We conducted a comprehensive literature search using various electronic databases, including PsycINFO, PsycARTICLES, Dissertations & Theses (on ProQuest), ERIC (Education Resources Information Center), International Bibliography of the Social Sciences (IBSS), Sociological Abstracts, Google Scholar, PubMed, and Cairn Info. The following combination of words was used to conduct the systematic review search: “Siblings” OR “Brother,” OR “Brothers” OR “Sister” OR “Sisters” OR “Fratrie” OR “Frère” OR “frères” OR “sœurs” OR “Soeur” AND (“Sourdaveugle” OR “Sourd-aveugle” OR “Surdicécité” OR “Deaf-blind” OR “Deafblind” OR “Deafblindness” OR “Dual Sensory loss” OR “dual sensory impair” OR “Dual sensory impairment” or “Dual sensory disability” OR “Usher Syndrome” OR “Wolfram Syndrome” OR “Stickler Syndrome” OR “Charge Syndrome” OR “Alport Syndrome” OR “Bardet-Biedl Syndrome” OR “Rubella” OR “Cockayne Syndrome” OR “Cornelia de Lange Syndrome” OR “Flynn-Aird Syndrome” OR “Goldenhar Syndrome” OR “Deaf-blind Hypopigmentation Syndrome”).

Studies were included in the review if they were (1) written in English or in French languages (two languages spoken by the authors), (2) published in a peer-reviewed journal/ published dissertation/thesis studies or published reports with no date limits for the publication year (3) explored life experience and/or psychological health and/or social experience of siblings of individuals with deafblindness, and (4) articles mentioning the terms “fratrie” (siblings), “siblings,” “frères” (brothers), “frère” (brother), “sœurs” (sisters), “sœur” (sister).

Studies were excluded from the review if they primarily focused on age-related deafblindness. This exclusion criterion was implemented to ensure that the included studies specifically addressed the experiences of siblings who grew up in the same household as individuals with deafblindness during childhood or adolescence.

The articles selection process was conducted by two authors (first and second author). Here are the 6 steps that we followed for the article selection: (1) Database Retrieval; (2) Duplicate Removal; (3) Title and Abstract Screening; (4) Accessibility Check; (5) Criteria-Based Selection; and (6) Final Selection.

The two authors extracted the selected articles based on their relevance to the inclusion criteria. One author was responsible for categorizing the results into psychological and social consequences, utilizing the definitions provided in the introduction. The second author validated this categorization. Information about the country the research was carried out, the age of the siblings, the type of deafblindness of the siblings, the methodology used in the articles and the bias and limitations presented by the authors of each article were also gathered (Figure 1).

In total, there were five studies conducted in the United States, 1 study in Australia, 1 study in Canada, and 1 study in the United Kingdom. Only four studies directly assessed siblings’ experiences with their siblings with deafblindness. The other three studies examined siblings’ experiences through the perspectives of parents or individuals living with deafblindness.

Rowan (1990) conducted a study in the United States involving 12 siblings of deafblind children from five families. The age range of the siblings in this study was between 7 and 16 years old. Another study in the United States by Laman (2006) focused on four siblings ranging in age from 19 to 22 years old, with a sibling with congenital deafblindness. Harland and Cuskelly (2000) conducted a study in Australia with four siblings from different families. The age range of the siblings in this study was between 21 and 30 years old.

The causes of deafblindness in siblings with this disability were different. We believe it is necessary to clarify this because the experiences of non-disabled siblings may vary depending on the severity of the visual and hearing impairment. Rowan (1990) discussed different conditions, such as cortical visual impairment, profound hearing loss, and associated complications. Laman (2006) focused on congenital deafblindness without specifying the cause. Harland and Cuskelly (2000) explored cases of moderate to profound vision and hearing impairments, often accompanied by intellectual and physical disabilities. Vert et al. (2016) specifically studied individuals with CHARGE syndrome. Watters et al. (2005) investigated both acquired and congenital forms of deafblindness. Ellis and Hodges (2013) examined Usher syndrome, distinguishing between type I, type II, and type III. Finally, Heller et al. (1999) study focused on children with deafblindness without specifiying the various types.

Several studies have adopted qualitative methods to explore siblings’ experiences in the context of deafblindness. Rowan (1990), a graduate student in education, conducted one-on-one interviews with siblings to gain insights into their perspectives. Laman (2006), a doctor in special education, employed semi-structured interviews to examine adult siblings’ perceptions of their involvement in the Individualized Transition Plan (ITP) of siblings with congenital deafblindness. Harland and Cuskelly (2000), two researchers in special education, conducted semi-structured interviews on sibling responsibilities, support, personal development, advocacy, and more topics. Watters et al. (2005), researchers in disability studies, conducted focus groups with individuals with deafblindness, parents/advocates, and interviews with service providers. Ellis and Hodges (2013), researchers in education, employed semi-structured and extensive interviews.

