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Running head: OCCUPATIONAL EXPERIENCES OF TUN OT15 STUDENTS

Occupational Experiences of TUN OT15 Students: Family Members and Chronic Disease Brett J. Bonetti, Jaimee D. Perea, Hayley J. Meredith, & Megan J. Lawrence Touro University Nevada

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Background The effects of chronic disease can weigh heavily on both the patient and their families. Quality of life of family members can be compromised in regards to social experience, psychological distress, and everyday balance (Golics, Khurshid, Basra, Salek, & Finlay, 2013). Previous studies have shown that family members of patients can be more emotionally affected by illness than patients themselves (Golics et al., 2013). However, it is unknown whether the issues affecting family members of patients are unique to students in Occupational Therapy (OT) graduate programs or whether family members can be impacted in similar ways regardless of their academic circumstance. Lupus, multiple sclerosis, arthrogryposis multiplex congenita, cancer, and rheumatoid arthritis are all examples of demanding chronic illness indirectly impacting the lives of students in the OT Program at Touro University Nevada (TUN). Diagnoses of these unyielding illnesses not only distress and complicate lives of their victims, but initiate worry and anguish in family members. An occupational shift often occurs as relatives struggle with the delicate balance between family member and caregiver roles. Students entering a graduate level program move long distances from home and are not able to visit family often. In addition, they are introduced to the high levels of stress involved in studying at a graduate level. This increased pressure and anxiety combined with longing for home can be overwhelming for students and negatively affect their academic performance. Purpose and Significance There is current literature exploring the impact of illness on family members of patients with a specific diagnosis; however, much of the existing work regarding family members focuses on family caregivers. This often overlooks those who may not identify themselves as caregivers,

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but live with or spend time with the patient and may still be greatly affected (Golics et al., 2013). The quality of life of family members, especially OT students, is important to understand so that appropriate strategies can be developed to meet their needs and support them while their loved ones are ill. We hypothesized that significant impacts on OT students who have a person in their family with a chronic disease could be comparable to other OT students in similar situations. Moreover, commonalities between occupational experiences would have generalizable impacts on the lives of those OT students. The common areas that might be similarly affected, whatever the specific diagnosis, include emotional impact, shift in roles, occupational transitions, time commitments, personal relationships, and special values or beliefs. This information has not been previously systematically reviewed, but research on this subject is necessary to identify common themes to develop resources for students. The aim of this study was to understand the occupational experiences of OT students at TUN with family members diagnosed with chronic disease. Grand Tour and Sub-Questions The grand tour question established the framework for this study.How have your occupations evolved or changed with your family members diagnosis? This central question formed a hierarchal structure over two sub-questions: How does your role/relationship with that person affect your occupational experiences? and How do you perceive your occupations and roles will change in the future? Seven communal themes emerged through these highlighted questions which guided the interpretation of data. Key Concepts Six key concepts emerged through the course of this study. The keywords are defined as

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follows: Occupational experience: Events encompassing culture that leave an impression on the dynamic relationship between an individual and their meaningful daily activities. Roles: societal or familial expected social behavior of an individual Relationships: interpersonal connections between two or more individuals Values: worth placed on morals or ideas Beliefs: something accepted as true Communication: Interpersonal rapport through verbal or nonverbal exchange which involves the ability to attend and listen to the thoughts and feelings of others. Delimitations and Limitations Three context-based delimitations or boundaries of the study have been identified. Each interview utilized three typists to record all verbalized script which is the first boundary of the study. Voice recorders and transcription processes were not used; therefore, this increased the chance of omission of verbalized information. The second delimitation was the location of the interviews: the school environment. The school environment often conveys a busy aura which has potential to inspire distraction associated with a busy schedule. The last delimitation was the structured interview question format. Each question could not be further interpreted or clarified for the participant; moreover, the interviewer followed the script verbatim which omitted the possibility of clarification of their communicated statement. Each of these delimitations provided a potential, but not evidenced, boundary of the interpreted information. There were five identified limitations in the study which resulted from participant recruitment methods. The study had a small sample size of five participants did not provide a wide variety of information to verify findings. The five subjects were all women which

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negatively limited the diversity of the study. Occupational therapy students from TUN provided the convenience aspect of the sample which again provided a boundary to varied subjects. These factors increase the instance of bias among findings. The increased rapport between us as researchers and participants may have encouraged less divulgence of information from the latter. The participants may have provided less information in response with knowledge of impending daily communication with the interview team. None of the five participants reside in the same home with the family members who are the subject of the study. This factor limits communication and current diagnosis updates. Review of Related Literature Our pursuit for literature on occupational experiences and the quality life of family members of patients with chronic disease began on the Touro University Library website. We searched the key terms: occupational therapy, family, chronic disease, roles, quality of life, burden, relationships, and caregiver within the PubMed database and over 200 results unveiled, very few of those results were applicable to our topic. We found that previous studies have assessed family quality of life in individual disease areas and specialties. A literature search by Goldberg and Rickler (2011) yielded 139 articles and reviews of caregivers of chronically ill persons which included previous reviews and controlled studies from 1996-2010. Family caregivers function as advocates and provide physical, emotional and financial support, frequently without any training, often without recognition or support, and rarely with financial reimbursement. Many people living with chronic illness could not live independently without family caregivers (Goldberg & Rickler, 2011). The patients close family members may experience poor psychological well-being, depression, anxiety, decreased satisfaction in relationships, poorer physical health, the caregiver

