Siblings of individuals with intellectual and developmental disabilities (IDD) are likely to become caregivers for their brothers and sisters. The expectations of and experiences with caregiving, however, may be different. In this study, using focus groups, we compared the perspectives of siblings who were current caregivers (n = 25) to siblings who anticipated being caregivers (n = 17). Responses were compared and contrasted across four areas: caregiving responsibilities, rewards, challenges, and opinions toward being paid as a caregiver. Both caregiver groups were knowledgeable about and invested in their brothers and sisters. Also, they both reported that they enjoyed bonding with their brothers and sisters. Challenges, for current caregivers, related to understanding and navigating the service system. In contrast, anticipated caregivers were concerned about planning for the future. Mixed viewpoints were expressed about receiving pay for providing care although a greater number of current caregivers were receptive to it as a means to supporting their own families.
With lifespans rivaling the general population, individuals with intellectual and developmental disabilities (IDD) are outliving their parents (Braddock, Hemp, Rizzolo, Coulter, Haffer, & Thompson, 2005). Unfortunately, adult disability services for individuals with IDD are not keeping up with the demand. Over 75% of adults with IDD live with their aging parents while waiting to receive community-based services (Braddock, Hemp, & Rizzolo, 2008). As parents become unable to care for their adult children with IDD, siblings frequently become the caregivers (Heller & Arnold, 2010). Given that siblings are likely to become caregivers for their brothers and sisters with IDD, it is necessary to identify and develop needed supports as siblings transition to caregiving roles.
Although many siblings anticipate providing care for their brothers and sisters, the actual type of caregiving provided may diverge from their expectations. For example, in past research, many siblings anticipated living with their brother or sister with IDD (Krauss, Seltzer, Gordon, & Friedman, 1996). In a longitudinal study about families of adults with IDD, however, only 10% of siblings actually coresided with their brother or sister with disabilities (Freedman, Krauss, & Seltzer, 1997).
In addition, Burke, Taylor, Urbano, and Hodapp (2012) identified characteristics that predicted adult sibling expectations for caregiving in their national survey of 757 adult siblings. Siblings who expected to be caregivers had parents who were currently providing excellent care to the family member with IDD. However, when parents provided poor caregiving to the family member with IDD, siblings were less likely to anticipate caregiving roles. Thus, it seems that sibling caregivers who anticipate providing caregiving may have expectations that, on becoming caregivers, are not realized.
Unfortunately, most extant research about sibling caregiving equates anticipating and current caregiving siblings (Burke et al., 2012; Greenberg, Seltzer, Orsmond, & Krauss, 1999; Krauss et al., 1996). In one sense, treating anticipating and current caregiving siblings interchangeably is not problematic because both anticipated and current caregivers most likely are involved siblings. Indeed, anticipated caregiving siblings may become caregivers for their brothers and sisters. The reality of caregiving, however, may differ from their expectations. The differences between siblings who anticipate versus actually provide caregiving may be explained by construal theory. For anticipated caregiving siblings, distant events (i.e., caregiving) are likely to be abstract. In contrast, for currently caregiving siblings, the logistics and details of caregiving are apparent, discrete, and close (Liberman & Trope, 2008; Trope & Liberman, 2003). Current caregivers face the reality of caregiving when they arrange residential placements, provide financial arrangements, and interact with the service system to support their brothers and sisters.
By understanding the differences between anticipated and current sibling caregivers, false expectations can be debunked. To identify the similarities and differences between siblings who anticipate (versus currently provide) caregiving, it is necessary to compare the perspectives of siblings who fulfill each of these roles. There are three areas of particular importance that should be addressed: the type of caregiving, rewards and challenges of caregiving, and attitudes toward paid caregiving.
A first step in identifying the similarities and differences among each group of sibling caregivers is the definition of caregiving. The meaning of “caregiving” is a matter of debate (Dahlberg, Demack, & Bambra, 2007; Giovannetti & Wolff, 2010); however, in the caregiving literature, it is broadly understood to refer to individuals providing care for someone in need of support. In a review of sibling research, Heller and Arnold (2010) examined the dimensions of caregiving. Some studies defined caregiving more formally including coresidence with the brother or sister (Freedman et al., 1997) or legal guardianship (Krauss et al., 1996). Other studies described caregiving more informally (e.g., providing companionship) (Orsmond & Seltzer, 2000). As both current and anticipated caregivers are likely to be involved siblings, we would expect that both groups of siblings would feel invested in their degrees of caregiving. However, caregiving responsibilities and expectations change over time (Hodapp, Glidden, & Kaiser, 2005). By understanding how caregiving responsibilities differ between anticipated and current caregivers, more realistic expectations for caregiving can be developed.
