Adult Sibling Relationships With Brothers and Sisters With Severe Disabilities

Data collection

Data were collected via an online survey that we developed based on the previously stated gaps in the extant research and the goals of the study as specified by the research questions. Participants were asked to provide the following demographic information about themselves and their brother or sister: age, gender, race/ethnicity, highest level of education completed, and marital status. They were also asked to list their brother or sister’s disability diagnosis (or diagnoses) and to indicate the significance of the disability (i.e., mild, moderate, severe, profound) in relation to support needs (i.e., intermittent, limited, extensive, pervasive). The participants then were asked to respond to four open-ended questions that were designed to examine the relationship, how it may have changed over time, roles they may have played within it, and possible improvements to it:

We received 122 surveys in our initial database. Two were completed by the authors as trial runs of the online format; these were not included in the study. There were 41 surveys with only demographic information completed that also were not included. Of these, there were no discernible patterns as there was a similar sample of gender, age, education, and disability to the others. This article reports findings from the 79 surveys with both the demographic and open-ended questions completed. The responses to the open-ended questions ranged from 4 surveys with five or fewer single-spaced lines of data to five with two pages of single-spaced data. Most (i.e., the remaining 70) were between 15 single-spaced lines of data (about half a page) to 30 single-spaced lines of data (about a full page). There was no character limit.

Data analysis

We analyzed the data using a multi-stage process of open, axial, and then selective coding guided by the constant comparative method (Creswell, 2013; Strauss & Corbin, 1990). This structured the inductive process of data analysis to be systematic and rigorous. Each author independently open coded the first 24 (30%) surveys, marking data units with key words or phrases to highlight and organize topics related to the research questions, those that were frequently repeated, and those that suggested a unique participant perspective (Bogdan & Biklen, 2003). We shared and discussed the codes until agreement, ultimately creating a codebook with 20 codes (e.g., closeness, distance, family dynamics, caregiver) by comparing, combining, and renaming the initial codes. Then we coded the first 24 surveys again to check for the accuracy of the codes and intercoder reliability. We achieved 78.1% agreement (number of agreements divided by total number of coded data units × 100) overall and 88.1% on the final third of the surveys in this group. After making clarifications to the definition of codes, we completed the coding process with the remaining surveys.

During the axial coding stage, we looked for patterns and relationships in the coded data units and compared them across each survey, ultimately resulting in primary and secondary codes. For example, the individual’s characteristics code (referring to the brother or sister with severe disabilities) was analyzed and expanded to include secondary codes of social difficulties, communication, and behavior. We identified emerging themes by focusing on connections between the primary and secondary codes, developing categories, and examining relationships among categories. The selective coding stage included identifying a core theme, perspectives on relationship quality, around which the other categories and codes were structured to strengthen the theoretical framework and aid in presentation of findings.

Trustworthiness

We engaged in several commonly accepted credibility measures for qualitative research, including investigator triangulation, researcher reflexivity, and particularizability (Brantlinger, Jiminez, Klingner, Pugach, & Richardson, 2005). Investigator triangulation included the close collaboration of the two authors through all stages of the research process, and discussions of the findings with an external auditor. During the entire coding process, we wrote research memos about the process and the emerging themes and discussed these frequently. As siblings ourselves, we engaged in researcher reflexivity by discussing our experiences and beliefs at all stages of this research. We designed the questions to be as open ended as possible to capture the siblings’ perceptions and stories. We also worked carefully to limit assumptions about the sibling experience and to ground the analysis in the participants’ words. For example, to help us focus on participant perspectives, it was useful to remember that although we are siblings who work in the field of special education, most are not and thus do not have access to some of the strategies and approaches we do. Last, we included as many participant quotes and descriptions as possible to help readers recognize common situations and the degree to which the findings may apply to their own situations.

Closeness of the relationship

More than half of the siblings indicated that they had a close relationship with their brother or sister. A woman in her late 40s emphasized that the relationship with her younger brother with Down syndrome has always been close: “We have a close relationship that began when he was born.” Similarly, a 20-year-old woman stated of her younger brother with autism, “I have always adored him even when we were little. We have always been the closest of all my siblings.” Many siblings described closeness despite recognized difficulties, such as a woman in her mid-50s with a brother with ID and bipolar disorder: “Although he is intense, I enjoy him very much.”

Of those with close relationships with their brother or sister, some of the participants described meaningful connections. A woman in her 20s stated of her younger sister, “My sibling is my whole world.” A woman in her 40s described the impact of her relationship with her younger brother with autism and hearing impairment:

Mike and I are best friends . . . Nothing impacts my relationship with Mike. He is my first priority. His happiness is the first factor in every decision I make . . . I went three and a half hours away to college and could have moved seven hours away to start my career, but my need to be near him and make sure he is well cared for was my deciding factor to come home and stay home. When I’m away I feel the way I imagine a parent would feel being away from their child.