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burden (Goldberg & Rickler, 2011). A recent large retrospective cohort study concluded that male partners of women breast cancer patients had a significant increase in major depression, resulting in psychiatric hospitalization. This study emphasized the importance of screening for depression and providing psychological treatment for caregivers of breast cancer patients, and may have implications for family caregivers of people with other chronic illnesses (Goldberg & Rickler, 2011). In 2013, four researchers from Cardiff University in the United Kingdom published findings regarding familial relationships in regard to specific chronic disease. The aim of the study, The impact of patients' chronic disease on family quality of life: an experience from 26 specialties, was to investigate if issues affecting family members of patients are unique to those with specific diseases or whether family members are impacted in similar ways regardless of the patients condition. The authors Golics et al. (2013) showed support of our Grand Tour question in that they showed similar struggles and change in roles by family members. The study explains that the different types of illnesses whether it is physical, psychological, or social can illicit an emotional experience that can create a burden in the daily life of the family. As within our study, they have not yet uncovered whether or not the issues or roles that arise from having a family member with a chronic disease are unique to that specific condition, or can be translated across conditions. The themes established within our study, and those established by the researchers of our peer reviewed articles, reveal that the impact and roles may be more overarching amongst family members rather than just case specific. Our article intended to look at key areas of occupational roles, occupational relationship, occupational values, and occupational communication similar to how this article looks at a wide range of areas of medical conditions that impact areas of family.

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Our hope for future research is that resources will become available for graduate students with close family members living with chronic disease, and this will be available to support them through the graduate school experience. Procedure Design This qualitative study explored the experience of five OT students with a chronic diagnosis in their family. Data saturation remained evident although five students established the small sample. Informed consent was obtained before the interviews were conducted. The study utilized a convenience sample of OT students at TUN. Researcher Role The role of the researchers included the following: location of participants that showed relation to the research purpose reservation of a private room with a divider to conduct interviews, conduction of structured interviews, data coding, and outcome analysis. As the researchers, we had previously established rapport with the participants. Pseudonyms, confidentiality, and privacy were all prioritized areas that were instilled throughout the entire interview process and report of outcomes. Data Collection The initial selection of participants began through e-mail to the OT students at TUN. This e-mail stated prerequisites which would qualify individuals to participate in the research study as well as an explanation of the classification of a chronic disease. These parameters were defined as the following: having a living family member diagnosed with chronic disease, a role as an OT student at TUN, and availability for an interview regarding the subject. Once the participants were selected, each was scheduled for a fifteen minute interview.

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One room with a divider was reserved for all five interviews. The whole research team participated in each interview to promote consistency; one researcher was designated to interview all participants, the remaining three manually recorded verbatim interviews through typing. Furthermore, the divider separated the interviewer and participant from the three recorders to increase perceived-privacy of the interviewee. The interviewer welcomed and thanked the participant then read verbatim a list of seven questions that were asked in the same order for each participant. The same procedure was followed for each of the five participants. As aforementioned, the interview was a structured format; therefore the interviewer asked each of the questions and did not further prompt the participants or offer additional information. This format was discussed along with other limitations. Data Analysis Three separately-recorded full transcripts from each interview were first read and analyzed several times. These transcripts were then combined to assess relevance to the research question. Commonalities between the participants were determined and compared. We grouped each commonality by relationship and theme. Each of the themes were explored for relevance, and several verbatim remarks were chosen to demonstrate the validity of the study. Verification The accuracy of our findings was verified with utilization of investigator triangulation. As aforementioned, the method of data collection involved the convergence of recorded information between three recorders. The consistent environmental set-up for the interviews provided the component of standardization to our study. Our sample population was unique in that the experiences were not limited to one

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specific diagnosis. Moreover, the communal occupational experiences of our participants can be generalized to other graduate students with family members who suffer from chronic disease. The replication of our study may yield different results due to cohort design or focus of the profession. Occupational therapy is uniquely based on a holistic and client-centered perspective in contrast to a bottom-up, biomechanical, or medicinally based training. Findings Multiple commonalities were present among the set of interviews. Several core themes emerged from the collected interview data including (1) community awareness, (2) balanced roles, (3) healthy choices, (4) family dynamics, and (5) familial education. Each participant will have a corresponding pseudonym to protect their privacy. Community awareness This theme defines the altered sensitivity to surroundings and resources in relation to diagnoses and disabilities. Direct exposure to disability was also mentioned increasing awareness of resources available to those with different diagnoses. Often individuals will take things such as wheelchair ramps for granted whereas it is of high value to many others. Overall, exposure to diagnoses has increased disability-associated mindfulness.

