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Involvement, Readiness for Primary Caregiving, Loneliness, and Self-Efficacy: A Comparison between Adult Sisters and Brothers of Individuals with Intellectual and Developmental Disabilities

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Title: Involvement, Readiness for Primary Caregiving, Loneliness, and Self-Efficacy: A Comparison between Adult Sisters and Brothers of Individuals with Intellectual and Developmental Disabilities
Language: English
Authors: Adi Sharabi (ORCID 0000-0002-7998-1344), Ayelet Siman Tov
Source: International Journal of Disability, Development and Education. 2024 71(2):270-286.
Availability: Routledge. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals
Peer Reviewed: Y
Page Count: 17
Publication Date: 2024
Document Type: Journal Articles
Reports - Research
Descriptors: Foreign Countries, Adults, Intellectual Disability, Developmental Disabilities, Siblings, Sibling Relationship, Gender Differences, Caregiver Role, Participant Characteristics, Readiness, Decision Making, Self Efficacy, Psychological Patterns, Family Involvement
Geographic Terms: Israel
DOI: 10.1080/1034912X.2022.2092602
ISSN: 1034-912X
1465-346X
Abstract: Sisters and brothers play an important role in the lives of their siblings with intellectual and developmental disabilities (IDD), starting in childhood and commonly increasing in adulthood. The current study compared typically-developing adult sisters' and brothers' level of involvement in the care of their siblings with IDD. Beyond this, the study examined differences in sisters' and brothers' readiness for primary caregiving - including their readiness for guardianship and belief in their sibling's independent decision-making, loneliness, and self-efficacy, and how these variables predict their involvement. Participants included 175 Israeli adult (aged 18 years and older) siblings - 118 sisters and 57 brothers of individuals with IDD (Intellectual Disability and/or Autism Spectrum Disorder). The participants completed online questionnaires. Results revealed sex differences, with sisters reporting more social involvement, greater belief in their sibling's ability to make independent decisions, lower levels of loneliness, and higher self-efficacy than brothers. Additionally, hierarchical regression analyses revealed a unique sex difference in predicting siblings' involvement, with readiness for the future role of guardianship positively predicting involvement only among brothers. Variability in sisters' and brothers' involvement needs to be considered when exploring transition planning to primary caregiving, including guardianship and supported decision-making.
Abstractor: As Provided
Entry Date: 2024
Accession Number: EJ1412595
Database: ERIC
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  Value: <anid>AN0175443517;54q01mar.24;2024Feb17.04:11;v2.2.500</anid> <title id="AN0175443517-1">Involvement, Readiness for Primary Caregiving, Loneliness, and Self-Efficacy: A Comparison between Adult Sisters and Brothers of Individuals with Intellectual and Developmental Disabilities </title> <p>Sisters and brothers play an important role in the lives of their siblings with intellectual and developmental disabilities (IDD), starting in childhood and commonly increasing in adulthood. The current study compared typically-developing adult sisters' and brothers' level of involvement in the care of their siblings with IDD. Beyond this, the study examined differences in sisters' and brothers' readiness for primary caregiving – including their readiness for guardianship and belief in their sibling's independent decision-making, loneliness, and self-efficacy, and how these variables predict their involvement. Participants included 175 Israeli adult (aged 18 years and older) siblings – 118 sisters and 57 brothers of individuals with IDD (Intellectual Disability and/or Autism Spectrum Disorder). The participants completed online questionnaires. Results revealed sex differences, with sisters reporting more social involvement, greater belief in their sibling's ability to make independent decisions, lower levels of loneliness, and higher self-efficacy than brothers. Additionally, hierarchical regression analyses revealed a unique sex difference in predicting siblings' involvement, with readiness for the future role of guardianship positively predicting involvement only among brothers. Variability in sisters' and brothers' involvement needs to be considered when exploring transition planning to primary caregiving, including guardianship and supported decision-making.</p> <p>Keywords: Autism spectrum disorder; guardianship; sibling caregiving; supported decision-making</p> <hd id="AN0175443517-2">Introduction</hd> <p>Sibling relationships are one of the most enduring relationships in human life (e.g. Stocker et al., [<reflink idref="bib42" id="ref1">42</reflink>]). Typically-developing sisters and brothers tend to have long-lasting, close relationships with their siblings with intellectual and developmental disabilities (IDD) and consequently, are involved in their sibling's caregiving (Nuttall, Coberly, & Diesel, [<reflink idref="bib29" id="ref2">29</reflink>]; Tomeny, Barry, Fair, & Riley, [<reflink idref="bib44" id="ref3">44</reflink>]). This includes support or care for their siblings with disability, such as involvement in their siblings' social lives (Nuttall et al., [<reflink idref="bib29" id="ref4">29</reflink>]; Tomeny et al., [<reflink idref="bib44" id="ref5">44</reflink>]). Sisters' and brothers' involvement commonly starts in childhood and increases in adulthood, when they are often expected to take an increasing role in caregiving, and commonly become the primary and legal caregivers (i.e. guardians or alternatives) when their parents grow older or die (Casale, Burke, Arnold, Hodapp, & Hodapp, [<reflink idref="bib9" id="ref6">9</reflink>]; Heller & Arnold, [<reflink idref="bib16" id="ref7">16</reflink>]; Nuttall et al., [<reflink idref="bib29" id="ref8">29</reflink>]; Tomeny et al., [<reflink idref="bib44" id="ref9">44</reflink>]). Because of the complexity and the great responsibility that comes with the caregiving role, sisters' and brothers' consistent involvement as part of their preparation towards the caregiving period is essential (Lee, Burke, & Stelter, [<reflink idref="bib22" id="ref10">22</reflink>]). Alongside the positive aspects of the relationship (Rossetti, Lee, Burke, & Hall, [<reflink idref="bib37" id="ref11">37</reflink>]), being a sibling to a child with IDD also can negatively impact the sister's or brother's social-emotional life, such as increasing feelings of loneliness, and there is little research on the latter (Koukouriki, Athanasopoulou, & Andreoulakis, [<reflink idref="bib21" id="ref12">21</reflink>]). At the same time, studies with adults indicate that having stronger personal resources, such as higher self-efficacy, is associated with lower levels of loneliness (e.g. Al Khatib, [<reflink idref="bib1" id="ref13">1</reflink>]). Additionally, research indicates that higher self-efficacy can help sisters and brothers cope with the challenges of being a sibling to an individual with a disability (O'Kane Grissom & Borkowski, [<reflink idref="bib30" id="ref14">30</reflink>]).</p> <p>Studies suggest that sisters and brothers may vary in their level of involvement and may differentially experience loneliness and coping (Heller & Arnold, [<reflink idref="bib16" id="ref15">16</reflink>]; Prino, Scigalab, Fabris, & Longobardi, [<reflink idref="bib33" id="ref16">33</reflink>]). The current study aims to gain a better understanding of the differences between sisters' and brothers' involvement and its relation to their perceptions of readiness to assume legal primary caregiving, loneliness, and self-efficacy.