In addition to qualitative approaches, quantitative studies have examined siblings’ experiences with deafblindness. Vert et al. (2016) utilized the Sibling Evaluation Questionnaire, UCLA Loneliness Scale, Network Orientation Scale, Family Hardiness Index, and Family Member Well-Being Index to assess various sibling experiences and well-being aspects. Furthermore, Heller et al. (1999) used a questionnaire to evaluate parents’ perceptions of siblings’ interactions with their brothers and sisters with deafblindness (Table 1).

Several limitations and biases have been identified in the examined studies by the authors of each study themselves, highlighting the importance of considering these factors when interpreting the findings. As an example, an interview may lead to the unintended procurement of socially desirable responses, especially when it is based on voluntary participation (Rowan, 1990; Harland and Cuskelly, 2000; Laman, 2006). Also, as Rowan (1990) mentioned, the understanding of questions by siblings and the author’s interpretation could influence results.

Small sample sizes from specific regions limit the generalizability of the findings (Rowan, 1990; Heller et al., 1999; Harland and Cuskelly, 2000; Laman, 2006; Vert et al., 2016). Additionally, three studies did not directly assess the siblings experience but investigated people with deafblindness’ perspective of their siblings’ experience (Watters et al., 2005; Ellis and Hodges, 2013) or parents’ perspectives (Heller et al., 1999) (Table 2).

Siblings may experience certain negative emotions such as resentment towards their parents, primarily due to the parents’ reduced physical and emotional availability (Watters et al., 2005). Some siblings experienced feelings of exclusion and jealousy due to the additional parental attention given to the child with deafblindness (Watters et al., 2005). For example, in the study conducted by Ellis and Hodges (2013), Bethany (17, type 2) shared her experience of being perceived as the “favorite” among her siblings because she received more attention, which created tension with her sibling. In contrast, another study by Rowan (1990) revealed that nine out of twelve siblings did not perceive their siblings with deafblindness as more fortunate due to the attention or special treatment’ received by the child with deafblindness.

Moreover, in Harland and Cuskelly (2000) study, some siblings expressed guilt over their inability to take a more active role in caring for their disabled sibling. They recognized the burden of care placed on their parents but felt helpless in changing the situation. In this study, one sibling expressed his guilt by saying, “I wish I could do more for Mum because she does do an awful lot.” (p. 300). The same authors noticed that some siblings encounter feelings of anxiety as they grapple with understanding and managing their disabled sibling’s behavior. Interacting with a sibling who has disabilities can indeed present challenges, potentially leading to anxiety and frustration for siblings (Harland and Cuskelly, 2000). Communication barriers, personal insecurities, and the uncertainty surrounding their sibling’s receptiveness to communication may contribute to feelings of exclusion and insecurity (Harland and Cuskelly, 2000).

Also, siblings may experience a sense of inequity and frustration because of the family’s financial problems that are caused by having a child with deafblindness (Watters et al., 2005). Additionally, in Rowan study’s (1990), some siblings mentioned that they felt they bore additional responsibilities which caused frustration and a sense of unfairness. In Rowan study’s, some siblings (3 out of 12) stated they put pressure on themselves to succeed academically or in other areas to compensate for the limitations of their sibling with deafblindness. This self-imposed pressure could contribute to their anxiety. Social embarrassment due to friends’ reactions and questions further exacerbated the emotional toll (Rowan, 1990).

Anxiety may also arise from difficulty envisioning the future. Indeed, sibling disability can significantly impact an individual’s perception of their future, as they envision a lifelong role in the life of the child with deafblindness (Harland and Cuskelly, 2000; Laman, 2006). In Laman (2006) study, all the siblings expressed concerns and anxieties regarding their future roles once their parents could no longer support the person with disabilities. Those results are supported by Harland and Cuskelly (2000) results. In Harland and Cuskelly’s study, some siblings also expressed anxiety and concerns for the future. The siblings recognized the importance of future financial support. They acknowledged that their roles would need to evolve as their parents could not provide primary home-based care for their siblings. Furthermore, many siblings expressed inadequacy in not being able to assume greater responsibility for supporting their siblings. This sense of inadequacy was influenced by various factors, resulting in stress and conflict among most siblings (Harland and Cuskelly, 2000). Time constraints emerged as a concern for five out of twelve of the siblings in Rowan (1990). They expressed worries about having limited time to support their siblings with disabilities due to their numerous other commitments.