Along with the definition of caregiving, the rewards and challenges of caregiving may be related to the type and amount of caregiving. Most siblings report having close and enjoyable relationships with their brother or sister with disabilities (Hodapp, Urbano, & Burke, 2010; Orsmond & Seltzer, 2000); however, the rewarding nature of sibships may differ between current and anticipated sibling caregivers. For example, parents tend to be overprotective of their children with IDD (Beck, Daley, Hastings, & Stevenson, 2004). On becoming caregivers, siblings, however, may be less protective than their parents were, thereby enabling the family member with IDD to be more independent. Watching the independence of the brother or sister with IDD could be rewarding to the sibling. By contrast, for siblings who anticipate caregiving, their interactions with their brothers and sisters may be temporary and short (Koch & Mayes, 2012). Their visits with their brothers and sisters may be rewarding because of the respite it provides for their parents. By identifying rewards, protective factors can be capitalized on so siblings reap the maximum benefits from their sibships.
Similar to rewards, anticipated and currently caregiving siblings may experience some similar and some different challenges. Both types of caregiving siblings, for example, may struggle with the maladaptive behaviors of their brothers and sisters (Hodapp & Urbano, 2007). Different challenges may also be present for anticipated and currently caregiving siblings. Many siblings have reported that their parents did not include them in future planning (Heller & Kramer, 2009). As a result of the lack of planning, these siblings may feel uncertain about their futures. The lack of future planning, however, may not be challenging to current caregivers because they have already transitioned into the caregiving role. Alternatively, siblings who are caregivers, may struggle in accessing and retaining quality adult disability services for their brothers and sisters (Holl & Morano, 2014). By identifying the unique challenges faced by siblings who are current and anticipated caregivers, targeted interventions can be developed.
One way to help alleviate some of the challenges may be paid caregiving. Individuals with IDD may receive Home and Community Based Support Waivers. On receiving the waiver, an individual with IDD may choose to hire a personal support worker (Schore, Foster, & Phillips, 2007). In some states, family members of the individual with IDD can be personal support workers, enabling them to be paid. Because of the nature of caregiving, caregivers of individuals with IDD (versus noncaregivers), are less likely to be employed (Seltzer, Greenberg, Floyd, Pettee, & Hong, 2001) and, subsequently, may be affected financially. Paid caregiving offers one way to relieve the fiscal tax of caregiving. However, not all siblings may feel similarly about paid caregiving. Anticipated caregiving siblings who do not currently provide care may have an abstract concept of caregiving with little understanding of the resources needed to conduct actual caregiving. Thus, siblings who anticipate caregiving responsibilities may feel that paid caregiving is unacceptable. In contrast, current caregivers may embrace paid caregiving. To determine the value and utility of paid caregiving, it is essential to compare the perspectives of current and anticipated caregiving siblings.
The purpose of this study was to examine the differences between siblings who are currently caregivers for their brothers and sisters with IDD and siblings who do not currently (but expect to) provide caregiving to their brothers and sisters. For this study, we were interested in how current and anticipated caregiving siblings differed with respect to three research questions: (1) What kind of caregiving do siblings provide?; (2) What are the rewards and challenges of caregiving?; and (3) How do siblings feel about being paid caregivers? We hypothesized that current (versus anticipated) caregiving siblings will provide more formal (versus informal) caregiving, feel rewarded by the growing independence of their family member, experience challenges with respect to the adult service delivery system, and be more positive about paid caregiving. To answer our research questions, we conducted six focus groups in three different states with adult siblings of individuals with IDD.
We used focus group interviews for this study. Focus groups allow researchers to elicit information from a group of individuals with a shared commonality (e.g., a brother or sister with IDD) (Krueger & Case, 2000). We chose to conduct focus groups so the participants could share ideas with each other (Marshall & Rossman, 1995).
To be included in the study, participants needed to have at least one brother or sister with IDD, provide some degree of caregiving for their brother or sister, and be over 18 years of age. Because there is no agreed-on definition of caregiving (Dahlberg et al., 2007; Giovannetti & Wolff, 2010), we had a broad definition of caregiving requiring that the participant provide some degree of care to the brother or sister with IDD. Focus group participants were recruited from three states (Ohio, Illinois, and Wisconsin) where well-established sibling organizations were in place. We identified a key figure within each state's sibling organization to help recruit participants. The key figures enabled us to develop a recruitment plan with respect to their communities (Fetterman, 1989). The figures also attended most focus groups, thereby providing a sense of openness in the focus group sessions (Stewart & Shamdasani, 1990). A variety of personal contacts and social media resources were used to recruit participants. Interested participants contacted the investigators to register for the focus group. There was no financial incentive for participation. Forty-two adult siblings of individuals with IDD were screened, consented, and ultimately completed the study.