</p> <hd id="AN0175443517-3">Sisters' and Brothers' Involvement with a Sibling with IDD</hd> <p>Generally, both sisters and brothers of individuals with IDD experience feelings of duty to care for their sibling. They are often involved in their siblings' care across developmental stages, both due to their siblings' vulnerabilities and to help relieve their parents' stress (Tozer, Atkin, & Wenham, [<reflink idref="bib45" id="ref17">45</reflink>]). Sometimes, siblings' involvement includes assuming parental roles and responsibilities in childhood and emerging adulthood, a process known as 'parentification'. Their involvement may include instrumental parent-focused support, such as taking care of household chores and caring for and providing emotional support for a parent, or sibling-focused support such as care and support of a sibling (Tomeny, Barry, & Fair, [<reflink idref="bib43" id="ref18">43</reflink>]; Tomeny et al., [<reflink idref="bib44" id="ref19">44</reflink>]). In terms of sibling-focused care, sisters and brothers describe their increased involvement as taking the roles of caregiver, advocate, legal representative, and informal service coordinator (Hall & Rossetti, [<reflink idref="bib14" id="ref20">14</reflink>]; Rossetti & Hall, [<reflink idref="bib36" id="ref21">36</reflink>]). They are also frequently involved in their sibling's social life (Tomeny et al., [<reflink idref="bib44" id="ref22">44</reflink>]). A recent study on siblings' parentification in emerging adulthood found that both parent- and sibling-focused parentification correlated with lower well-being and depressive symptoms (Murrin, Beffel, & Nuttall, [<reflink idref="bib28" id="ref23">28</reflink>]), highlighting the difficulties that may be associated with greater involvement.</p> <p>There is little research on differences between adult sisters' and brothers' involvement and how other variables may relate to their involvement. However, a few studies seem to indicate differences based on sex. For example, Heller and Arnold ([<reflink idref="bib16" id="ref24">16</reflink>]) found that adult sisters are more likely than brothers to be involved with their siblings with IDD. It is important for siblings to expand their areas of involvement as part of their preparation for primary caregiving, such as by interacting with professionals who work with the family before their parents will not be able to provide primary care for their sibling with IDD (Burke, Lee, Arnold, & Owen, [<reflink idref="bib8" id="ref25">8</reflink>]).</p> <hd id="AN0175443517-4">Sisters' and Brothers' Readiness for Primary Caregiving</hd> <p>During the emerging adulthood stage in typically-developing families, children begin to distance themselves physically and emotionally from their siblings and decrease their involvement with each other (Arnett, [<reflink idref="bib3" id="ref26">3</reflink>]). In contrast, siblings of individuals with IDD commonly don't distance themselves; moreover, they can enable their siblings with IDD to have more independent lives (Burke et al., [<reflink idref="bib8" id="ref27">8</reflink>]), be engaged in their future planning activities, and eventually, take on their parents' role as primary caregivers (Heller & Arnold, [<reflink idref="bib16" id="ref28">16</reflink>]; Lee et al., [<reflink idref="bib23" id="ref29">23</reflink>]; Nuttall et al., [<reflink idref="bib29" id="ref30">29</reflink>]).</p> <p>Becoming the primary caregiver often involves serving as a legal guardian, if the individual with disabilities is unable to adequately address their own needs upon reaching the age of majority (Millar, [<reflink idref="bib26" id="ref31">26</reflink>], [<reflink idref="bib27" id="ref32">27</reflink>]). The legal guardian's role is to manage all aspects of the individual with disabilities' life, including living arrangements, financial decisions, education, and long-term care (Millar, [<reflink idref="bib26" id="ref33">26</reflink>]). At the same time, as guardianship stands in sharp contrast to self-determination, a less intrusive alternative to guardianship – 'supported decision-making' – has been considered (Millar, [<reflink idref="bib26" id="ref34">26</reflink>]; Rimon-Greenspan, Yabo, Namer Furstenberg, & Rivkin, [<reflink idref="bib34" id="ref35">34</reflink>]). This alternative guardianship model aims to support and encourage the individual with disabilities' quality of life and autonomy in areas such as education, policy, and self-determination (Millar, [<reflink idref="bib27" id="ref36">27</reflink>]). Specifically, a person is appointed to support the individual with disabilities' decision-making rather than making the decisions for them (Israel Ministry of Justice, [<reflink idref="bib19" id="ref37">19</reflink>]). Following Article 12 to the United Nations' Convention on the Rights of Persons with Disabilities (United Nations [Department of Economic and Social Affairs], [<reflink idref="bib47" id="ref38">47</reflink>]), in 2016, Israel added a correction to the Guardianship and Legal Capacity Law, which established supported decision-making as a new and preferred mechanism for primary caregiving (Israel Ministry of Justice, [<reflink idref="bib18" id="ref39">18</reflink>]).</p> <p>The readiness of a sibling for primary caregiving may be impacted by sex, in that sisters are more likely than brothers to anticipate an expanded future role in caregiving (Burke, Taylor, Urbano, & Hodapp, [<reflink idref="bib7" id="ref40">7</reflink>]; Heller & Arnold, [<reflink idref="bib16" id="ref41">16</reflink>]). The present study examines sisters' and brothers' perceptions of their readiness for the role of primary caregivers, including their readiness for guardianship and the sibling with IDD's ability to make decisions independently. The belief in individuals' independent decision-making underlies the current shift towards supported decision-making (Millar, [<reflink idref="bib27" id="ref42">27</reflink>]). Werner and Chabany ([<reflink idref="bib49" id="ref43">49</reflink>]) found that parents agreed that it is important to encourage their children with IDD's independence; nonetheless, they do so infrequently and still feel that they need to serve as legal guardians rather than taking a supported decision-making role.</p> <p>Typically-developing sisters and brothers reported having limited information on guardianship and its alternatives, and not seeing the relevant benefits of supported decision-making over legal guardianship (Brady, Burke, Landon, & Oertle, [<reflink idref="bib6" id="ref44">6</reflink>]). Further, studies indicate that readiness for primary caregiving requires siblings' preparation, including receiving disability-related information, obtaining support for their caregiving role, and enhancing the formal support system to address the needs of siblings with IDD (Arnold, Heller, & Kramer, [<reflink idref="bib4" id="ref45">4</reflink>]; Lee et al., [<reflink idref="bib23" id="ref46">23</reflink>], [<reflink idref="bib22" id="ref47">22</reflink>]; Rossetti & Hall, [<reflink idref="bib36" id="ref48">36</reflink>]). Still, during the transition to primary caregiving, parents and siblings face barriers and challenges in adjustment, such as lack of communication, disagreements, and lack of formal discussions about future planning. Siblings report not being ready, or are otherwise uncomfortable, with the transition due to its timing and the toll it takes on their own lives in terms of their availability and stress levels (Rossetti & Hall, [<reflink idref="bib36" id="ref49">36</reflink>]). Thus, sisters' and brothers' involvement in caregiving for siblings with disabilities in adulthood includes demands and tolls that are related to their stress and influences their well-being on various levels.