Self-reported support needs and available support resources for siblings (6-12 years) of children with intellectual disability and/or visual impairment in the Netherlands and Belgium: do they match?

Having a brother or sister with a disability can impact the well-being and mental health of their siblings. For example, in a recent meta-analysis it has been found that siblings of children with chronic health conditions ‘may be at increased risk of depression’ (Martinez et al., 2022). In order to gain understanding of the experiences of these siblings, several studies including interviews with siblings of children with chronic health conditions have been done (Mandleco & Webb, 2015; Moyson & Roeyers, 2012; Vella Gera et al., 2021). Based on these interviews, implications were made about the support needs of siblings. It has for example been concluded that siblings need support with dealing with the behaviour of their brother or sister, or will benefit from learning that they are not alone in their experiences (Mandleco & Webb, 2015; Moyson & Roeyers, 2012). In other studies, siblings were asked about their support needs directly. For example, one study investigated the support needs of siblings (age 12-14 years) of children with cancer through focus groups and one-on-one interviews with siblings and caregivers, resulting in 10 domains of need (Patterson et al., 2011). Another study used retrospective one-on-one interviews with adult siblings of persons with disabilities or chronic illness, focusing both on their childhood experiences and the support they missed (Hanvey et al., 2022). A third study used questionnaires and one-on-one interviews about online support needs with siblings (age 11-21 years) of children with chronic conditions (Joosten et al., 2019). However, no studies have been found in which school age (6-12 years) siblings of children with intellectual disability (ID) or visual impairment (VI) were interviewed directly about their support needs. Focusing on the other end, the support that is being offered to siblings, several systematic reviews about studied sibling interventions have been computed. For example in a recent systematic mixed-methods review it has been found that the researched sibling support programs can improve sibling well-being, although research methods are not always sound and accessibility could be improved (Wolff et al., 2022). Looking more into which resources are accessible, the available support sources for siblings of youth with chronic health conditions have recently been identified and analysed, finding that there are gaps in the available support (Nguyen et al., 2021). In order to offer support resources that match the support needs of siblings, more knowledge is needed about which interventions should be offered to which siblings and how (Wolff et al., 2022), Therefore, in the current study the support needs of siblings of children with intellectual disability (ID) and/or visual impairment (VI) will be investigated through one-on-one interviews with siblings between the age of six and twelve years old. Thematic analysis will be used to find themes of support needs, received support, and desired types of support. In addition, a systematic inventory of the available Dutch support resources for siblings in the Netherlands and Belgium will be made. Next, the available support will be linked to the self-reported support needs of siblings, by coding the support resources with a checkbox created based on the interview results. This study will provide the clinical field with an overview of support needs and available resources, and will point out which support needs still need to be met. The definition of support that will be used in this study is: ‘‘Supports are resources and strategies that aim to promote the development, education, interests, and personal well-being of a person and that enhance individual functioning’ (Luckasson et al., 2002, p. 151). Support needs are defined based on ‘felt needs’: “what the person wants or perceives as needed” (Thompson et al., 2009)

Cross-country psychometric study of the Negative Adjustment Scale to measure siblings’ adjustment to their brother’s or sister’s disability.

The Sibling Perceptions Questionnaire was developed three decades ago (Carpenter & Sahler, 1991) to measure the perceptions of children of having a brother or sister with cancer (siblings). The scale has both a child self-report version and a parent proxy-report version. The instrument has been used with different target groups (including siblings of children with chronic illnesses or disabilities) and adapted in several studies ever since, resulting in the composite Negative Adjustment Scale (Lobato & Kao, 2002) to measure sibling negative adjustment to the condition of the brother or sister. The internal consistency of this scale has been reported in several samples (e.g. Haukeland et al., 2020; Havermans et al., 2011; Lobato & Kao, 2002) and the construct and convergent validity were recently studied (Orm et al., 2021). So far the scale appears to be a reliable and valid instrument, that can be used when studying siblings and evaluating sibling targeted interventions. However, it is yet unclear whether the scale operates the same in samples from different countries and different age groups. Furthermore, previous studies found that parents report higher sibling negative adjustment than siblings do themselves (Guite et al., 2004; Taylor et al., 2001). We will investigate if this difference is found in a Dutch sample of siblings as well