After data were collected, the sibling sample was divided into two groups: (1) current caregivers who provided care for their brother or sisters with IDD and (2) anticipated caregivers who did not provide care on a regular basis but expected to be caregivers in the future. To distinguish the groups, we used information captured on our demographic sheet. On the demographic sheet, participants were asked “Do you provide caregiving for your brother or sister with a disability?” If the sibling responded “yes,” the sibling was labeled as a “current” caregiver. If the sibling responded “no,” the sibling was labeled as an “anticipated” caregiver. In the focus groups, all “anticipated” caregivers stated that they expected to be caregivers in the future. Still further, only “current” caregivers were legal guardians of their brothers and sisters. A similar method has previously been used to classify varying levels of caregiving (Burke et al., 2012).
We also asked about the degree of caregiving needed by the brother or sister with IDD. In the demographic sheet, we asked “To what extent, does your brother or sister with a disability require caregiving?” This question had three potential responses: not at all (1), somewhat (2), or to a great extent (3). All participants responded that their brothers and sisters required caregiving o either “somewhat” or “to a great extent.” The mean score for this question was 2.44 (SD = .51); there were no significant differences between the groups with respect to the amount of caregiving needed (see Table 1).
Data were collected from the participants in two ways: (1) an information sheet and (2) a semi-structured focus group protocol. The information sheet included demographic characteristics about each participant. Questions included educational background, age, race, gender, and proximity between siblings.
To develop the interview protocol, we completed an extensive literature search (e.g., Burke et al., 2012; Greenberg et al., 1999; Heller & Arnold, 2010; Hodapp, Urbano, & Burke, 2010; Orsmond & Seltzer, 2000). We then developed an initial focus group protocol. We asked members of the Sibling Leadership Network to review the protocol and provide feedback. We considered their feedback, and the protocol was revised. On revision, the protocol and the study itself were approved by the Institutional Review Board (IRB). We piloted the focus group protocol with three adult siblings of individuals with IDD. Correspondingly, we made small changes. The semi-structured protocol allowed for flexibility so that participant responses could guide the discussion. See the Appendix for the focus group protocol.
All authors conducted at least one focus group. At each focus group, the facilitator was also the sibling of a person with IDD and thus provided a shared experience with the participants (O'Toole, 2013). We held three focus groups in Illinois, two focus groups in Wisconsin, and two focus groups in Ohio. With the aid of each sibling organization, we held the focus groups in private and convenient locations. All questions on the protocol were asked during each focus group. Notes were taken at each focus group, which were audiorecorded and transcribed. Focus groups lasted, on average, 1.5–2.0 hr.
Focus group size ranged from three to eight siblings. Focus groups were mixed; each group included both current and anticipated caregiving siblings. Prior to the focus group, participant identified themselves as current or anticipated caregivers on the demographic sheet. In our member checking, none of the participants indicated that the label of current versus anticipated caregiver misrepresented them. At the beginning of each focus group, the facilitator read a script detailing the purpose of the study, explaining the consent forms, and emphasizing the importance of maintaining the privacy of the dialogue. At the end of each focus group, the facilitator reviewed the themes shared by the participants to conduct member checking. Participants were asked to validate, add, or change any of the themes.
We used constant comparative analysis to code themes in the focus group transcripts. Initially, all investigators independently read the focus group transcripts to become familiar with the data (Tesch, 1990). Then, each author independently coded the text. We read the transcripts numerous times using a line-by-line approach analysis. Each piece of data was compared with all of the other data (Creswell, 2003), highlighted, and notated with a code. In response to challenges with caregiving, for example, codes included finding appropriate residential placement, receiving individualized employment supports, and fighting for quality services. New data were constantly compared to previously coded data to see if the new data represented a new idea or should be a part of an existing code. For current caregivers, we had 38 codes; for anticipated caregivers, we had 44 codes.
We then compared the codes, resolved differences, and developed definitions for each code. All investigators agreed on the definitions for each code. Independently, we returned to the focus group transcripts to recode the data using the agreed-on definitions. Then, we met to debrief about the codes. We organized the codes into themes. For example, the previously mentioned codes (i.e., finding placement, employment supports, and quality services) were placed within a theme of “securing quality services.” We had six themes which were shared among the current and anticipated caregivers. For currently caregiving siblings, we had eight themes; for siblings who anticipated being caregivers, we had nine themes. We compared the themes with our notes from the focus groups. We also searched for negative cases to further refine themes (Brantlinger, Jimenez, Klingner, Pugach, & Richardson, 2005).