</p> <hd id="AN0175443517-5">Sisters' and Brothers' Loneliness & Self-Efficacy</hd> <p>Some research shows that children and adolescent siblings of a child with IDD demonstrate more adjustment and emotional peer problems, and lower levels of prosocial behaviour (e.g. Shivers & Dykens, [<reflink idref="bib39" id="ref50">39</reflink>]), along with problems with internalising behaviour, social functioning, and sibling relationships than siblings of a child with normative development (Shivers, Jackson, & McGregor, [<reflink idref="bib40" id="ref51">40</reflink>]). Research that focused on sex differences in siblings of individuals with ASD in emerging adulthood reported that sisters demonstrated higher negative affect than brothers (Hamama & Gaber, [<reflink idref="bib15" id="ref52">15</reflink>]). Additionally, the siblings' social life may be negatively impacted and contribute to feelings of neglect or loneliness (Koukouriki et al., [<reflink idref="bib21" id="ref53">21</reflink>]). Loneliness has been described as a negative subjective emotional experience that affects children's quality of life and may impair adults' well-being. It relates to the individual's sense that they have unmet social needs, which differs from the objective aspect of being alone (Margalit, [<reflink idref="bib25" id="ref54">25</reflink>]; Peplau & Perlman, [<reflink idref="bib32" id="ref55">32</reflink>]). Studies in groups of younger siblings (children and adolescents) of children with IDD, did not find differences between brothers' and sisters' levels of loneliness (Kaminsky & Dewey, [<reflink idref="bib20" id="ref56">20</reflink>]; Tsamparli, Tsibidaki, & Roussos, [<reflink idref="bib46" id="ref57">46</reflink>]). Beyond sibling-specific research, studies on differences in male and female adult loneliness demonstrate inconsistent results. For example, Rosenstreich, Feldman, Davidson, Maza, and Margalit ([<reflink idref="bib35" id="ref58">35</reflink>]) did not find differences in loneliness in Israeli college students based on sex. In contrast, in a study of a large sample of university students in Taiwan, males exhibited more social loneliness than females (Ong, Chang, & Wang, [<reflink idref="bib31" id="ref59">31</reflink>]). To date, studies have not examined differences in loneliness between adult sisters and brothers of a sibling with IDD.</p> <p>Coping with loneliness and other life stressors is related to complex and multidimensional processes involving environmental conditions, personality dispositions, and the individual's available resources, such as self-efficacy (Margalit, [<reflink idref="bib25" id="ref60">25</reflink>]). Self-efficacy (SE) refers to individuals' beliefs concerning their ability to meet desired outcomes in life; in other words, to affect events that influence their lives or to achieve goals (Bandura, [<reflink idref="bib5" id="ref61">5</reflink>]). Studies have found that SE can help people cope with life stressors (e.g. Weiss et al., [<reflink idref="bib48" id="ref62">48</reflink>]). In a study on adolescent siblings with and without disabilities, sisters reported higher SE than brothers (O'Kane Grissom & Borkowski, [<reflink idref="bib30" id="ref63">30</reflink>]). Although not conducted on adult siblings, a study on SE for coping with stress in adulthood found that men had higher SE than women (Amnie, [<reflink idref="bib2" id="ref64">2</reflink>]). Extensive examination of existing research did not reveal studies on adult sisters' and brothers' loneliness and SE and the nature of their relationship with typically-developing siblings' involvement.</p> <hd id="AN0175443517-6">Current Study</hd> <p>While adult sisters and brothers are often involved in the care of their sibling with IDD, research has minimally explored sex differences in their level of involvement and associated aspects. Thus, the goal of the current study was to compare between adult sisters' and brothers' involvement in their care of their siblings with IDD. Beyond this, the study examined differences in sisters' and brothers' readiness for primary caregiving (readiness for guardianship and belief in their sibling's independent decision-making), loneliness, and self-efficacy, and how these variables predict their involvement.</p> <p>The following research hypotheses guided the study:</p> <p></p> <ulist> <item> Further to the research literature, we hypothesised that compared to brothers, sisters would be more involved in the care of their siblings with IDD, show greater readiness for the role of primary caregiving (readiness for legal guardianship and beliefs in their sibling's ability to make independent decisions).</item> <p></p> <item> Based on the inconsistent results and the lack of adult sibling studies that examined sex differences on loneliness and SE, we explored differences between sisters and brothers without a specific hypothesis.</item> <p></p> <item> We hypothesised that readiness to be the primary caregiver (readiness for legal guardianship and belief in their siblings' ability to make independent decisions), loneliness, and SE would predict variability between sisters' and brothers' level of involvement.</item> </ulist> <hd id="AN0175443517-7">Method</hd> <p></p> <hd id="AN0175443517-8">Participants</hd> <p>The study sample consisted of 175 Israeli adult sisters and brothers of a sibling with IDD. Participants were all 18 years and older, and according to Israeli law, can serve as legal guardians or its alternatives, but were not yet serving in that role. Of these, 118 were sisters who were 18–62 years of age (<emph>M</emph>= 28.89, <emph>SD </emph>= 8.46), and their siblings with IDD were 5–60 years of age (<emph>M</emph> = 25.68, <emph>SD</emph> = 10.96). There were 57 brothers who were 19–55 years of age (<emph>M</emph> = 29.16, <emph>SD</emph> = 6.49) and their siblings with disability were 11–57 years of age (<emph>M</emph> = 26.07, <emph>SD</emph> = 8.45). Most participants were not married, had a college education, were average socio-economic status (SES) based on income data, and were older than their sibling with IDD. In terms of the siblings with disabilities, the types of disabilities were intellectual disability ([ID] 33.7% or n = 59), Autism Spectrum Disorder ([ASD] 24% or n = 42), and ASD combined with ID (42.3% or n = 74). They had mild to moderate ID and high-moderate functioning ASD (see Table 1). Most of the siblings with IDD (58.1%) live at home with their parents, while the others (41.9%) live in locations such as a community residence (36.9%) or separate institutions (4.5%).</p> <p>Table 1. Participant demographics (N = 175).