Interviews of College Students with Siblings Who Have Genetic Diseases

Introduction

It has been noted that there are more than 6,000 different genetic diseases, manifested in 1/200 live births (Stoppler, 2014). Birth defects often associated with genetic disease affect one in every 33 infants born in the United States every year (Centers for Disease Control and Prevention, 2014). A child with genetic disease often requires many planned and unplanned hospitalizations, and the family unit along with that sibling may experience unexpected changes in routines, priorities, and increased demands on parental resources.

The purpose of this qualitative study was to learn the lived experience and needs among college students with siblings who have a genetic disease such as Cerebral Palsy, Muscular Dystrophy, Sickle Cell Anemia, Cystic Fibrosis, Down syndrome, Trisomy 13, Schizophrenia and Bipolar Disorder that requires multiple hospitalizations. The aims of the study were to: 1) explore the lived experience of the collegeaged student in a family unit that is living with a genetic disease process, 2) learn how the university may support these students, and 3) identify nursing interventions that would benefit all-aged siblings of patients with a genetic disease.

Review of the Recent Literature

Orsmond and Seltzer (2009) have reported that examination of the status and needs of those who have siblings with a genetic disease has been limited. Those published largely focus on younger sibling children up to 18 years of age. There are numerous gaps and discrepancies in quality that currently plague sibling research, attributed to inconsistencies in methodology and lack of rigorous sampling (Macks & Reeve, 2007). Often seen in sibling research are survey instruments utilized to assess psychological functioning, family functioning, depression, family burden, child behavior, and quality of life (Gold, et al., 2008; Read, et al., 2008; Read, et al., 2011). Researchers also examined the healthy child’s knowledge of their siblings’ disease, such as sickle-cell disease, and findings indicated that such knowledge may be a critical factor related to their behavior (Gold, Treadwell, Weissman, & Vichinsky, 2011; Lobato & Kao, 2002).

Clinicians are not adequately aware that a healthy sibling in a family that has a child with a genetic disease may be at a greater risk for negative psychological outcomes, an effect that has been more recently addressed in the literature (Gaur, et al., 2008; Gold, et al., 2011). Health care providers should be encouraged to examine healthy siblings’ quality of life as many experience hidden stress with the daily demands of the illness on themselves, their parents and their families (Havermans, et al., n.d., ahead of print).

Qualitative studies have also been conducted exploring feelings of loneliness, social support and psychosocial adjustment (Baumann, Dyches, & Braddick, 2005; Graff, et al., 2012; Kaminsky & Dewey, 2002; Rampton, et al., 2007). In a grade school focus group, feelings of embarrassment were shared. One subject stated, “…she bugs me so much. Sometimes I wish she wasn’t even here,” (Baumann, Dyches, & Braddick, 2005, p. 55). Another study reported similar themes of stress over the increasing role being the caregiver, feelings of guilt for being healthy, lack of necessitated parental attention, and withdrawal from social activities (Read, et al., 2011). This finding confirmed both studies by Orsmond & Seltzer, 2007 & 2009 where siblings “feel obligated under a sense of precocious responsibility for protecting the individual with (autism spectrum disorder and helping their parents, and relationships are negatively affected” (Orsmand, & Stelzer, 2009, p. 3). Not only have relationships been negatively affected, but it has also been found in one study that most siblings find their role in their family as the supporter of the ill sibling, as well as of their parents (Sin, et al., 2013).

In Australia, families living with a member who has a genetic metabolic disorders have expressed a need for support as the psychosocial and emotional impact are significant for both patients and families (Anderson, Elliott, & Zurynski, 2013). Findings also noted that families often experienced a lack of appropriate peer and community support services. In the survey, 70% of families indicated that they had become closer to their family because of their shared experiences, and 57% of them were interested in a peer or support group, but less than half could find one that pertained to them.

Few articles went beyond childhood into early adulthood and included 18-21 year olds in the sample and only one study focused on the parent/well-sibling relationship and the well- siblings’ coping and stress (Graf, et al., 2010). One qualitative study interviewed 21 adolescent siblings of children with Down syndrome who needed extensive medical care and participants shared both positive and negative aspects of the experience (Graffe, et al., 2012). Skotko, Levine, and Goldstein (2011) found that 88% of older siblings of those with Down syndrome said they felt that they were better people because of their siblings with Down syndrome and that they planned to remain involved in their sibling’s lives. In another study with young adults of siblings with cystic fibrosis, the healthy sibling felt that they were diplomatic, responsible, mature, important and loyal (Wennström et al., 2011). However, in this same study, participants remembered being angry, envious, and neglected when they were younger as parents had time constraints and they felt the burden of helping. No literature could be found that focused on college-aged students who have a sibling with a genetic disease.

