The lived experience of adult siblings of persons with complex dependency needs

Abstract

This qualitative study, embedded in some of the phenomenological ideas of Merleau-Ponty and Heidegger together with the social relational model of disability, explored the lived experience of adult siblings of persons with complex dependency needs. Since the siblings’ experience is often overlooked, phenomenology was used to give the opportunity for first hand voicing of experiences. Interpretative phenomenological analysis (IPA) was used to guide the date gathering and exploration as it further focuses on the particular and the individual. In accordance to IPA, data was generated through semi-structured interviews with 6 voluntary participants forming a homogenous group. Interviews were audiorecorded and transcribed verbatim, and each interview transcript was analysed in detail to elicit the findings. These findings were analysed in relation to research literature, the theoretical frameworks underpinning my study, and my personal interpretations. My research findings provide insights into the dynamics of various relationships experienced by sibling, namely the sibling relationship, the parental relationship, relations with oneself, and relations with others including peers and the general public. The understanding of these relationships brought to light many disabling experiences that siblings of persons with complex dependency needs endure through their life course. The lived experiences of siblings of persons with complex dependency needs geared siblings towards a certain being-in-the-world that led them to experience life circumstances differently from others. Siblings also pointed out to the lack of support they encounter and their common concern about their future. Participants demonstrated preoccupations about their parents’ being-towards-death and consequently their envisaged increased responsibilities and involvement in the life of their siblings with complex dependency needs. Worries about life commitments such as work, family time, financial issues, and available time in general were shared amongst participating siblings. In view of their anticipated increase in responsibilities and their future concerns, siblings request better supporting services that accommodate their individual needs as well as the personal care requirements of persons with complex dependency needs. Through adequate services siblings would be able to live up to their expressed sense of duty towards their brothers or sisters with complex dependency needs while at the same time carry on with their individual lives.