</p> <p> <ephtml> <table><thead><tr><td>Characteristics</td><td>Sisters <italic>(n </italic>= 118)</td><td>Brothers <italic>(n </italic>= 57)</td></tr><tr><td /><td><italic>n</italic></td><td>(%)</td><td><italic>n</italic></td><td>(%)</td></tr></thead><tbody><tr><td>Marital status:</td><td /><td /><td /><td /></tr><tr><td>With spouse</td><td>41</td><td>(34.7)</td><td>14</td><td>(24.6)</td></tr><tr><td>Single</td><td>76</td><td>(64.4)</td><td>43</td><td>(75.4)</td></tr><tr><td>Education:</td><td /><td /><td /><td /></tr><tr><td>Secondary education (12 years of education)</td><td>33</td><td>(28.7)</td><td>15</td><td>(26.3)</td></tr><tr><td>College education (13–16 years of education)</td><td>76</td><td>(65.9)</td><td>38</td><td>(66.3)</td></tr><tr><td>Graduate or postgraduate (17–20 years of education)</td><td>6</td><td>(5.2)</td><td>4</td><td>(7.0)</td></tr><tr><td>Birth order:</td><td /><td /><td /><td /></tr><tr><td>Older than sibling with disability</td><td>83</td><td>(70.3)</td><td>40</td><td>(73.7)</td></tr><tr><td>Younger than sibling with disability</td><td>35</td><td>(29.7)</td><td>18</td><td>(26.3)</td></tr><tr><td>Type of IDD in sibling:</td><td /><td /><td /><td /></tr><tr><td>ID</td><td>41</td><td>(34.7)</td><td>18</td><td>(31.6)</td></tr><tr><td>ASD</td><td>24</td><td>(20.3)</td><td>18</td><td>(31.6)</td></tr><tr><td>Both ID and ASD</td><td>53</td><td>(44.9)</td><td>21</td><td>(36.8)</td></tr><tr><td>Severity/Function levels:</td><td /><td /><td /><td /></tr><tr><td>ID</td><td /><td /><td /><td /></tr><tr><td>Mild</td><td>18</td><td>(43.9)</td><td>8</td><td>(44.4)</td></tr><tr><td>Moderate</td><td>17</td><td>(41.5)</td><td>5</td><td>(27.8)</td></tr><tr><td>Severe</td><td>6</td><td>(14.7)</td><td>5</td><td>(27.8)</td></tr><tr><td>ASD</td><td /><td /><td /><td /></tr><tr><td>High-function</td><td>12</td><td>(52.2)</td><td>3</td><td>(16.7)</td></tr><tr><td>Moderate- function</td><td>7</td><td>(30.4)</td><td>9</td><td>(50)</td></tr><tr><td>Low-function</td><td>4</td><td>(17.4)</td><td>6</td><td>(33.3)</td></tr><tr><td>ID and ASD</td><td /><td /><td /><td /></tr><tr><td>ID</td><td /><td /><td /><td /></tr><tr><td>Mild</td><td>22</td><td>(41.5)</td><td>6</td><td>(28.6)</td></tr><tr><td>Moderate</td><td>21</td><td>(39.6)</td><td>7</td><td>(33.3)</td></tr><tr><td>Severe</td><td>10</td><td>(18.8)</td><td>8</td><td>(38.0)</td></tr><tr><td>ASD</td><td /><td /><td /><td /></tr><tr><td>High-functioning</td><td>22</td><td>(41.5)</td><td>11</td><td>(52.4)</td></tr><tr><td>Moderate-functioning</td><td>14</td><td>(26.4)</td><td>4</td><td>(19.0)</td></tr><tr><td>Low-functioning</td><td>17</td><td>(32.1)</td><td>6</td><td>(28.6)</td></tr></tbody></table> </ephtml> </p> <p>1 IDD = Intellectual and developmental disabilities, ID = Intellectual disability, ASD = Autism Spectrum Disorder.</p> <hd id="AN0175443517-9">Measures</hd> <p></p> <hd id="AN0175443517-10">Demographics</hd> <p>A demographics questionnaire was administered to all participants. Twenty-four items included questions relating to age, education, and SES, siblings' type of disability (ASD or ID), severity/functionality of disability (ID: mild, moderate, severe; ASD: high, moderate, low function), sibling birth order, the age of the sibling with disabilities, and the place of residence of the sibling with disability.</p> <hd id="AN0175443517-11">Siblings' Involvement</hd> <p>Adapted from the Parents' Involvement Scale (Ingber, [<reflink idref="bib17" id="ref65">17</reflink>]), the researchers created the Siblings' Involvement Scale for the current study. This 23-item scale examines sisters' and brothers' involvement in the care of their sibling with a disability. Participants respond to the items on a 5-point Likert-type scale ranging from 1 = strongly disagree to 5 = strongly agree. The full scale obtained a high internal consistency of Cronbach's α =.93 in this study.</p> <p>Five subscales measures specific aspects of siblings' involvement, and all reliability statistics are reported for the current study sample: (a) Communication Pattern, with four items (e.g. 'I maintain regular contact with my brother's/sister's health care team: personally, by telephone, in writing') that obtained Cronbach's α =.89; (b) Interest and Attendance, with five items (e.g. 'I'm looking for information and updates regarding my brother's/sister's functioning') that obtained Cronbach's α =.82; (c) Social Involvement, with four items (e.g. 'I am in contact with other siblings to obtain information and support') that obtained Cronbach's α =.69; (d) Collaboration, with seven items (e.g. 'I actively take part in my brother's/sister's treatment') that obtained Cronbach's α =.87; and (e) Initiative and Responsibility, with three items (e.g. 'I am involved in making decisions about my brother's/sister's treatment plan') that obtained a Cronbach's α =.75.</p> <hd id="AN0175443517-12">Readiness for Primary Caregiving Scale</hd> <p>This researcher-developed questionnaire was designed for the purposes of this study, and included questions relating to siblings' readiness to assume future primary caregiving (guardianship or alternatives). Items were rated on a 5-point Likert-type scale, ranging from 1 = not at all to 5 = very much. Following content validation, which was conducted by expert evaluation of the questions, and in accordance with the issues raised in the literature in the field, six questions referring to siblings were created using two subscales. Three questions examined the sibling's readiness to act as a guardian (e.g. 'To what extent do you feel that you are suitable to serve as the guardian of your brother/sister?'; 'How anxious are you about becoming your brother's/sister's guardian?'). Reliability for these items was Cronbach's α =.73. Three questions related to the belief that the respondent's sibling has the ability to be involved in making decisions about their own life (e.g. 'To what extent do you believe in the ability of your brother/sister to make his/her own decisions?'), as this stands at the basis for a supported decision-making role. Reliability for these items was Cronbach's α =.86.</p> <hd id="AN0175443517-13">Loneliness Scale</hd> <p>This nine-item scale (De Jong Gierveld & Van Tilburg, [<reflink idref="bib12" id="ref66">12</reflink>]) evaluates feelings of loneliness. Three items reflect emotional loneliness (e.g. 'I sometimes feel rejected') and six items reflect social loneliness (e.g. 'I miss having enough people around me'). Respondents score items on a 3-point Likert-type scale indicating how applicable each item is to them, ranging from 1 = mostly suitable to 3 = mostly not suitable. A higher score reflects a higher level of loneliness. Reliability for the scale in this study was Cronbach's α =.85.</p> <hd id="AN0175443517-14">The New General Self-Efficacy Scale (NGSE)</hd> <p>The NGSE is an eight-item self-report measure of general self-efficacy (Chen, Gully, & Eden, [<reflink idref="bib10" id="ref67">10</reflink>]). The scale consists of items such as, 'I will be able to achieve most of the goals that I have set for myself' and 'Even when things are tough, I can perform quite well'. Items are rated on a 4-point Likert-type scale ranging from 1 = strongly disagree to 4 = strongly agree. High internal consistency was obtained in this study with Cronbach's α =.89.</p> <hd id="AN0175443517-15">Procedure</hd> <p>Approval to conduct the current study was provided by the ethical review board of Kibbutzim College of Education, Technology, and the Arts. Siblings were recruited primarily through an online survey circulated via social media and sent to organisations that focus on individuals with disabilities. The first page of the survey contained the informed consent form, and beginning the survey constituted provision of consent. It was made clear to participants that participation in the study was voluntary and anonymous and that the study adhered to all ethical guidelines. Questionnaires were administered in the order they are presented above.</p> <hd id="AN0175443517-16">Results</hd> <p></p> <hd id="AN0175443517-17">Correlations between Study Variables and Involvement</hd> <p>Pearson correlations were performed separately for sisters and brothers examining the relation between level of involvement and demographic variables (Table 2) and between all study variables (Table 3). Significant negative correlations were found for sisters between involvement and IDD functioning and between involvement and birth order. In terms of study variables, significant positive correlations were found between sisters' beliefs in their sibling's ability to make decisions independently and their general involvement and collaboration. Sisters' readiness for guardianship was positively correlated to general involvement and to all involvement subtypes, and sisters' loneliness was negatively correlated with involvement. For brothers, a significant positive correlation was found only between involvement (and all involvement subtypes except collaboration) and readiness for guardianship.