At the end of each focus group, the facilitator reviewed the main themes shared by the participants to conduct member checking. Participants were asked to validate, add, or change any of the themes mentioned by the facilitator. We also e-mailed each participant the list of themes. We received no changes from the participants. By member checking, we allowed the participants to assess the validity of our findings (Guba & Lincoln, 1989). In addition to member checking the data with our participants, we also debriefed with one another. Each author separately coded the data and, subsequently, reanalyzed the data after the debriefing.
The purpose of our study was to compare the perspectives of anticipated and current caregiving siblings with respect to: caregiving responsibilities, the rewards and challenges of caregiving, and attitudes toward being paid caregivers. In the following sections, we highlight similarities and differences between current and anticipated caregivers (see Table 2).
Both caregiver groups were enormously knowledgeable about and invested in their brothers and sisters. Because of their close sibling relationships and the amount of time they spent with their brothers and sisters, 66.7% (n = 28) of current and anticipated caregivers felt they possessed important information about their brothers and sisters. One sibling explained,
Even my mom will ask me “What is he signing?” and I know because I see so much of him. I see everything he does in a 24-hour span or 16-hour span. We watch TV, we watch movies, we have conversations and so I retain all of this knowledge about him.
In addition to knowledge, 50% (n = 21) of siblings reported feeling invested in their brothers and sisters. As one sibling stated, “I feel a responsibility to my brother. Also, I love him. I want to be around him.” Although the current and anticipated caregiving siblings both expressed commitment to their brothers and sisters, they had different caregiving responsibilities.
Current caregiver responsibilities
Among the current caregivers, 60% (n = 15) noted their roles as guardians. All of the siblings who were legal guardians were also current caregivers. In discussing guardianship, current caregivers mentioned the exorbitant fiscal cost of retaining guardianship, as well as the time-consuming paperwork involved. In the following paragraphs, we describe an exchange between current caregivers about guardianship:
Current Caregiver 1: This past 2 years of being guardian has been a learning process. I am still learning.
Current Caregiver 2: I am doing all of the guardianship work. All of the court reporting, financial, and then medical needs, which is taking an awful lot of time now.
Siblings felt that guardianship and its related tasks were caregiving responsibilities.
In addition to guardianship, 52% (n = 13) also mentioned navigating the adult disability service system on behalf of their brothers and sisters. One current caregiver described her experience in stating, “I helped him get the level of funding that he has. I coordinate his services. I keep in touch about what is going on with him at the day program, what is going on at home, what is going on with his health.” Current caregivers reported navigating multiple service systems for financial, medical, residential, and employment matters. One sibling stated,
I am arranging services and dealing with her financial matters. And I take her to doctors' appointments. And the reality is that we are taking care of her and making sure that services are in order and we are meeting her needs. … It is overwhelming.
For current caregivers, the coordination of services comprised part of their roles.
Finally, 40% (n = 10) described the extended amounts of time they spent engaging in recreational and daily living activities with their brothers and sisters with IDD. With respect to recreational activities, one sibling stated,
If there is an event, I am getting tickets and taking him. If there is any sort of activity where it involves us going somewhere and planning, I am taking him. Disneyworld. We went [there] in June. …. It was 4 days just the two of us. I can't picture my mom doing that. And I am not saying it's wrong or right, it's just the way it is.
Current caregivers also emphasized their involvement with activities of daily living. Depending on the level of independence of the person with a disability, many siblings provided assistance with direct care. Activities included providing transportation, helping with laundry, ensuring proper hygiene, showering, toileting, and preparing meals. One sibling described her assistance to her brother, “helping to tuck him in at night and cutting his food. And clipping his nails … just daily living things he needs assistance with, washing himself and shaving himself.” Current caregivers reported spending time in leisure activities and direct care.
Anticipated caregiver responsibilities
Among the siblings who anticipated caregiving, 52.9% (n = 9) mentioned participating in social outings with their brothers and sisters; this time was viewed as respite for their parents. Outings included going to the movies, weekend sleepovers, and sporting activities. Many anticipated caregivers mentioned looking forward to spending time with their brothers and sisters and enjoyed being able to “hang out.” They also discussed the importance of providing respite for their parents. Summarized by one participant,
It's respite type stuff. If my parents go out of town, then he stays the weekend with me. Or I am the behavioral reward so if he does good at school for the month, he gets to spend the night at my place.
Anticipated caregivers viewed social outings as part of their responsibilities.
Additionally, 23.5% (n = 4) of anticipated caregivers also reported finding resources for their parents about their brothers and sisters. As described by one anticipated caregiver,
I provide information and resources that my family can use. For example, she [my sister] was being discriminated at her job and it looked like she was going to be fired and her supervisor wasn't treating her fairly … so I got information so that didn't happen.
