is effective in providing staff supports and information necessary to meet the student's needs. The school counselor works with the medical professionals as well to obtain information about the needs of the student." Of the school counselors in this study, 64% noted that their school has a liaison with the student's medical professionals. However, the majority of respondents noted that the liaison was the school nurse and that the communication focused on medical procedures and medication requirements, rather than the needs of the whole child.
Educational options/interventions and the use of 504 plans were mentioned as action strategies to facilitate support and accommodations for students. Seventy percent of counselors reported use of a 504 plan with students with chronic illness and 69% of counselors indicated that the school counselor writes the 504 plans in their school. The educational options employed by school counselors to meet students' needs are (a) regular education, (b) regular education with accommodations, (c) homebound instruction, (d) online courses, (e) correspondence courses, (f) tutoring during summer session, and (g) summer session courses. Table 1 indicates the frequency with which these the various educational interventions/options are used.
To further investigate the use of educational options, the researchers conducted a chi-square test to evaluate association between the number of educational options for meeting students' needs and the counselors' years of experience. Results revealed a statistically significant relationship, [chi square] (3, N = 94) = 13.65, p < .01, meaning counselors with over 10 years experience utilized more educational options when working with students. This finding suggests that the action strategies used may vary according to counselors' level of experience.
Written protocols are standard in school systems and normally followed when action strategies are implemented. However, 68% of the counselors reported that their school does not have a written protocol to follow after a student is diagnosed with a chronic illness. When asked to recommend changes that would improve service provision to students with chronic illness, counselors identified a need for clear policies and procedures with the following responses:
* A clear policy on confidentiality that the parents and school community are all aware of would be helpful.
* Perhaps it would be good to have a formal process in place for offering services within school or referring to outside agencies when a student is diagnosed.
Counselors also identified a need for written protocols for student reentry; however, 78% of the counselors noted that their school does not have a reentry program for students. Other limitations cited included unclear policies or procedures for confidentiality, challenges in meeting the needs of the whole child, and the paucity of opportunities to collaborate with health care professionals.
The survey asked participating counselors to share a specific story or interaction highlighting their work with students with chronic illness. These counselor-student interactions speak volumes about the counselors' commitment to students and their ability to rise above the limitations of the systems in place. The following stories are particularly representative of the counselors' work with this often overlooked population.
Counselor #1: "I worked with a student who missed most of a school year due to a rare cancer. I think overall the process was handled well. However, I wish we were able to accommodate the student and the family better through the use of technology as a tool to communicate and keep the student more connected to the school. These students need to maintain a sense of normalcy as they battle their illness. Any method to keep them connected to everyday routine will allow for an easier transition when they return."
Counselor #2: "In most cases I have had successful educational outcomes. However, the cases that haunt me are the ones that have resulted in the student transferring out of traditional school and into cyber school. In these cases, I feel I lacked appropriate tools to address their needs. For example, we have homebound education which requires that the student miss two weeks of school before they are eligible. However, with certain chronic illnesses that have consistent short term absences, there is nothing available. The 'in a few days, out a few days' student is left with a frustrating situation of always playing catch up, never feeling part of the class. Ultimately the student gets poor grades that do not clearly represent the student's potential. Cyber school becomes one of the only options, but then again, maybe we could restructure homebound. But that too is difficult because it is hard to find teachers who have such flexibility in their personal schedules willing to tutor ..."
The counselors in this study shared information and experiences relating to their work with students with chronic illness and their role as the school counselor. The analysis of the data provided by these counselors resulted in a collaborative multi-systemic developmental framework. The need for additional collaboration was pervasive throughout the data. Collaboration with school professionals, medical professionals and parents was identified as an important component to the delivery service process. McCabe and Shaw (2010) note that "developing a collaborative relationship between school and medical professionals is an important aspect of supporting students with medical and mental health issues and can make a notable difference in their academic performance and overall school performance" (p. 9).
Students with chronic illness interact with and are influenced by the family system, the health care system, the school system, and their community. In order to provide culturally competent counseling services to these students, counselors must be familiar with the multiple, interrelated systems in a student's life (Keys, 1999). The counselors in this study identified the need to interact with the multiple systems in a student's life in order not only to provide the appropriate response services, but also to better understand the complexities of the student's experience and to better anticipate their needs. The counselors also identified the need for the development of or clarification in school policies and procedures when working with students with chronic illness.
The school counselors in this study identified developmental stages as an influence on the direct services provided to students. The developmental needs of elementary and middle school students differ from those of high school students. When considering the needs of middle childhood, Broderick and Blewitt (2006) reported that "satisfactory social relationships are important in the overall picture of adjustment and enjoy unanimous support from developments of every theoretical persuasion" (p. 196). In contrast, the developmental tasks of adolescents or high school students are more focused on self-knowledge and identity exploration (Erikson, 1968). However, when viewing students from a whole child perspective, focus on both academics and social-emotional aspects of a student's life is essential.