</p> <p>Table 2. Pearson correlations among Sisters' and Brothers' involvement & demographic & study variables.</p> <p> <ephtml> <table><thead><tr><td /><td /><td>Age</td><td>Disability</td><td>ASD Functioning</td><td>ID Severity</td><td>Birth Order</td><td>Education</td><td>Sibling Decision-making</td><td>Readiness for guardianship</td><td>Self-Efficacy</td><td>Loneliness</td></tr></thead><tbody><tr><td>Involvement</td><td>Sisters(<italic>n</italic>= 118)</td><td>.08</td><td>−.07</td><td>.02</td><td>−.25**</td><td>−.25**</td><td>.03</td><td>.23*</td><td>.31**</td><td>.12</td><td>−.12</td></tr><tr><td>Brothers (<italic>n</italic>= 57)</td><td>−.07</td><td>−.08</td><td>.29</td><td>−.02</td><td>.28</td><td>−.07</td><td>.22</td><td>.42**</td><td>.12</td><td>−.07</td></tr></tbody></table> </ephtml> </p> <p>2 <emph>*p </emph><.05 <emph>**p </emph><.01</p> <p>Table 3. Pearson correlations between involvement and its subtypes and all variables for Sisters and Brothers.</p> <p> <ephtml> <table><thead><tr><td /><td>1</td><td>2</td><td>3</td><td>4</td><td>5</td><td>6</td><td>7</td><td>8</td><td>9</td><td>10</td></tr></thead><tbody><tr><td><italic>1.Involvement</italic></td><td>-</td><td>.87**</td><td>.76**</td><td>.68**</td><td>.93**</td><td>.78**</td><td>.22</td><td>.32**</td><td>.18</td><td>−.16</td></tr><tr><td><italic>2. Communication</italic></td><td>.85**</td><td>-</td><td>.50**</td><td>.45**</td><td>.93**</td><td>.79**</td><td>.23</td><td>.25**</td><td>.01</td><td>.04</td></tr><tr><td><italic>3. Interest and attendance</italic></td><td>.79**</td><td>.52**</td><td>-</td><td>.56**</td><td>.60**</td><td>.50**</td><td>.23</td><td>.30**</td><td>.23</td><td>−.15</td></tr><tr><td><italic>4. Social involvement</italic></td><td>.65**</td><td>.41**</td><td>.45**</td><td>-</td><td>.49**</td><td>.51**</td><td>−.01</td><td>.25*</td><td>.12</td><td>−.08</td></tr><tr><td><italic>5. Collaboration</italic></td><td>.94**</td><td>.81**</td><td>.66**</td><td>.51**</td><td>-</td><td>.69**</td><td>.18</td><td>.24</td><td>.03</td><td>−.01</td></tr><tr><td><italic>6. Initiative and responsibility</italic></td><td>.82**</td><td>.68**</td><td>.62**</td><td>.36**</td><td>.73**</td><td>-</td><td>.25</td><td>.33**</td><td>.16</td><td>−.43</td></tr><tr><td><italic>7.Beliefs in decision making</italic></td><td>.23*</td><td>.17</td><td>.12</td><td>.18</td><td>.27**</td><td>.16</td><td>-</td><td>.15</td><td>.12</td><td>−.13</td></tr><tr><td><italic>8.Ready guardian</italic></td><td>.35**</td><td>.24**</td><td>.37**</td><td>.24**</td><td>.25**</td><td>.42**</td><td>.20*</td><td>-</td><td>.23</td><td>−.16</td></tr><tr><td><italic>9. SE</italic></td><td>.12</td><td>.05</td><td>.24**</td><td>.06</td><td>.05</td><td>.13</td><td>.11</td><td>.35**</td><td>-</td><td>−.55**</td></tr><tr><td><italic>10. Loneliness</italic></td><td>−.19*</td><td>−.06</td><td>−.26**</td><td>−.15</td><td>−.02</td><td>−.06</td><td>.01</td><td>−.26**</td><td>−.33**</td><td>-</td></tr></tbody></table> </ephtml> </p> <ulist> <item>3 The results for the sisters' sample (<emph>n</emph> = 118) are shown below the diagonal. The results for the brothers' sample (n = 57) are shown above the diagonal.</item> <item>4 <emph>*p </emph><.05 <emph>**p </emph><.01.</item> </ulist> <hd id="AN0175443517-18">Group Differences</hd> <p>To decrease the chance of Type 1 errors, a one-way MANOVA was conducted with sex (Sisters/Brothers) as the independent variable, and with the following dependent variables: five involvement subscales (Communication Pattern, Interest and Attendance, Social Involvement, Collaboration and Initiative, and Responsibility), belief in siblings' decision-making, readiness for guardianship, loneliness, and self-efficacy. The individual subscales were included in order to specifically examine the different types of involvement. Partial η<sups>2</sups> was calculated as an estimate of effect size (Cohen, [<reflink idref="bib11" id="ref68">11</reflink>]). Results revealed a significant main effect for sex, <emph>F</emph>(<reflink idref="bib1" id="ref69">1</reflink>, 171) = 2.98, <emph>p</emph> <.01, partial η<sups>2</sups> =.16). Sisters reported more social involvement, greater belief in their sibling with IDD's independent decision-making, lower loneliness, and higher SE than brothers (see Table 3).</p> <hd id="AN0175443517-19">Prediction of Involvement</hd> <p>To examine the variables predicting siblings' involvement, hierarchical multiple regression analyses were conducted separately for sisters and brothers, with self-reported involvement as the dependent variable (see Table 5).</p> <p>Table 4. Comparison Between Sisters' & Brothers' involvement, self-efficacy, & loneliness.</p> <p> <ephtml> <table><thead><tr><td /><td>Sisters</td><td>Brothers</td><td /><td /></tr><tr><td>Variable</td><td><italic>M</italic></td><td><italic>SD</italic></td><td><italic>M</italic></td><td><italic>SD</italic></td><td><italic>F</italic>(1,107)</td><td>Partial <italic>η</italic><sup>2</sup></td></tr></thead><tbody><tr><td>Involvement Subscales</td><td /><td /><td /><td /><td /><td /></tr><tr><td>Communication</td><td>2.05</td><td>1.13</td><td>2.18</td><td>1.05</td><td>1.12</td><td>.01</td></tr><tr><td>Interest & attendance</td><td>3.63</td><td>0.93</td><td>3.51</td><td>0.78</td><td>0.31</td><td>.00</td></tr><tr><td>Social involvement</td><td>2.35</td><td>0.96</td><td>1.91</td><td>0.72</td><td>9.23**</td><td>.05</td></tr><tr><td>Collaboration</td><td>2.33</td><td>1.02</td><td>2.23</td><td>0.87</td><td>0.13</td><td>.00</td></tr><tr><td>Initiative & responsibility</td><td>2.50</td><td>1.09</td><td>2.33</td><td>0.11</td><td>0.39</td><td>.00</td></tr><tr><td>Belief in siblings' decision-making</td><td>3.05</td><td>1.20</td><td>2.65</td><td>1.09</td><td>4.27*</td><td>.03</td></tr><tr><td>Readiness for guardianship</td><td>3.31</td><td>0.67</td><td>3.37</td><td>0.59</td><td>0.27</td><td>.00</td></tr><tr><td>Self-efficacy</td><td>3.32</td><td>0.46</td><td>3.15</td><td>0.57</td><td>3.98*</td><td>.02</td></tr><tr><td>Loneliness</td><td>1.52</td><td>0.45</td><td>1.68</td><td>0.53</td><td>3.97*</td><td>.02</td></tr></tbody></table> </ephtml> </p> <ulist> <item>5 N = 175; sisters: <emph>n</emph> = 118 and brothers: <emph>n</emph> = 57.</item> <item>6 * <emph>p</emph><.05. **<emph>p</emph> <.01.</item> </ulist> <p>Table 5. Hierarchical multiple regressions predicting Sisters' and Brothers' involvement.</p> <p> <ephtml> <table><thead><tr><td>Variable</td><td>Sisters (<italic>n</italic> = 118)</td><td>Brothers (<italic>n</italic> = 57)</td></tr><tr><td /><td>B (SE)</td><td>β</td><td><italic>R<sup>2</sup></italic></td><td><italic>ΔR<sup>2</sup></italic></td><td>B (SE)</td><td>β</td><td><italic>R<sup>2</sup></italic></td><td><italic>ΔR<sup>2</sup></italic></td></tr></thead><tbody><tr><td>Step 1</td><td /><td /><td>.17</td><td>.17*</td><td /><td /><td>.23</td><td>.23</td></tr><tr><td>ID severity</td><td>−0.22 (0.18)</td><td>.11</td><td /><td /><td>−0.19 (−.25)</td><td>−.19</td><td /><td /></tr><tr><td>ASD functioning</td><td>0.11 (0.15)</td><td>−.19</td><td /><td /><td>0.29 (0.24)</td><td>.29</td><td /><td /></tr><tr><td>Birth order</td><td>−0.65 (0.25)</td><td>−.34*</td><td /><td /><td>0.89 (0.46)</td><td>.40</td><td /><td /></tr><tr><td>Step 2</td><td /><td /><td>.32</td><td>.15*</td><td /><td /><td>.58</td><td>.35</td></tr><tr><td>ID severity</td><td>0.03 (0.22)</td><td>.03</td><td /><td /><td>0.06 (0.29)</td><td>.06</td><td /><td /></tr><tr><td>ASD functioning</td><td>0.07 (0.15)</td><td>.07</td><td /><td /><td>0.41 (0.28)</td><td>.41</td><td /><td /></tr><tr><td>Birth order</td><td>−0.53 (0.26)</td><td>−.27*</td><td /><td /><td>0.98 (0.41)</td><td>.44*</td><td /><td /></tr><tr><td>Belief in siblings' decision-making</td><td>0.18 (0.13)</td><td>.27</td><td /><td /><td>0.15 (0.15)</td><td>.24</td><td /><td /></tr><tr><td>Readiness for guardianship</td><td>0.25 (0.20)</td><td>.20</td><td /><td /><td>−0.29 (0.36)</td><td>.59*</td><td /><td /></tr><tr><td>SE</td><td>−0.28 (0.28)</td><td>−.15</td><td /><td /><td>−0.30 (0.39)</td><td>−.17</td><td /><td /></tr><tr><td>Loneliness</td><td>−0.12 (0.32)</td><td>−.06</td><td /><td /><td>−0.86 (0.49)</td><td>−.57</td><td /><td /></tr></tbody></table> </ephtml> </p> <ulist> <item>7 N = 175.