In addition to gathering information, the role of coordinating communication between family members was also noted. One sibling stated, “I met other siblings and realized that some families, when they don't talk about things, it leads to a crisis so that made me turn to my family and say we need to start planning for the future in a more specific way.” By providing information and starting a family dialogue, anticipated caregivers felt they were providing caregiving to their brothers and sisters.
Among the anticipated caregivers, 17.6% (n = 3) discussed the importance of providing emotional support to their brothers and sisters. In providing emotional support to her sister with IDD, one anticipated caregiver stated, “We talk on the phone once a week and I kind of talk through things in terms of advice or problem solving.” Especially among the siblings who lived out of state from their brothers and sisters, they provided such emotional support.
As a reward, 52.4% (n = 22) of participants from both groups reported “bonding with” their brothers and sisters with IDD. Put succinctly by one sibling, “My sister is my buddy…. It [caregiving] created a bond.” Siblings reported enjoying spending time with their brothers and sisters. As one sibling stated, “He is my buddy and we understand one another.” Also, 42.8% (n = 18) of siblings mentioned enjoying the personalities of their brothers and sisters. As reported by one sibling, “It is just that his personality makes you want to spend time with him. … He makes anything fun because that is how he is.” Although both groups of siblings enjoyed spending time with their brothers and sisters, they also experienced different caregiving rewards.
Current caregiver rewards
Among the current caregivers, 52% (n = 13) expressed the rewarding nature of watching their brothers and sisters become more independent. Siblings mentioned enjoying watching their brothers and sisters “blossom” and “grow.” One sibling stated, “One of the most fulfilling things is just watching my sister blossom.” Other siblings reflected that, once their parents were no longer caregiving, their brothers and sisters became more independent. One sibling stated, “My sibling does more now than when our parents were involved.” Siblings felt watching their brothers and sisters become independent was rewarding.
Anticipated caregiver rewards
Perhaps in part because many anticipated caregivers provided respite for their parents, 17.6% (n = 3) found caregiving rewarding because it allowed them to provide a break to their parents. When talking about providing respite for their parents, one sibling stated, “She [the sister with IDD] is really at odds with my parents right now so I think it is good for them to have a little mental break sometimes. So, we convince her to come over.” By providing their parents respite, anticipated caregivers felt rewarded.
Both groups of caregivers reported challenges about caregiving. Among caregivers, both current and anticipated, 19.0% (n = 8) mentioned difficulty about addressing problem behaviors of their brothers and sisters. Behaviors included tantrums, noncompliance, and stubbornness. One sibling described her sister's noncompliance:
The most frustrating thing is that when you know there is something that needs to be done but she doesn't want to cooperate. The case in point being that she can walk but she doesn't want to. So, she is in a wheelchair.
Even though current and anticipated caregivers shared challenges in addressing behavior, they also experienced some different challenges.
Current caregiver challenges
Of the current caregivers, 60% (n = 15) reported frustration about ensuring that their brothers and sisters qualified for adult disability services. They struggled to find information about funding mechanisms, identify resources, understand bureaucracies, and navigate the service system. Although current caregivers recognized that there must be regulations about qualifying for services, they also felt that the rules were not always fair. Relatedly, many current caregivers indicated that the bureaucracies of provider agencies were difficult to navigate. As one current caregiver stated,
It is very frustrating that sometimes you run into that brick wall with bureaucracy and no matter how much logic and common sense you try to apply to the situation, they say “This is the rule. This is the law.” I find that very frustrating.
Securing services was noted as a challenge for many of these siblings.
After qualifying for services, 48% (n = 12) of the current caregivers reported challenges in retaining quality services for their brothers and sisters. One current caregiver described her challenges in securing quality care for her sister,
Fighting for the quality [of services] is probably the crux of the battle because there may be care available, but some care is not really caring. So, constantly fighting for what is really the best is a major challenge.
Many siblings told stories of abuse, neglect, and theft in the homes of their brothers and sisters. As such, siblings reported that they needed to closely monitor the services their family member received. Summarized by one sibling, “It is a constant battle to stay on top of it [services].” Thus, in addition to securing services, current caregivers struggled to retain quality services.
Additionally, 36% (n = 8) current caregivers struggled because they were the primary caregivers. Many caregivers reported that their other family members did not help with caregiving responsibilities. One current caregiver stated, “The fact that I feel like it is all on me. … It is frustrating having another brother that isn't so much a part of things.” These siblings reported feeling alone in their caregiving journey. Some current caregivers, however, mentioned a potential support: their spouses. Yet, siblings-in-laws also proved to be a challenge. These siblings felt that it was difficult to include their spouses in caregiving decisions. As one sibling stated, “They [spouses] married into this and then it changed. And there is a lot of time that we don't have for them.” Siblings reported feeling guilty for the time they spent caregiving for their brothers and sisters versus their marriages.
