The experiences of adolescents living with a sibling with a moderate to severe intellectual disability

Abstract

Over time, intellectual disability has been mythologised into folklore, religion and culture resulting in patterns of thought, communication, actions, customs, beliefs and values related to intellectual disability specific to particular societies (Smith, 2002 in Edwardraj, Mumtaj, Prasad, Kuruvilla & Jacob, 2010:736). However, data on the perceptions related to intellectual disabilities in the general population, and specifically in the more rural areas are sparse. The individual with an intellectual disability may have a significant influence on his family members, as he or she may demand specific requirements and obligations of the family members, depending on the severity of the intellectual disability (Moyson & Roeyers, 2012:88). According to Mandleco, Frost Olsen, Dyches and Marshall (2003:365), relatively limited research has explored the relationship between the parents' and non-disabled siblings' functioning when living with an individual with an intellectual disability. The adolescent is in need of healthy support within the family system to help him during his unique process of change. Within families with intellectual disabilities, healthy functioning may be influenced or challenged (Graff, Neely-Barnes & Smith, 2008:240). However, according to Begum and Blacher (2011:1581) research indicates that there seems to be inconsistent findings on the manner in which individuals with intellectual disabilities have an impact on their non-disabled siblings. Therefore, it was the goal of this study to explore the experiences of adolescents living with a sibling with a moderate to severe intellectual disability. The family-systems theory could provide an appropriate theoretical framework to work from in order to explore the experiences of adolescents living with a sibling with a moderate to severe intellectual disability, seeing that the reciprocal influences of different sub-systems was explored. In order to achieve this goal a qualitative research approach was adopted. Applied research was considered the most suitable as the research findings emanating from this study could be used to propose recommendations regarding new problems or strengths identified and potential services that could be of benefit to families with children/siblings with moderate to severe intellectual disabilities. Only the identified non-disabled adolescents participated in this study. Research was conducted in the Carletonville area, Gauteng Province. The intrinsic case study was employed as the research design. The researcher recruited 10 (n=10) participants through two non-probability sampling techniques, namely purposive sampling, followed by snowball sampling. Semi-structured, one-on-one interviews were conducted to gather rich information from the participants. A pilot study was conducted in order to pre-test the interview schedule's effectiveness. Creswell's process for thematic data analysis was used to extrapolate themes and sub-themes. The trustworthiness of the data interpretation was confirmed through reflexivity, peer debriefing and an audit trail. The outcome of the empirical study revealed that the participants were unfamiliar with the term intellectual disability and that they demonstrated a limited ability to define intellectual disability as a phenomenon. As a result, they had a lack of knowledge regarding their siblings' functioning, as well as necessary current and future support needed. It seemed as if the lower the socio-economic background of the participant, the less likely he was to have basic knowledge and insight into his sibling's condition and the implications thereof. It was concluded that the general public seems to have a lack of knowledge regarding intellectual disability as a phenomenon, as participants were of the opinion that the public acted in a discriminative manner towards their siblings and persons with intellectual disabilities. The experiences of adolescents living with a sibling with a moderate to severe intellectual disability was explored in terms of their emotions; their relationships with their sibling and with their parents; as well as the influence of living with their sibling in their lives. Amongst other findings, participants experienced that their siblings received more attention or preferential treatment from their parents. As a result, emotions of sadness and anger were experienced. Participants were concerned about their siblings' care and support. They experienced anxiety, stress and guilt regarding their siblings in terms of care and support; therefore their schoolwork was influenced negatively. The siblings with an intellectual disability influenced the participants' lives positively as their understanding of individuals with intellectual disabilities was enhanced. Lastly, participants were in favour of support and educational groups, professional counselling, as well as guidance in terms of coping mechanisms to support them and their families. The guidelines proposed for practitioners working with families with an individual with moderate to severe intellectual disabilities are the following: Educate parents and family members involved regarding intellectual disability as phenomenon in order to eliminate misconceptions, unrealistic expectations and family conflict; enhance parents' awareness of existing support services in their surrounding communities; implement community awareness projects in cooperation with the existing centres for people with intellectual disabilities in order to empower the community with adequate knowledge regarding intellectual disability. In order to reduce stigma and discrimination associated with intellectual disability, considering the need for support services identified through this research; practitioners should ensure the rendering of therapeutic services, as well as support and educational groups. In rendering these services practitioners can play a role in reinforcing such families' wellbeing, socio-emotional functioning and interpersonal relationships.