I notice [disability] everywhere because I am more aware of it. (Kathy)

[Experience with a disability] has opened my eyes on how hard it can be for people. (Erica) Balanced roles

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A shift in role-associated familial dynamic has become the core focus for every participant. Each reported not only alterations of roles, but also shift, both positive and negative, in inter-familial relationships. Difficulty isolating the indefinite boundary between family member and caregiver was also expressed. They continue to care for their loved ones yet resist the pull toward overbearance. Newly acquired knowledge from current health-based education has led each of the participants into yet another challenging role which will be further discussed: the educator.

I need to find the balance between daughter and educator. (Natasha)

Healthy Choices The concept of bettering ones self is another common theme that emerged through data collection. The personal goals of increased exercise and healthy choices have been identified by many participants as an effort toward preventative health management. These individuals see the difficulty of living with a chronic disease and hope to either avoid or lessen the effect of living with a disorder. Not only are these individuals improving their health to better themselves, but also to prepare themselves to better care for their loved one. It is this direct approach to wellness that selflessly immerses the participant into the caregiver role.

I take care of myself so I can take care of her. (Erica)

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Family Dynamic It is a common perception that an individuals diagnosis is modulated through self-cope and individual strength. This is occasionally the case; however in many situations physical and emotional cope is based on the efforts of the individuals family and/or support system. The interview data supported the theory of strength through relationships and introduced this often unfamiliar perception to the participants.

Seeing it first-hand will help me with patients, I understand more of the familial aspect of it-understanding that it just not just affect the person but the whole family. (Natasha)

My most important role is taking care of [my daughter]. (Kathy)

I could see pregnancy being a problem-- so maybe helping out on days that she is not feeling well...Helping her day to day if that comes up. (Sally)

Familial Education Based on the convenience sample design of the study, each participant is a full-time OT student. Occupational therapy is a health and wellness based pursuit; therefore, education is health related and often focuses on specific diagnoses. Consequently, this prepares and

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motivates students to further educate their family on different components of the diagnosis. The integrated urge to educate was heavily evident throughout the collected data.

[Based on education] I try to help him make the decisions more. I am able to share more of the things I have learned in school. (Nina)

I nag her to go to a support group and eat healthier...I try not to overstep but still help. (Natasha)

I try throwing therapy into daily routine. (Kathy) Conclusions and Recommendations This qualitative study provided a wealth of knowledge and information regarding graduate students and their occupational experiences with family members diagnosed with chronic disease. Several evident commonalities naturally emerged regardless of diagnosis. Occupational therapy is a client-centered and holistic field which highlights the familial component of an individual. Caregiver education is key to family-based accommodation to their ever-evolving occupations; consequently, this education should not be neglected by health care professionals. Family knowledge of the diagnosis and its progression will prepare them for the inevitable shift of occupational roles; thus leading to increased self-efficacy and confidence with personal progression. Research is needed to differentiate cultural aspects of occupational roles and family

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dynamic. Roles are culture dependent and determine both relationships and methods of caregiving. Additional research can help with greater generalization toward a diverse population. Furthermore, research on the effectiveness of support groups for caregivers and other family members may provide an additional resource. Groups are support systems, which provide a sense of belonging and community, may not be available at home or through peer relationships. This study provides the foundation for additional research regarding the family aspect of individual chronic illness. The illustration of positive impacts from a holistic approach will inspire other healthcare professionals to develop mutual respect for family-centered care; consequently creating sensitivity to the shift in occupational roles that the family will undoubtedly endure.

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References Goldberg, A., & Rickler, K. S. (2011). The Role of Family Caregivers for People with Chronic Illness. Medicine & Health / Rhode Island, 94(2), 41-42. Retrieved January 22, 2014, from http://www.rimed.org/medhealthri/2011-02/2011-02-41.pdf Golics, C. J., Khurshid, M., Basra, A., Salek, M. S., & Finlay, A. Y. (2013). The impact of patients' chronic disease on family quality of life: an experience from 26 specialties. International Journal of General Medicine , 2013:6, 787 - 798. Retrieved January 18, 2014, from http://www.dovepress.com/the-impact-of-patients39-chronic-disease-onfamily-quality-of-life-an--peer-reviewed-article-IJGM

Appendix: The structured interview questions were asked as following: 1. What is your history with your family member diagnosed with chronic disease? 2. How have your occupations or roles evolved or changed with your family members diagnosis? 3. Have your values or beliefs changed as a result of the diagnosis? 4. Do you have more empathy for patients with chronic disease because you have a family member who has experienced it first hand? 5. How do you engage or communicate with that person? How often? 6. Has your communication with them changed since you have become more involved within a health care role? 7. How do you perceive your occupations and roles will change in the future?