Other siblings described that their relationships remained strong or unaffected by the changes that occurred as they aged together. A man in his early 70s stated of his younger brother with Down syndrome, “As we grew older we stayed very close.” Other siblings mentioned situations that affected the quantity of interactions with their brother or sister, though they felt that the relationships remained strong. For example, a woman in her mid-50s stated of her brother with ID and bipolar disorder, “We are close even though he lives in a group home.” Similarly, a man in his late 20s stated of his younger brother with ID, “Now that I’m older I see my brother less often, but our relationship has not changed even a little bit.”

Some siblings described that their relationships improved over time and were closer than they had been. For example, a woman in her 50s described being as close as ever with her younger brother with CP and ID:

My relationship with my brother has changed over the years. When I was very young we always got along. The last four years my relationship with my brother has grown to a loving, caring, and friendly relationship. Over our lives I went from lots of contact to no contact to now actually learning to appreciate him for who he is.

Such sustained relationships over time led to benefits such as awareness, advocacy, and appreciation for many siblings.

Other relationships transformed from lacking in a strong connection to being more vibrant and reciprocal over time. For example, a woman in her early 40s stated of her older brother with ID, “I feel much closer to my brother now than in the past. He asks for me when he comes to my mother’s house which makes me feel good.” Similarly, a woman in her mid-20s stated of her older sister with ID, “I feel that we get along much better now. I feel so guilty saying the following, but it was all so difficult growing up.” A woman in her 50s stated of her younger brother with Down syndrome, “I now know my brother vastly better than I did as he was growing up, and I enjoy his company, sense of humor, and friendship as well.” These siblings had experienced a difficult family dynamic or lack of opportunity to bond with their brother or sister, often resulting in some degree of embarrassment or resentment while growing up. Due to time apart, the resolution of certain family dynamics, or the necessity of providing support, these siblings reconnected and became closer with their brothers or sisters as adults.

As a second type of perceived changes, some relationships were described as becoming more challenging or distant over time. A woman in her early 20s stated of her younger brother with autism, “My brother and I don’t do as many activities together as we used to.” A woman in her late 20s stated of her younger sister with ID and visual impairment, “For a while I was still a confidant for my sister, but I don’t think this is true anymore.” A man in his 40s wrote of his younger brother with autism, “I’m a much smaller character in my brother’s life than I was as a child and we shared a roof. There’s not a lot of emotional need that either of us fills for the other.” This theme of being happier when younger included implications of siblings moving out of the family home. In addition, some of the changes over time were due to declining health:

I feel that my brother and I have worked on developing a positive and supportive relationship throughout our lives. Because of his declining health, my relationship with him is changing. I can no longer include him in certain areas of my daily life because of his increased level of dependence and need. This restricts our abilities to interact as we once did and it is painful for both of us. Our relationship will continue to grow and change as time passes.

Some siblings were hoping and working for improvements in the relationship; others had accepted the current status.

Finally, some siblings described infrequent interactions and strained associations with their brother or sister. A woman in her late 20s stated of her younger brother with Fragile X syndrome, “My brother and I have a limited relationship. I didn’t like my brother when I was growing up. I told my mom that I wished I had a ‘real brother.’” A woman in her early 20s explained of her younger brother with autism, “My brother and I haven’t been close since we were kids. He spends most of his time alone or with our mom. There was a point in time where he didn’t like me and we couldn’t figure out why.” Other siblings described specific reasons for the state of the relationship. For example, a 30-year-old man wrote about his younger brother with autism,

Our relationship has changed, but there’s a very clear power structure that has always been in place. He relies on me much more than I rely on him. I wish it wasn’t so one-sided, but I know that isn’t likely to change.

The siblings often mentioned the influence of distance on their strained relationships. For example, a woman in her late 50s stated of her younger sister with Down syndrome, “I think that if we lived closer, that would allow us to see each other more often and probably improve the relationship in that way.”

Emotional impact of the relationship

Whether the siblings’ relationships with their brothers and sisters were close or not quite as they would prefer them to be, the siblings described the profound emotional impact of these relationships, and especially of their brother or sister’s personal influence upon them. The emotional impact of these relationships included feelings of guilt, joy, frustration, and stress (see Table 2).

Brother’s or sister’s characteristics

In describing the relationships, some of the siblings pointed out certain barriers to interacting with their brother or sister as much as they would like. A man in his 20s with a younger brother with CP, autism, and ID conveyed the extent of these challenges: “There are so many barriers that keep us apart it can be overwhelming at times.” The two variables most closely related to relationship quality were having a diagnosis of ASD and experiencing social difficulties. In addition, communication difficulties and behavior challenges were frequently cited as perceived barriers to improved relationships.