</item> <item>8 * <emph>p</emph><.05.</item> </ulist> <hd id="AN0175443517-20">Sisters</hd> <p>To control for type and functionality of disability and for birth order, these variables were entered in the first step, and showed a significant contribution, <emph>F</emph>(<reflink idref="bib3" id="ref70">3</reflink>, 51) = 3.43, <emph>p</emph> =.02, explaining 17% of the variance (see Table 4). Readiness for guardianship, level of belief in their sibling's ability to make independent decisions, loneliness, and SE were entered in the second step, <emph>F</emph>(<reflink idref="bib8" id="ref71">8</reflink>, 46) = 2.74, <emph>p</emph> =.02, explaining 15% of the variance, and reaching a total explanation of 32%. Birth order had a unique explanation of sisters' involvement and predicted higher levels of involvement. The other variables did not significantly predict sisters' involvement.</p> <hd id="AN0175443517-21">Brothers</hd> <p>In contrast to sisters, the type and functionality of disability as well as birth order that were entered in the first step showed an insignificant contribution, <emph>F</emph>(<reflink idref="bib3" id="ref72">3</reflink>, 18) = 1.81, <emph>p</emph> = 0.18, and explained 23% of the variance in brothers' involvement (see Table 4). Readiness for guardianship, level of belief in their sibling's ability to make decisions, loneliness, and SE were entered in the second step, <emph>F</emph>(<reflink idref="bib8" id="ref73">8</reflink>, 13) = 2.20, <emph>p</emph> =.10, explaining 35% of the variance, and reaching a total explanation of 58%. For brothers, birth order and readiness for guardianship had a unique explanation of their involvement.</p> <hd id="AN0175443517-22">Discussion</hd> <p>This study compared sisters' and brothers' involvement in the care of their siblings with IDD, their readiness to be future legal primary caregivers – including their readiness for guardianship, and beliefs in their sibling's ability to make independent decisions as part of their readiness for the role of supported decision- making. Additionally, we compared sisters' and brothers' loneliness and self-efficacy (SE), and how these variables predict their levels of involvement.</p> <hd id="AN0175443517-23">Differences in Sisters' & Brothers' Involvement and Readiness for Primary Caregiving</hd> <p>The hypothesis that sisters would be more involved than brothers was partially supported with findings showing that sisters were more socially involved than brothers, having greater involvement in contacting other siblings and families to obtain information in order to give and receive support. Previous research found that social support was important in reducing stressors that come with future planning and the duty of caregiving to their sibling with IDD (Lee et al., [<reflink idref="bib22" id="ref74">22</reflink>]), and was related to more positive sibling relationship attitudes (Tomeny et al., [<reflink idref="bib43" id="ref75">43</reflink>]). Importantly, the current study's findings seem to indicate that siblings, and specifically sisters, need social support as a part of involvement in caregiving for their sibling with IDD. These results are in line with previous studies that emphasised sex differences in the way sisters and brothers obtain support, with adolescent sisters receiving greater support than brothers from their relationship networks with friends and from relationships with their siblings with ASD (Smith, Elder, Satorch, & Rowe, [<reflink idref="bib41" id="ref76">41</reflink>]). These findings are also in line with a previous study that found sex differences between mothers and fathers, where mothers who had more support from informal kinship, like friends or other parents of children with ASD, were more involved in caring for their child (Sharabi & Marom-Golan, [<reflink idref="bib38" id="ref77">38</reflink>]). In light of research showing a lack of family support for siblings during the transition to primary caregiving (Lee et al., [<reflink idref="bib22" id="ref78">22</reflink>]), it is especially important to further examine the issue of sex in the context of sisters' and brothers' social support needs and how it relates to involvement, particularly, the unique needs of brothers for this support.</p> <p>In contrast with our hypothesis, results revealed that sisters did not differ from brothers in other aspects of involvement such as interest and attendance, collaboration, initiative and responsibility, and communicating with their siblings' professionals and caregivers. The importance of siblings' engagement and involvement with adults caring for their sibling with IDD also emerged in previous research from the professionals' perspective, who reported that it was challenging working with siblings. These professionals noted the lack of siblings' involvement, and the difficulty accessing siblings unless there is a crisis (Burke et al., [<reflink idref="bib8" id="ref79">8</reflink>]). In light of the differences found in the current study in sisters' and brothers' social involvement, interventions to increase siblings' involvement and strengthen their relationships with professionals should match the type of support to the unique differences between sisters and brothers.</p> <p>Whereas previous studies demonstrated that sisters were more likely than brothers to anticipate a future caregiving role (Burke et al., [<reflink idref="bib7" id="ref80">7</reflink>]; Heller & Arnold, [<reflink idref="bib16" id="ref81">16</reflink>]), in contrast to our hypothesis, the results did not reveal significant differences between sisters and brothers in their readiness to serve as guardians. However, supporting our hypothesis, sisters did report a significantly higher level of belief in their sibling's ability to make decisions independently. This belief stands at the basis of supported decision-making (Millar, [<reflink idref="bib27" id="ref82">27</reflink>]; Werner & Chabany, [<reflink idref="bib49" id="ref83">49</reflink>]). In light of the legal guidelines for supported decision-making as the more optimal and preferred caregiving option, it is important to be aware of potential sex differences and examine this issue in greater depth.</p> <hd id="AN0175443517-24">Differences in Sisters' & Brothers' Loneliness & Self-Efficacy</hd> <p>Sisters in the current study reported lower levels of loneliness than brothers. These findings are consistent with Ong et al. ([<reflink idref="bib31" id="ref84">31</reflink>]) who found that adult males reported more social loneliness than females, but stand in contrast to studies that focused on younger siblings of children with disabilities (Kaminsky & Dewey, [<reflink idref="bib20" id="ref85">20</reflink>]; Tsamparli et al., [<reflink idref="bib46" id="ref86">46</reflink>]). The results thus provide an important contribution to the existing literature by examining the loneliness of adult siblings.