Implications for School Counseling Practice
The results of this study have implications in the domains of professional identity in the areas of leadership and advocacy, counselor educator curriculum, and responsive services. In practice, counselors have a leadership role in the advocacy and care of this particularly vulnerable minority population. However, the comprehensive role that counselors are taking in this work is often overlooked and not recognized as a significant part of the role and function of a school counselor. Rather than letting this work become one of the many tasks that lands on the counselor's desk through default, counselors can see it as an opportunity to take a leadership role in working with the school and medical communities while advocating for our students.
An additional professional identity development issue that became evident through this study is the need for counselor-to-counselor mentoring. As the saying goes, "you don't know what you don't know." The results indicate that a counselor's years of experience affect the number of educational options they access for students. This may be a result of the counselor's developmental process. If so, as the more experienced school counselors mentor the newer counselors, their students would be better served.
Implications for counselor education were identified by the final question of the survey. The question was, "Do you feel that the university counselor education program that you attended prepared you to work with students with chronic illness?" Of the counselors surveyed, 82% responded "No." The implication for counselor education programs is the need for additional coursework on collaboration, special education, and work with minority populations.
Counselors identified multiple implications focusing on the delivery of responsive services. What did the counselors in this study want us to learn about the role of the school counselor and their work with students with chronic illness? First, counselors are providing services for an increasing number of students with chronic illness; second, the counselors are doing a good job, but they feel they could be doing a better job. The counselors' recommendations on how to improve the responsive service delivery process were
* a written protocol for when a student is diagnosed;
* establish partnerships and relationships with the local medical hospitals and organizations;
* participate in professional development workshops to develop competency in writing 504 plans and in accessing special education services;
* develop reentry programs for students with chronic illness;
* increase collaboration with the school and medical health professionals involved with the student; advocate for systemic change in order to improve access to educational options, such as homebound instruction;
* recognize the comprehensive role of the school counselor;
* mentoring programs for new counselors; and
* counselor education coursework addressing a counselor's role in working with students with chronic illness.
Counselors were clear that the goal is to serve this student population using best practices. The counselors of this study identified a need for counselors to take a leadership role when working with students with chronic illness. Interestingly, research and practice literature of other school professions such as school psychologists and school nurses also highlights the opportunity to take a leadership role when working with these students; however, a "who's on first" situation still exists. Miscommunication and the potential of students falling through the cracks can be avoided by counselors benevolently stepping out of the box, taking charge, communicating, collaborating, and advocating on behalf of these potentially vulnerable students. This leadership role will facilitate procedure and plan development, reentry program development, mentoring opportunities, and increase the use of comprehensive responsive services. Finally, a counselor's response best summarized the results of this study: "Providing a 'student first' approach is very important. It is easy to 'lose' a student who is not consistently present at school."
One limitation of qualitative research is the threat of researcher bias. While this issue may be a factor in this study, the authors used peer review, continual data analysis, and team debriefing to minimize this threat. Another limitation of qualitative research is the use of a purposive sample. All participants in this study were school counselors and, while the focus of the study was on their role, information or data gathered from other stakeholders in the systems might have provided varied perspectives. Another limitation of this study was the geographic similarity of the participants. Although participants were from six states, the majority were working in one east coast state. The quantitative data also suffer from a lack of representativeness and various threats to internal and external validity that may hinder generalization of results; however, the concerns and issues raised by respondents appear
to be instructive and quite salient for school counseling and mental health service providers.
Given CDC estimates that approximately 1 in 5 school-aged children is living with a chronic illness, school-based mental health and health professionals necessarily must be prepared to (a) advocate for these students; (b) assist in adjusting teacher and school demands, if appropriate; and (c) address students' academic mad socioemotional needs over the ongoing course of treatment. Survey findings highlight counselors' awareness of specific needs of students with chronic illnesses at different grade levels, as well as schools' level of preparation in meeting these needs in elementary, middle and high school grades. Development of a written protocol for school response and reentry procedures and consistent implementation is essential, as is thorough knowledge regarding available intervention options. Lastly, collaboration, communication, and cooperation between the student with chronic illness, peers, parents, school professionals, and medical care providers is critical, and school counselors are in a unique, important position to facilitate service integration, program implementation, and intervention monitoring.
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Helen S. Hamlet, Ph.D., is an assistant professor at Kutztown University of Pennsylvania. E-mail: email@example.com Patricia G. Gergar, M.Ed., is a guidance counselor at Upper Perkiomen High School, Pennsburg, PA. Barbara A. Schaefer, Ph.D., is an associate professor of education at Pennsylvania State University, University Park, PA.
Table 1. Percentage of Counselors (n = 82) Using Specific Educational Interventions for Children and Youth with Chronic Medical Conditions Educational % who Intervention have used Regular education with accommodations 84% Homebound instruction 67% Regular education 51% On-line courses 13% Tutoring during summer session 11% Summer session courses 10% Correspondence courses 4%
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