Anticipated caregiver challenges
Of the anticipated caregivers, 47% (n = 8) spoke about challenges regarding the uncertainty of the future. Many siblings mentioned that, currently, they did not have challenges with caregiving; however, they struggled with anticipating their future roles as caregivers. When talking about challenges, one anticipated caregiver cited “trying to understand what my sisters and I will have to do in the next few years. We have to piece together what my parents have been doing.” Siblings worried about the challenges related to future planning and transitioning to caregiver roles.
Another challenge mentioned by 29.4% (n = 5) of the anticipated caregivers was understanding the service system. Although these siblings were not at the point of navigating the service system, they worried about eventually securing services for their brothers and sisters. Siblings compared their anticipated challenges to their parents' experiences,
Anticipated Caregiver 1: I feel like my parents have lived and breathed it [advocating for services] from Day 1 with my sister. They know it in a way that I will never really know it. So that learning curve is hard for siblings because a lot of times we come in later and it is really difficult to figure out the complicated service system and how to navigate it to get the support that our siblings need.
Anticipated Caregiver 2: I feel like it must be exhausting enough to do the caregiving but then to have to fight the system on top of it!
Although not current caregivers, participants felt apprehensive about adult disability services.
Some (11.8% or n = 2) anticipated caregivers reported feeling guilt with respect to their brothers and sisters. One sibling felt guilty that she lived too far away from her sister, “Being so far away, I feel a lot of guilt and that has been really challenging.” Other anticipated caregivers expressed guilt as their brothers and sisters began to realize their differences. One sibling stated, “The hard part for us, is her [the sister with IDD] realizing that there is something different [about her] but not comprehending what exactly is different.” Guilt was a common challenge among anticipated caregivers.
Getting Paid to Provide Care
Both current and anticipated caregivers had similar responses about paid caregiving. In both caregiving groups, some (23.8% or n = 10) siblings mentioned that paid caregiving was acceptable depending on the amount and type of caregiving provided, as well as the expense involved. One sibling stated, “If you have to do a lot of driving and have a lot of expenses, then I would see an expense reimbursement … but to actually be paid by the hour, that doesn't feel right.” Also, some (11.9% or n = 5) current and anticipated caregiving siblings stated that it was unacceptable to be a paid caregiver. One sibling stated “I just don't feel right about taking that money.” Although there were similarities between the groups, current and anticipated caregivers also expressed different perspectives about paid caregiving.
Current caregiver opinions of paid caregiving
Some (60% or n = 15) current caregivers were positive about being paid to provide care. Siblings expressed that, if available, they would accept payment for their caregiving. One sibling stated, “I would be totally fine being paid for it [caregiving]. I would work less and help him [the brother with IDD] more.” Other current caregivers mentioned their own experiences as paid caregivers. Siblings discussed:
Current Caregiver 1: When I became an independent provider, it was more than I could have dreamed of … I really wanted a real job. … The state of Ohio paying their providers made it able for me to work for myself from 2007 to last year to pay my daughter's tuition for college. She is now a neurosurgeon.
All other siblings clap for Current Caregiver 1.
Current Caregiver 1: I could not have done it without my sister providing my income.
Current Caregiver 2: That was a great blessing.
The majority of current caregivers were comfortable with paid caregiving.
Anticipated caregiver opinions of paid caregiving
Some (29.4% or n = 5) anticipated caregivers were adamantly against receiving payment for their caregiving. Many anticipated caregivers questioned the idea of payment. One anticipated caregiver said, “Why should I get paid for having a chill night with my sister?” Many siblings stated that they would feel guilty getting paid to provide caregiving. Some respondents felt that funding should be used for other services, not to pay the sibling. One anticipated caregiver stated, that the funding would be “better used for someone or something else. I would feel guilty.” These anticipated caregivers argued that they should not be paid providers to their siblings.
Other anticipated caregivers (17.6% or n = 3) felt ambivalent about paid caregiving. They reported that caregiving is not a job, it is a familial responsibility. As one anticipated caregiver stated, “I enjoy being with my brother and don't look at it as a job.” Other anticipated caregivers reported that they were not opposed to being paid; however, regardless of payment, they would still provide caregiving to their brother or sister with IDD. As one anticipated caregiver noted, “If I get paid, it's a blessing. But I would do it either way.” For these anticipated caregivers, payment did not affect their expectations for caregiving.
This study provides a glimpse into the similarities and differences between adult siblings who are (versus expect to be) caregivers for their brothers and sisters with IDD. Using a large sample (N = 42) of adult siblings across three states, we demonstrated that there are similarities and differences between current and anticipated caregiving siblings. In the following sections, we outline our findings with respect to caregiving responsibilities, rewards, challenges, and paid caregiving.