</p> <p>Results also showed that sisters reported higher personal SE than brothers. This is similar to the findings of O'Kane Grissom and Borkowski ([<reflink idref="bib30" id="ref87">30</reflink>]) on adolescent siblings. Given that SE has been shown to help people cope with life stressors (e.g. Luque Salas, Rodríguez, Urbieta, & Cuadrado, [<reflink idref="bib24" id="ref88">24</reflink>]; Weiss et al., [<reflink idref="bib48" id="ref89">48</reflink>]), this finding highlights the importance of studying the unique differences between sisters' and brothers' coping with stressors during the transition to a primary caregiving role. We further found that both sisters' and brothers' high SE was related to lower feelings of loneliness. This finding is consistent with adult research (Al Khatib, [<reflink idref="bib1" id="ref90">1</reflink>]). Promoting sisters' and brothers' SE is essential, given the complexity of sisters' and brothers' roles and their involvement – they serve as friends, caregivers, etc., along with their challenges in coping and stress at the transition time to primary caregiving. This includes disagreements with their parents about future planning, a lack of family support, and emotional difficulties (e.g. Lee et al., [<reflink idref="bib22" id="ref91">22</reflink>]; Rossetti & Hall, [<reflink idref="bib36" id="ref92">36</reflink>]). Professionals who work with the family should take this into consideration when guiding families with children with IDD.</p> <hd id="AN0175443517-25">Predicting Sisters' and Brothers' Involvement</hd> <p>Although both sisters' and brothers' involvement was positively correlated to their perception of readiness to serve as legal guardians for their sibling with IDD, only brothers' perceptions of readiness predicted their current involvement, with greater readiness to serve as a guardian predicting greater involvement. This finding is interesting in light of previous research showing that sisters were more involved in their siblings' with disabilities life and have greater expectations of being involved in their sibling's future care (Burke et al., [<reflink idref="bib7" id="ref93">7</reflink>]; Heller & Arnold, [<reflink idref="bib16" id="ref94">16</reflink>]). Similarly, only sisters' beliefs in their sibling's independent decision-making correlated with their higher levels of involvement, yet in the regression, this belief amongst both sisters and brothers did not predict their current involvement. The complexity of legal primary caregiving requires early and comprehensive preparation that includes knowledge and support to address typically-developing siblings' needs (Lee et al., [<reflink idref="bib22" id="ref95">22</reflink>]; Rossetti & Hall, [<reflink idref="bib36" id="ref96">36</reflink>]). The results from our study emphasise the assumption that active involvement of siblings is an important part of preparing for this role (Lee et al., [<reflink idref="bib22" id="ref97">22</reflink>]). These results need to be further investigated referring to sisters' and brothers' current and future involvement as legal caregivers, which may be understood in light of social changes related to the rights of people with IDD.</p> <p>The research in this area is in its infancy. As Brady et al. ([<reflink idref="bib6" id="ref98">6</reflink>]) noted, siblings in their study had limited knowledge of guardianship and alternatives, and they preferred full guardianship over supported decision-making for their own siblings. Our study emphasises the need to examine sisters' and brothers' beliefs in their sibling with a disability's ability to make independent decisions, as it serves as the basis for the role of supported decision-making (Millar, [<reflink idref="bib27" id="ref99">27</reflink>]).</p> <p>Surprisingly, although only sisters' loneliness was negatively correlated to their general involvement and to their interest and attendance, in the regression analysis, neither loneliness nor SE predicted variability of sisters' or brothers' involvement with their siblings with IDD. We expected that loneliness would explain the variability of sisters' and brothers' involvement, as involvement includes great physical, emotional, and social responsibilities and demands (Hall & Rossetti, [<reflink idref="bib14" id="ref100">14</reflink>]; Tomeny et al., [<reflink idref="bib44" id="ref101">44</reflink>]), which might come at the expense of their social life in childhood and adulthood (at the transition to primary caregiving). The study's results may relate to the closeness of the sisters and brothers with their siblings during the transition period to primary caregiving (Burke et al., [<reflink idref="bib8" id="ref102">8</reflink>]), which may fulfill their needs, and thus loneliness did not predict their involvement. Further, previous research revealed that SE has been found to relate to effectively coping with challenges that might come with their involvement with their siblings with IDD (O'Kane Grissom & Borkowski, [<reflink idref="bib30" id="ref103">30</reflink>]). It is unclear why SE did not predict siblings' involvement as hypothesised. Sibling relationships and involvement should be further explored in terms of friendship and loneliness, as well as SE.</p> <p>Beyond the stated research hypotheses, our analyses also revealed that birth order predicted the level of involvement for both brothers and sisters. In line with previous research (Smith et al., [<reflink idref="bib41" id="ref104">41</reflink>]), being an older sister to the sibling with IDD was related to greater involvement than being a younger sister. Interestingly, we found that being a younger brother than the sibling with IDD predicted greater involvement than being an older brother. Research has shown that birth order may impact the relationship between siblings with and without IDD, and is dynamic across the lifespan (Floyd, Costigan, & Richardson, [<reflink idref="bib13" id="ref105">13</reflink>]; Tomeny et al., [<reflink idref="bib43" id="ref106">43</reflink>]). Based on these findings, it is necessary to further investigate the relations between birth order, sex, and other varied aspects of involvement in different stages of development, and how these impact the transition to the role of primary caregiving for a sibling with IDD.</p> <hd id="AN0175443517-26">Limitations</hd> <p>There are a number of limitations to the current study. The study focused on sisters' and brothers' self-perceptions, using self-report questionnaires that provide subjective information. Exploring the variables examined in this study through additional perspectives, such as parents and professionals, might shed light on the results and provide a deeper understanding of their meaning. Moreover, the study relied solely on quantitative methodology and the use of structured questionnaires as the best method to test the research hypotheses. It is recommended that researchers also incorporate the use of qualitative methodologies. This will allow an in-depth examination of the resources, perceptions, and vulnerability factors as expressed in the siblings' subjective experience and focusing on the beliefs of those involved in the legal caregiving process. Regarding the family system, there is a need for additional research studying the transition period, including the distinct and shared needs associated with family interactions during siblings' transition to primary caregiving (legal guardianship or supported decision-making), and at the same time, the transition of siblings with IDD from childhood to adulthood. Another limitation of the current study is the wide age range of participants in the study and the multiple disabilities. The study included those 18 years and older as this is the age for becoming a legal primary caregiver for a sibling with disabilities in Israel. Although age did not seem to relate to differences in the results, there is a need for further research to investigate sisters' and brothers' involvement and readiness for primary caregiving at various ages and varying severity/functionality of disabilities.