Siblings of brothers and sisters with ASD described notable challenges, as a woman in her 20s stated, “My older brother with autism has been difficult to bond with, and making sense of him and our relationship has been a lifelong process.” Siblings of brothers and sisters with ASD compared with siblings of brothers and sisters with other types of disabilities were more likely to describe their current relationship as not close. Of the 23 siblings whose brother or sister was diagnosed with ASD, 65% (n = 13) described the relationship as being closer when they were younger or not close. Such an outcome for those with ASD seemed due to the presence of the other difficulties cited by siblings as barriers to close relationships. For example, of the 16 brothers and sisters diagnosed with ASD who had data indicating social interaction skills, all but one experienced social difficulties. Of the 15 brothers and sisters with ASD who had data indicating level of communication, the majority (n = 13) did not speak or had limited functional communication. And, of the 13 brothers and sisters with ASD who had data indicating behavioral challenges, the majority (n = 11) engaged in aggressive behavior or tantrums.

Regardless of disability diagnosis, experiencing social interaction difficulties was also related to sibling relationship quality. Of the 35 siblings whose brother or sister was coded as experiencing social interaction difficulties, almost half (n = 16) described the relationship as being closer when they were younger or not close. Social interaction difficulties included sibling descriptions that their brother or sister was shy or anxious in social settings, tended to focus on their special interests during conversations, and did not have any consistent friendships. For example, a 20-year-old woman described of her younger brother with ASD that “the only thing that may benefit us is if his shyness in social situations improved greatly.” As all relationships are social in nature, these challenges were frequently cited as barriers to developing closer relationships even for those who described that their relationship was close.

Some siblings described struggling to develop or maintain relationships when their brother or sister did not speak or had limited functional communication. Of the 34 siblings whose brother or sister was coded with communication difficulties, almost half (n = 16) described the relationship as being closer when they were younger or not close. For example, a woman in her early 30s stated of her younger sister with ID and ASD, “I find it harder and harder to have a close relationship since she is nonverbal.” A woman in her mid-50s with a younger brother with Down syndrome and CP perceived challenges, especially with communication difficulties: “He is dependent for all [activities of daily living]. We see him just to spend time. He does not talk. He is severely handicapped. He is well taken care of in the facility that he lives in.”

Communication difficulties were not limited only to those siblings with brothers or sisters who did not speak. For example, one sibling noted a drop in verbal communication due to disability:

We support each other just by being there for each other. Though my brother does not talk a lot because he is depressed he knows that I love him and will always be there for him. When he comes out of his depression it makes me and him really happy.

A woman in her early 60s noted difficulties due to her older sister’s limited verbal communication skills: “Our relationship could be improved if her communication skills could be improved. She has great difficulty explaining who, what, where, when and how. I never get the whole story and consequently may not be able to address her concerns.”

Some siblings described their brother or sister’s behavioral challenges as barriers to further developing and maintaining close relationships. Of the 22 siblings whose brother or sister was coded as engaging in behavioral challenges, more than half (n = 12) described the relationship as being closer when they were younger or not close. Behavioral challenges included violent or aggressive actions to self or others and also engagement in tantrums. For example, a woman in her early 20s stated of her younger brother with Down syndrome, “He also has significant behavior problems, and I think if we could find a better way to handle those problems we would be closer.” Similarly, a woman in her mid-20s described trying to avoid triggering such behaviors in her younger brother with ASD: “He can have violent tendencies so if I push him too hard he might throw something or try to hit me.”

Time and distance

A majority of siblings mentioned time and distance as key factors in how frequently they were able to interact together with their brother or sister with IDD. Time and distance seemed to act as mediators in that close relationships could be developed and maintained when siblings were in close proximity and saw each other consistently. Time and distance seemed to act as moderators in terms of establishing practical limits to relationship development and maintenance. Ultimately, sibling proximity was related to relationship quality. Of the 25 siblings who lived in the same home or within 2 hr of their brother or sister, more than three fourths (n = 20) described their relationship as being close or closer when they were older.

Two patterns related to effects of distance during the life cycle were (a) siblings leaving home for the first time as young adults and (b) siblings returning home or moving closer as parent caregivers aged. For example, a woman in her early 20s with a younger brother with autism declared, “I miss him like crazy when I go back to college.” A woman in her 60s who moved closer to support her younger brother with ID described,

I love him dearly and I’m in for the long haul, but sometimes I wish my life wasn’t so difficult. Fortunately, I am now retired and my children are grown so I am able to be his caregiver and provide the level of care he needs.

In addition to the practical reality of distance, many siblings described not having enough time to share with their brothers and sisters because of the demands of their own families, jobs, or other responsibilities. From a 52-year-old woman with a younger sister with CP and ID, the following was a typical response: “I wish I could spend more time with her, but the demands of my husband, children, and job make it difficult.” Similarly, a woman in her late 40s with a younger brother with CP and Down syndrome stated, “I think the biggest impact on our relationship is distance (I am two and a half hours away) and being busy with my own family. It is a ‘planned event’ when we want to see him.”