First, we found that current and anticipated caregiver siblings provided different kinds of caregiving to their brothers and sisters. Consistent with previous research about caregiving, currently caregiving siblings performed more formal responsibilities including guardianship and navigating the adult disability service system (Krauss et al., 1996). Conversely, anticipated caregiving siblings provided informal support including advice giving and engaging in social outings. Such informal support also aligns with previous research about caregiving (e.g., Orsmond & Selzter, 2000). In examining the differences in caregiving responsibilities, it seems that caregiving may become more formal as siblings transition into caregiving roles. The dynamic nature of caregiving supports the importance of studying siblings across the lifespan (Hodapp et al., 2005). Also, similar to the larger caregiving literature (Dahlberg et al., 2007; Giovannetti & Wolff, 2010), there was no clear consensus about caregiving responsibilities.
Consistent with prior research, both groups of siblings felt their sibling relationships were rewarding (Hodapp et al., 2010; Orsmond & Seltzer, 2000); however, there were also differences between the groups. Most previous research about siblings of individuals with IDD has focused on the negative implications (Hodapp et al., 2005). However, our findings illustrate that the rewards of sibships not only continue but also change as siblings transition to caregiver roles.
By identifying the components of the rewarding nature of sibships, these rewards can be capitalized on to reduce anxiety about future planning. Siblings who anticipate providing care cite the uncertainty about the future as a primary challenge. Indeed, many siblings are not included in future planning (Heller & Kramer, 2009) To help alleviate the concern about the future, siblings who are not currently providing care should know that, as they transition to caregiving roles, their brothers and sisters with IDD may be afforded more opportunities and become more independent. In this way, anticipated caregiving siblings may feel comforted that their eventual caregiving may benefit their brothers and sisters with IDD.
Both groups of siblings reported some similar as well as different challenges. From both groups, siblings expressed frustration when addressing behavior problems of their brothers and sisters. Anticipated caregiving siblings also reported the uncertainty of the future whereas current caregivers felt alone in their caregiving. Although spouses were referenced as potential sources of support, current caregivers struggled to include them in their caregiving decisions. The lack of inclusion in caregiving discussions has been described in studies about siblings-in-law. In a recent qualitative study, the siblings-in-law of individuals with IDD reported feeling left out of important discussions about caregiving (Vanhoutteghem, Van Hove, D'haene, & Soyez, 2014). Given the effect of caregiving on the sibling and the sibling-in-law, it seems necessary to include spouses in discussions about caregiving. By including spouses in caregiving dialogues, currently caregiving siblings may not feel so alone in their caregiving journeys.
Regarding paid caregiving, current and anticipated caregiving siblings had mixed responses. From both groups, some siblings felt that paid caregiving may be acceptable; also, some siblings from both groups felt paid caregiving was unacceptable. In the current caregiver group, though, there were respondents who had been paid caregivers.
Similar to previous studies demonstrating that siblings may not be able accurately anticipate their roles in future caregiving (e.g., Freedman et al., 1997), anticipated caregiving siblings may not be able to accurately predict their feelings about paid caregiving. Anticipated caregiving siblings may have abstract ideas about their eventual caregiving roles (Liberman & Trope, 2008; Trope & Liberman, 2003); not experiencing the day-to-day responsibilities of being a caregiver, these siblings may not understand the time and cost involved in providing caregiving. In contrast, because current caregivers face the logistics of caregiving, including less time for their own employment (Seltzer et al., 2001), these siblings may better understand that paid caregiving is a needed option.
The difference in opinions about paid caregiving may demonstrate that anticipated caregiving siblings may not accurately predict their caregiving responsibilities. Similar to the co-residence with the brother or sister with IDD, siblings may initially think they are going to provide free caregiving; however, when transitioning into caregiving roles, siblings may realize that they need to be paid caregivers. This finding has important implications for sibling research. Past research (i.e., Burke et al., 2012; Greenberg et al., 1999; Krauss et al., 1996) about siblings and caregiving has relied on the predictions of siblings who expect to be caregivers. However, given that anticipated caregiving may inaccurately predict their caregiving roles, future research may need to examine currently caregiving siblings to more accurately understand the responsibilities, rewards, challenges, and experiences of sibling caregivers.