</p> <hd id="AN0175443517-27">Conclusions and Practical Implications</hd> <p>The current study highlights the significant impact of siblings' involvement as part of their general preparation and readiness for the role of primary caregivers (i.e. guardians or supported decision-making). Given the differences that we found in terms of sisters' and brothers' involvement, their readiness for becoming legal guardians, their beliefs in their sibling with IDD's ability to make independent decisions as part of their readiness for primary caregiving – specifically a supported decision-making role, loneliness and self-efficacy, it is particularly relevant to take sex differences into account in future planning processes. The study's findings also reinforce the importance of sisters' and brothers' beliefs in their siblings' decision-making ability as part of their readiness for a future supported decision-making role, and specifically its relation to sisters' involvement. Gaining an understanding of these beliefs can help promote the self-determination of their siblings with IDD, and where appropriate, move from the traditional rigid guardianship to a supported decision-making model.</p> <hd id="AN0175443517-28">Disclosure Statement</hd> <p>No potential conflict of interest was reported by the author(s).</p> <ref id="AN0175443517-29"> <title> References </title> <blist> <bibl id="bib1" idref="ref13" type="bt">1</bibl> <bibtext> Al Khatib, S. A. (2012). Exploring the relationship among loneliness, self-esteem, self-efficacy and gender in United Arab Emirates college students. Europe's Journal of Psychology, 8 (1), 159 – 181.</bibtext> </blist> <blist> <bibl id="bib2" idref="ref64" type="bt">2</bibl> <bibtext> Amnie, G. A. (2018). An investigation of predictors of self-efficacy to cope with stress and implications for health education practice. 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  Data: Involvement, Readiness for Primary Caregiving, Loneliness, and Self-Efficacy: A Comparison between Adult Sisters and Brothers of Individuals with Intellectual and Developmental Disabilities
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  Data: English
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  Data: <searchLink fieldCode="AR" term="%22Adi+Sharabi%22">Adi Sharabi</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0002-7998-1344">0000-0002-7998-1344</externalLink>)<br /><searchLink fieldCode="AR" term="%22Ayelet+Siman+Tov%22">Ayelet Siman Tov</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22International+Journal+of+Disability%2C+Development+and+Education%22"><i>International Journal of Disability, Development and Education</i></searchLink>. 2024 71(2):270-286.
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  Data: Routledge. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals
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  Data: Y
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  Label: Page Count
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  Data: 17
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  Label: Publication Date
  Group: Date
  Data: 2024
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  Data: Journal Articles<br />Reports - Research
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  Data: <searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+Disability%22">Intellectual Disability</searchLink><br /><searchLink fieldCode="DE" term="%22Developmental+Disabilities%22">Developmental Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Siblings%22">Siblings</searchLink><br /><searchLink fieldCode="DE" term="%22Sibling+Relationship%22">Sibling Relationship</searchLink><br /><searchLink fieldCode="DE" term="%22Gender+Differences%22">Gender Differences</searchLink><br /><searchLink fieldCode="DE" term="%22Caregiver+Role%22">Caregiver Role</searchLink><br /><searchLink fieldCode="DE" term="%22Participant+Characteristics%22">Participant Characteristics</searchLink><br /><searchLink fieldCode="DE" term="%22Readiness%22">Readiness</searchLink><br /><searchLink fieldCode="DE" term="%22Decision+Making%22">Decision Making</searchLink><br /><searchLink fieldCode="DE" term="%22Self+Efficacy%22">Self Efficacy</searchLink><br /><searchLink fieldCode="DE" term="%22Psychological+Patterns%22">Psychological Patterns</searchLink><br /><searchLink fieldCode="DE" term="%22Family+Involvement%22">Family Involvement</searchLink>
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  Label: Geographic Terms
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  Data: <searchLink fieldCode="DE" term="%22Israel%22">Israel</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.1080/1034912X.2022.2092602
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  Label: ISSN
  Group: ISSN
  Data: 1034-912X<br />1465-346X
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Sisters and brothers play an important role in the lives of their siblings with intellectual and developmental disabilities (IDD), starting in childhood and commonly increasing in adulthood. The current study compared typically-developing adult sisters' and brothers' level of involvement in the care of their siblings with IDD. Beyond this, the study examined differences in sisters' and brothers' readiness for primary caregiving - including their readiness for guardianship and belief in their sibling's independent decision-making, loneliness, and self-efficacy, and how these variables predict their involvement. Participants included 175 Israeli adult (aged 18 years and older) siblings - 118 sisters and 57 brothers of individuals with IDD (Intellectual Disability and/or Autism Spectrum Disorder). The participants completed online questionnaires. Results revealed sex differences, with sisters reporting more social involvement, greater belief in their sibling's ability to make independent decisions, lower levels of loneliness, and higher self-efficacy than brothers. Additionally, hierarchical regression analyses revealed a unique sex difference in predicting siblings' involvement, with readiness for the future role of guardianship positively predicting involvement only among brothers. Variability in sisters' and brothers' involvement needs to be considered when exploring transition planning to primary caregiving, including guardianship and supported decision-making.
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  Data: 2024
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        Value: 10.1080/1034912X.2022.2092602
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      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 17
        StartPage: 270
    Subjects:
      – SubjectFull: Foreign Countries
        Type: general
      – SubjectFull: Adults
        Type: general
      – SubjectFull: Intellectual Disability
        Type: general
      – SubjectFull: Developmental Disabilities
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      – SubjectFull: Participant Characteristics
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      – SubjectFull: Readiness
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      – SubjectFull: Decision Making
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      – SubjectFull: Self Efficacy
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      – SubjectFull: Family Involvement
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      – SubjectFull: Israel
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      – TitleFull: Involvement, Readiness for Primary Caregiving, Loneliness, and Self-Efficacy: A Comparison between Adult Sisters and Brothers of Individuals with Intellectual and Developmental Disabilities
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