Methods

This is a cross-sectional qualitative pilot study with a phenomenological perspective. Phenomenology is a method of inquiry based on the premise that reality is what a person perceives or understands (Burns & Grove, 2009). Phenomenology is about the lived experience. The conceptual framework included the developmental theories of Erikson and Sullivan. Erikson (1993) speaks of stages that need to be resolved in each age group to move successfully toward adulthood. The university student straddles two stages. Erik Erikson theorized that the university student would be leaving the stage of identity versus role confusion – where there is a questioning of self and where the student is going in life – and entering the stage of intimacy versus isolation – the first stage of adult development – where friendships and dating are important. Sullivan’s Interpersonal Theory includes dynamisms of self-system that protects one from anxiety and maintains interpersonal security (Stern & Marchesani, 2004). For the college-aged student, it is the stage of forming lasting, intimate relationships that are crucial for the university student to develop. Relationships have the power to transform an immature preadolescent into a psychologically healthy adult individual (Evans, 1996).

Sample and Setting

The setting was a university campus with an enrollment of approximately 3,700 students. The University is a liberal arts college that draws on the Lutheran principle of free inquiry. Students of the University were the target sample. Inclusion criteria included: age 18 to 25 years old, a University student having a living sibling with a genetic disease, they must have lived with that sibling for a least five years, been able to participate in a focus group conducted in English, and signed a consent form. Genetic diseases of siblings include but are not limited to: Tay Sach’s disease, Sickle Cell Anemia, Cystic Fibrosis, Hemophilia, Down syndrome, and Schizophrenia or bipolar disorders and all genetic diseases or conditions that required multiple hospitalizations.

Procedure

This study was approved in expedited review by the university Institutional Review Board. Recruitment flyers approved by the Student and Community Engagement Office were posted on bulletin boards in academic buildings and resident halls recruiting candidates for the study. E-mails were also sent out to students and faculty with the flyer attached.

Upon entrance into the study room the research team greeted the students. The study was explained and the potential participants were given time to ask questions. The consent form, the university Human Dignity Policy (that addresses respect for others and intolerance for bullying and harassment), and demographic form (student age, gender, race, ethnicity, birth order, and sibling’s gender, age, diagnosis, number of hospitalizations, medications or therapies needed by the sibling, number of children in the family, and marital status of the parents) was e-mailed out in advance so that student participants had time to carefully read it over. The prospective study participants were given an opportunity to sign a consent form that acknowledges their voluntary participation and notes that the focus group will be audio-recorded. All identities were protected by pseudo-names taken by the study participants and the wearing of pseudo-name badges. Tent place cards with the fake name were made and placed in front of the participant for “identification.” The only rule of the group interview was not to interrupt one another and to know that the forum was an open, trusting, non-threatening place where no judgments were made. A flip chart was used to visually record comments of the group, and reviewed with participants at the conclusion of the session.. The qualitative session was one hour in duration and a $10 gift card was given as compensation for participation time.

Questions were asked of participants that included inquiry into their perceptions of family life such as: Share with us what it was like at home when your sibling was hospitalized? And how did your family talk about the genetic disease of your sibling? Questions were presented that sought insight into their experiences in the hospital setting when their sibling was admitted for care. Tell us a story about when you visited your sibling in the hospital. What, especially the nursing staff, could they have done to make you feel better? The concluding questions sought information on student support needs the campus community may need to consider. How do think your sibling(s)’ disease or syndrome has impacted your personal growth in regard to development/ maturation/independence/ strategies for facing adversity? What kind of support during your college years would you like to see on campus?

Data Analysis

Audio recording of dialogue was professionally transcribed verbatim, a person unknown to group members. The “long table approach” following the methodology of Morgan (1998) and Krueger (1998) and no computer software was used. In this process, the transcript was cut apart; common occurring phrases were put together and arranged into different categories found through the study. Themes were then identified from the categories. The use of a flip chart, field notes, debriefing, and data reconstruction also assisted in the identifications of themes, findings and conclusions.

Results

Sample

All participants were Caucasian, non- Hispanic females. Two students were 22 and one was 20. There were two seniors and one freshman student. Their siblings with genetic diseases were: male with Arrhythmogenic Right Ventricular Dysplasia (a congenital heart disease), female with autoimmune Rheumatoid Arthritis, and male with Down’s syndrome. All students stated that they participate in home therapies such as physical therapy, occupational therapy, speech therapy, and act as a home health aide when outside assistants are not available. All university students shared stories of their sibling having multiple and unexpected hospital admissions. Two students had divorced parents. The hospitals frequented by the siblings ranged from 25 minutes to two and one-half hours away. A focus group style methodology was used for two participants. The third participant was unable to attend the session due to a conflicting academic schedule and asked to be interviewed. The same questions were used and the study was conducted in the same manner as possible.