Furthermore, some siblings experienced deep distress regarding their lack of preparedness for their future responsibilities towards their sibling with deafblindness. Despite the anxiety stemming from their parents’ mortality, all the siblings were willing to assume increased responsibility if necessary to support their siblings with disabilities (Harland and Cuskelly, 2000). In Harland and Cuskelly (2000) study, most siblings were expected to continue their responsibility for supporting their sibling’s personal development. However, some siblings, like Phillip (a sibling interviewed by Harland and Cuskelly, 2000), doubted their ability to take on teaching responsibilities themselves.

The search for suitable accommodation for their sibling with deafblindness was identified as a significant concern for some siblings. In Harland and Cuskelly (2000) study, one sibling stated, “There is nothing for the deafblind in the area of job preparation and placement” (p. 302). Another sibling was concerned about her ability to find appropriate accommodation for her sister in the future. Some siblings also expressed anxiety about the level of care their brother or sister would receive in non-family-based supported accommodation settings (Harland and Cuskelly, 2000). Assisting with or managing their sibling’s financial affairs was another responsibility that most siblings anticipated undertaking in the future (Harland and Cuskelly, 2000). Rowan (1990) stated that the worries and concerns expressed by some siblings of children with deafblindness encompassed fears, concerns, worries and anxieties about their sibling’s mobility, mortality, future employment prospects, and access to education (Rowan, 1990).

Harland and Cuskelly (2000) noticed that some siblings expressed previous apprehensions about the potential of having children with disabilities themselves. One participant in their study sought genetic counseling to address this concern, and another one worried that prospective partners might mistakenly assume genetic complications associated with their relationship.

The experience of having a sibling with deafblindness can give rise to a strong need for information among siblings, leading to confusion, incomprehension, and anxiety. Understanding the specific problems faced by the child with deafblindness is another significant concern for siblings. Some siblings expressed desire to gain deeper insights into terminology, causes of the handicap, functioning abilities, caregiving techniques, preferences, and future prospects for their sibling (Rowan, 1990). They may desire to understand the nature and extent of their sibling’s disability in hopes of finding a sense of clarity about what it means to be deafblind (Rowan, 1990). They questioned whether their sibling is truly deaf, blind, or both, highlighting the need for accurate information to dispel misconceptions (Rowan, 1990). In addition to seeking information, siblings recognized their responsibility as advocates for their siblings with deafblindness. They strongly desired to learn more about available services and opportunities, understanding that this knowledge is crucial for their future role. However, the lack of information leaves them uncertain about their sibling’s future plans and legal matters, causing anxiety and a need for clarity (Harland and Cuskelly, 2000). Concerns about future living arrangements and the potential changes in their sibling’s condition further contribute to siblings’ anxiety. Some siblings believed that their sibling with deafblindness may not always live at home, while others believed their sibling’s deafblindness may change over time (Harland and Cuskelly, 2000). In Heller et al. (1999) study, 67% of the parents recognized the siblings’ desire to learn more about interacting and communicating with their sibling with deafblindness, emphasizing the importance of knowledge and understanding in facilitating meaningful connections.

Banta (1979) highlighted the siblings’ greater distress compared to their parents as a result of ineffective coping mechanisms. As Harland and Cuskelly (2000) noticed, siblings relied heavily on their parents for help and guidance in caring for their sibling with deafblindness. They sought assistance in understanding the special attention and care required by a child with deafblindness, learning how to use specialized equipment, effectively communicate, handle emotional situations, and provide proper nourishment (Harland and Cuskelly, 2000). To cope with their worries and problems, siblings actively sought emotional support from various sources. Mothers are often their primary confidants, followed by fathers and friends (Rowan, 1990) (Table 3).

Siblings may experience difficulties in interaction with their deafblind brother or sister. Indeed, the presence of communication difficulties related to the nature of the disability, which affects language, makes it difficult for siblings to engage in activities with their sibling with deafblindness (Heller et al., 1999; Watters et al., 2005). Communication is an important aspect of the sibling relationship that often needs adjustments and adaptations, commonly achieved through augmentative and alternative methods of communication. In the case of siblings with a brother or sister with deafblindness, it has been observed that they mostly rely on nonsymbolic forms of communication to interact. However, there is a noticeable absence of alternative communication methods, such as tactile or visual communication boards/systems, and limited involvement from professionals in teaching siblings how to communicate with their sibling with deafblindness. Interestingly, most siblings acquired nonsymbolic communication skills independently, as reported by 62.5% of parents and 56.3% of parents of elementary school children (Heller et al., 1999). On the other hand, sign language is predominantly taught by a parent/relative or, in some instances, by a speech therapist, as seen with two older children. Among parents who reported that siblings face communication challenges consistently, those who rely on nonsymbolic forms of communication experienced the greatest difficulty. Additionally, it seems that the nature of these difficulties is influenced by the severity of the impairment and the availability of alternative communication methods (Heller et al., 1999).