Although this study has several important implications, a few limitations should be mentioned. First, the participants were primarily white and female. A longstanding obstacle in family research is to include more heterogeneous samples with respect to race and gender (Hodapp et al., 2005). Another limitation of this research is the lack of inclusion of the person with a disability. Future research should include both perspectives—of the person with IDD as well as the sibling—to ensure they reflect one another's insight. Also, because the focus groups included both anticipated and current caregivers, it is possible that siblings may have heard the opinion of another participant and claimed to agree even though the idea was not his/her own. Additionally, not all states may allow family members (e.g., siblings) to be paid caregivers; as such, the generalizability of this study may be limited. Also, to increase generalizability, future research should recruit participants from various sources. In light of the small sample size in this study, future research may include more participants and attempt to quantitatively discern the differences between current and anticipated caregivers.
Directions for Future Research
Given the differences between current and anticipated caregiving siblings and the cross-sectional nature of this study, future studies may include longitudinal research to examine how the sibling caregiving role changes over time. An ecological and transactional developmental approach may better suit the study of caregiving to discern changes with age (Heller & Arnold, 2010). Additionally, longitudinal research could shed light on potential challenges related to caregiving among older sibling caregivers. Based on this study, it seems that the perspectives toward paid caregiving, for example, may change over time. Using longitudinal research, we could better assess whether feelings toward paid caregiving change.
Additionally, researchers may develop and examine the effectiveness of an intervention to support sibling caregivers. Siblings may feel alone in providing care to their brothers and sisters with IDD. When sibling caregivers feel that their other brothers and sisters without disabilities do not share caregiving responsibilities, primary sibling caregivers may experience worse well-being (Ingersoll-Dayton, Neal, Ha, & Hammer, 2003). As such, it may be necessary to develop a research-based intervention for currently caregiving siblings.
Implications for Practice
One implication of this study relates to the concern about future planning. Among the anticipated caregiving siblings, a common challenge was the lack of knowledge or certainty about their caregiving roles in the future. Indeed, siblings are frequently not included in future planning (Heller & Kramer, 2009). One way to address future planning is by participating in training about future planning. For example, The Future Is Now is a research-based curriculum that has been used to support aging caregivers and adults with IDD plan for the future (Heller, Caldwell, & Hasazi, 2006). By adapting The Future Is Now for siblings and their brothers and sisters with IDD, siblings may experience less challenges in future planning.
Another implication related to future planning concerns the increased independence of the brother or sister with IDD. Current sibling caregivers enjoyed watching their brothers and sisters become independent. The rewarding experience of watching their brothers and sisters “grow” could be shared in future planning workshops for parents. In addition to the importance of anticipating caregiving siblings knowing that their eventual caregiving may positively impact their brothers and sisters, this reward may also impact parents of individuals with IDD. Siblings frequently report that their parents refuse to discuss future planning (Heller & Kramer, 2009). By knowing that their adult children with IDD are likely to become more independent and that their adult children without IDD enjoy this aspect of caregiving, aging parents may be less apprehensive in engaging in future planning.
This study provides a jumping-off point to discern the differences between current and anticipated caregiving siblings. Using a large sample of adult siblings, we identified differences between current and anticipated caregiving siblings with respect to caregiving responsibilities, rewards, challenges, and perspectives about paid caregiving. By better understanding the different viewpoints of these siblings, we can differentiate interventions.
We would like to thank Dr. Robert Hodapp for his review of this manuscript. This article was supported in part by a National Institute on Disability and Rehabilitation Research post doctoral grant (H133P110004).
Focus Group Protocol
We are about to begin our focus group. Before we begin, please remember that all responses here are confidential. To that end, we will not be using names to address ourselves. Feel free not to answer any questions. You can withdraw from the focus group at any time. Also, we may disagree in this focus group. It is all right to have different opinions than someone else. We just need to ensure that everyone has the opportunity to speak if they so choose. Although we ask everyone in the group to respect everyone's privacy and confidentiality, and not to identify anyone in the group or repeat what is said during the group discussion, please remember that other participants in the group may accidentally disclose what was said.
Please tell the group a little bit about yourself, family, and sibling.
Please share a bit about your experience, as an adult, providing direct care giving services to your brother/sister.
What is there about care giving that you find rewarding and/or challenging?
As an adult, how did you get involved with direct care giving?
How do you feel about adult siblings getting paid to provide care to their brother/sister with a disability?
As a caregiver, paid or otherwise, what type of information, support, guidance, etc. would help you be more effective?
What advice would you give other adult siblings who might be interested in providing direct care, for pay or not, to their brother/sister with a disability?
What would be some ways of reaching out to and informing adult siblings that they can get paid for care giving? How did you find out funding was available or locate an agency to work for?
Why do you think siblings typically make good care givers for their brothers/sisters, as well as others with disabilities?
What care giving skill(s) would you like to improve?
Meghan M. Burke, Department of Special Education, University of Illinois at Urbana-Champaign; Thomas Fish, Nissonger Center, Ohio State University; and Kathy Lawton, Upper Arlington City Schools, Ohio.