General Comments on Shared Experiences

College-aged participants were asked to tell a story when they visited their sibling in the hospital. “It was just scary not knowing whether he was going to live. It was really a traumatic experience, and being so young I don’t think I fully realized what happened, what was going on with him and it was just very difficult.” “He was in ICU [intensive care unit] and they thought I was too young to see what was going on.” The second participant agreed that, “It was kind of scary when you see your sister in there [ICU].” Participant A recounted that, “I knew he was in a lot of pain, but it was scary at the same time, I didn’t know what was going on.” Participants shared the disruption in family life created for them during their siblings’ hospitalization. Participant A’s entry into school was delayed one year because of her brother’s surgery. Participant B explained how a routine appointment is never routine. “You don’t expect anything to go wrong at an eye doctor appointment, right? Just typical, you go in, get your eyes checked … ‘Oh no. Something else is wrong with her.” Participant A shared how she was often living with friends and family. “I just, I felt like I was just, you know, kind of living, just living at a place. I wasn’t with my family. It was difficult.”

From responses from the open-ended focus group questions, three themes were identified.

A New Normal

Participant A said, “...now it’s like I feel like I don’t have a normal life, but it is normal to me just because I’m used to it.” Participant B expressed acceptance of her life’s situation, “Everyone’s normal is something different, going back would be weird.” Participant C whose brother had Down’s syndrome said, “Kids would ask me what was wrong with him [my brother]; I’d say nothing is wrong with him.”

Caregiver Role Strain

Participants talked about the conflict of being an adolescent and young adult and the unique roles these siblings experienced and maintained in their families. One participant shared a story about participating in various therapy sessions as if he or she was the client. It was like I had to be his older sister [instead of the reality of the situation being the younger sister].” “We are partners in crime, my brother and me. I went through physical therapy and speech therapy too to make it fun and easier for him, otherwise he wouldn’t do it.” Another participant expressed resolution about her personal future. “What can I do? and I can’t really do anything about it.” She continued“…am I going to be the one to take care of her [when the sibling gets older] ‘cause I don’t know who else would be there for her?” In a matter-of-fact manner the third participant replied to a comment, “Yeah, I did [had to grow up early].” And the other two agreed.

Crippling university social life

The three participants all shared stories about the impact on their college personal life. The first student said, “I had exactly 2½ friends my freshman year at [university]. It was crippling socially. Like I mean gone every weekend. Gone social life.” The second student talked about her returning home to assist in care giving to respite her parent. “I go home every single weekend. I haven’t stayed one weekend this year.” The third participant talked about sleep disturbance when her sibling telephoned. “Sometimes by brother calls me at 2 AM to say, ‘just come home’, and, ‘why can’t I be in college.’”

Participants’ Suggestions for Nursing and University Implications

To conclude the sessions participants were asked or suggestion on how nurses and universities could help them. They all agreed that acknowledgement of the well-siblings’ presence was important. They felt that nurses ignored them when they were visiting. “It’s like ‘I exist too. I know that I’m here to support my sister, but I exist too, kind of thing.” The second student said, “I don’t remember any of the nursing staff ever explaining anything really to me. They kind of left that up to my parents.” The third participant summed up the group’s thoughts by saying, “It just doesn’t affect the siblings [child with genetic disease], but everyone…”

The participants were then asked what suggestions they had for universities to help in the well-siblings’ role in academic and university life. They offered three suggestions. The first was to establish a university support group. The purpose of the support group would enable them to “…just sit down and talk.” They continued, “Yeah, [the support group] will understand.” And “It would be nice to talk to someone who goes through the same thing, understands.” Participant C whose brother had Down’s syndrome suggested an idea for siblings’ visitation weekend. She said, “Have a little siblings’ weekend with a different theme [for siblings with genetic diseases]. Other siblings [with genetic diseases] could maybe hang out [together].” When asked how faculty could support these students Participant A suggested, “Sometimes flexibility with due dates. I’ve pulled lots of all-nighters trying to get things done and then [assignments have] poor quality because I’m trying to take care of something at home.” When asked about sharing family information with university advisors they unanimously agreed when one said, “I don’t feel like I want to be singled out, that’s for sure.”

Positive Experiences

Only one of the three participants viewed having a sibling with a genetic disease as having a truly positive influence on her life and that was participant C whose brother had Down syndrome. “They [other peers in high school] acted like it was a negative thing and said, ‘oh I feel so bad for you.’ But it wasn’t a negative thing.” She continued that her experience at the university was much difference than what she had experienced in high school. “Maybe everyone grew up.” This participant recounted that while her brother had proposed to every girl on her dormitory floor, he was well liked and warmly received when he visited. “There is so much better in being different. It taught me to like all different kinds of people, I feel I have learned a lot, I don’t judge people.”

Challenges of the Study

It is acknowledged that the sample size was low and results may be anecdotal. However, even with a small sample size there was repeating comments and themes. While working with the Student and Community and Engagement Office in regards to distributing the flyers on campus, there was a break in communication and the flyers did not get posted until three weeks after the anticipated date, and another week was lost due to spring break. Attempting to recover lost time, we obtained permission to send a general email to the student body and faculty, and again posted flyers, but the end of the academic semester was approaching. The student researcher knew of other university students who met the inclusion criteria of the study, but they did not come forth. A second challenge was scheduling conflicts of the participants.Continued on Next Page »