In Heller et al. (1999) study, most parents (over 25%) reported that siblings have minimal interaction or deliberately try to avoid their brother or sister with deafblindness. Many parents (22.2%) and parents of elementary school children (16.7%) indicated that siblings never try to engage their brother or sister in any activity. Regarding the duration of sibling engagement, approximately 23.5% of parents and 21.7% of parents of elementary school children reported a daily involvement of 5–15 min, while 20.6% of parents and 26.1% of parents of elementary school children reported spending 30 min to an hour together. However, a notable percentage of parents (14.7%) and parents of elementary school children (21.7%) mentioned that siblings spend less than 5 min with their sibling with deeafblindness, and 17.6 and 8.7% of parents and parents of elementary school children, respectively, stated that no dedicated time is spent between siblings. The frequency of difficulty encountered in playing or engaging in activities together varied among respondents. The majority of parents (44.4%) and parents of elementary school children (41.7%) reported that such difficulties occurred some of the time. When questioned about the siblings’ willingness to make necessary adjustments for their brother or sister with deafblindness to participate in games or activities that require visual perception, a significant percentage of parents (68.6%) and of parents of elementary school children (70.8%) indicated that siblings never made adaptations or only did so on certain occasions. Similarly, for activities requiring hearing, most parents (70.6%) and parents of elementary school children (73.9%) reported that siblings never made accommodations or only did so sometimes.

According to Rowan (1990), siblings of individuals with deafblindness play pivotal roles in family dynamics, specifically in caring for and supporting their sibling with deafblindness. In Rowan (1990), a majority (eight out of twelve) indicated that their parents expected them to take on additional responsibilities due to the presence of a sibling with deafblindness. These responsibilities span from babysitting their deafblind sibling and other siblings, assisting younger siblings with chores, bathing, feeding, changing diapers, dressing, providing tracheostomy care, engaging in playtime, attending to the child’s needs during the night, cooking, and undertaking household to outdoor tasks. This underscores the heightened responsibility these siblings’ experience, with two of the twelve respondents citing exclusive household roles arising from their deafblind sibling’s needs (Rowan, 1990). Additionally, six of eleven siblings noted their caregiving role was more extensive than their peers’ involvement with their own siblings. However, ten out of twelve siblings perceive their parents’ rules as fair, indicating a balanced approach to managing family dynamics. Concerning knowledge and skills, six out of twelve siblings reported being adequately equipped to assist their sibling with deafblindness (Rowan, 1990).

In Heller et al. (1999) study, parents characterized the relationship between siblings and the child with deafblindness as “helping.” The study revealed that while mothers were the primary caregivers, siblings played a significant albeit secondary role in supporting their brother or sister with visual and hearing impairments. Harland and Cuskelly (2000) found in their study that most siblings provided practical assistance to their brother or sister with deafblindness (e.g., in mobility, recreational activities, and respite care). In some cases, they even took on the role of being a parent for two weeks to give their parents a break (Harland and Cuskelly, 2000). Most siblings offered practical assistance by reinforcing or teaching their brother or sister with deafblindness new skills. One common responsibility shouldered by adult siblings was maintaining regular contact with their siblings with disabilities. In fact, adult siblings maintained regular contact and emotional support, reinforcing or teaching new skills regardless of geographic proximity (Harland and Cuskelly, 2000).

Siblings of children with deafblindness encounter various challenges and disadvantages in their everyday lives. Public attention when accompanying their sibling with deafblindness and crowded living conditions due to special equipment are among the drawbacks (Rowan, 1990). Frequent hospital visits further add to the siblings’ inconvenience and disruption of their personal routine. Another disadvantage is the impact on their participation in family activities, as their sibling’s condition may require adjustments or prevent them from fully engaging in shared experiences (Rowan, 1990). In Rowan (1990), nine out of twelve siblings expressed dissatisfaction with how their brother or sister with deafblindness interfered in their lives. This dissatisfaction was often associated with the inability to implement family plans and activities due to their sibling’s needs (i.e., a parent staying home with the child with deafblindness rather than joining the rest of a family on an outing). Furthermore, four out of ten siblings shared their discontent with their sibling’s impact on their personal plans and activities. These concerns range from being unable to visit friends’ houses or host them at their homes, feeling obligated to be involved with the care of their sibling with deafblindness, and having their activities disrupted due to the responsibility of looking after their other siblings. To address the limited participation in activities, it is recommended, within the literature, to modify the activities to accommodate the vision and hearing loss of the child with deafblindness. This modification can enhance siblings’ ability to participate in and foster meaningful interaction. However, it is worth noting that siblings may lack information on how to effectively modify or identify suitable activities for their siblings with deafblindness (Rowan, 1990).

Rowan (1990) also notes the generally positive and protective attitudes of siblings towards their sibling with deafblindness. Notably, in Rowan (1990) all siblings demonstrated a favorable attitude and actively discouraged any teasing directed towards their sibling with deafblindness. Despite the challenges they may encounter, siblings cited genuine enjoyment/happiness stemming from their relationship with their brother/sister with deafblindness and are committed to safeguarding their well-being when necessary. Among the surveyed, six out of the twelve siblings mentioned that their friends visit their home and engage in various activities, such as playing pat-a-cake, throwing a ball, holding hands, and communicating with the child with deafblindness. On the contrary, six siblings reported that their friends do not come to their homes to interact with their siblings with deafblindness. When explaining their sibling’s condition to friends, five out of the twelve siblings expressed no difficulty conveying the necessary information. Feelings of rejection were minimal (eight out of twelve), with most embracing their sibling’s condition openly, showing unconditional love and acceptance. Several stated they did not wish for their deafblind sibling to be absent, highlighting the depth of their emotional bond (Rowan, 1990).

However, Vert et al. (2016) study found a correlation between siblings’ level of difficulty in engaging with their sibling with deafblindness and their willingness to include them in activities with friends or attend support groups. This suggests the potential benefit of interaction with peers who also have siblings with disabilities (Table 3).

In light of the challenges some siblings face, we recommend providing psychotherapeutic spaces ² to address their needs (Rowan, 1990; Ellis and Hodges, 2013). The research we examined underscores, either explicitly or implicitly, the importance of support and care for siblings in (1) understanding the condition of deafblindness better, (2) expressing their emotions, and (3) acquiring information (Rowan, 1990; Ellis and Hodges, 2013). However, such therapeutic spaces for siblings remain limited, potentially due to a lack of awareness among parents and institutions (Plumridge et al., 2011).

To meet these needs, we recommend employing the Taylor’s Siblings Questionnaire to identify the concerns of siblings of children with deafblindness and tailor interventions accordingly (Rowan, 1990). Professionals like psychologists and psychometricians can facilitate sibling groups and offer a safe environment for siblings to express themselves and develop a deeper understanding of disability-related issues (Pitman and Matthe, 2004; Dufreche Rastello, 2020). Participation in sibling groups has demonstrated numerous benefits, including reduced anxiety, enhanced self-esteem, and improved communication within the family (Heiney et al., 1990; Smith and Perry, 2005; Scelles et al., 2007; Plumridge et al., 2011; Scelles, 2011).

Professionals working with families should acknowledge the impact of disability on both siblings and parents, adopting a comprehensive approach to address their needs (Vert et al., 2016). Support programs should actively involve siblings in crucial educational and transitional meetings and provide sibling workshops to equip them with knowledge and skills (Laman, 2006).

Future studies should incorporate diverse data sources to ensure reliable data collection (Vert et al., 2016). Further exploration of the role of interveners in supporting siblings and the implementation of larger-scale studies will contribute to a deeper understanding of their needs (Vert et al., 2016).

In the context of deafblindness, long-term studies focusing on interventions targeting psychological well-being, orientation and mobility, independence development, transition to adulthood, and sibling relationships are warranted (Rowan, 1990). Additional research is needed to delve into the positive aspects, coping resources, and resilience developed by siblings (Rowan, 1990).

To enhance the generalizability of research, it is recommended to include families from diverse geographical regions and incorporate the perspectives of siblings and children with deafblindness (Rowan, 1990). Conducting longitudinal studies on sibling relationships over time would provide valuable insights, particularly for children with deafblindness. This study highlights the importance of addressing limited interaction or avoidance between siblings and their brother/sister with deafblindness by providing tailored information and support for sibling relationships (Rowan, 1990).

Furthermore, future research should focus on larger and more diverse samples, employ improved methodologies, and directly incorporate siblings’ perspectives to ensure more reliable and generalizable results in the field of deafblindness research.