Interactional guesstimating’: family carers’ experiences supporting profoundly intellectually disabled persons in decision-making- a constructivist grounded theory

Family carers supporting persons, living with profound intellectual and multiple disabilities in decision-making is critical, yet receives little attention. This dissertation addresses this need from family carers’ personal experiences. Background: Research shows us that family carers support approximately 80% of intellectually disabled people in their own homes and family care remains the predominant type of care and support for this group. The evidence base concerning the lives, contribution, health and wellbeing of family carers’ in addition to the persons they support, requires considerably strengthening. One such area is to understand how persons, living with profound intellectual and multiple disabilities, come to make informed decisions and how families support this activity. Aim: This research used a constructivist grounded theory approach and explored family carers’ experiences of supporting persons, living with profound intellectual and multiple disabilities, in decision-making. Methods: Following ethical approval, (March 2012) data were generated by: 1) Individual interviews with family carers (n=26) transcribed verbatim and 2) ‘A Carers Group’ (n=6) which met eight times over a twelve month period (January 2013-2014) facilitated through ‘dialogue and reflection’. 3) Field notes of meetings and carers’ diary recordings. Data Analysis consisted of initial, focused and theoretical coding of transcripts (Charmaz 2006) and memoing. Results: ‘Interactional Guesstimating: Growing confidence with uncertainty’ co-constructed with family carers indicates that supporting profoundly disabled persons in decision-making is a relational and learned experience combining intensive commitment and engagement, acquiring interactive, subjective and dynamic components of ‘knowing the person’. Described within the lenses of rights, understanding disability and personal development intense and extensive interactions represents a cyclical process of ‘Sensing a Union’, ‘Framing Representation’ and ‘Steering Activities’ required to support profoundly disabled people in decision making. Family carers’ use reflection and ‘questioning self’ to navigate these activities. Conclusion: This grounded theory evokes what Gilligan and Attanucci call the ‘care perspective’, which organises the relationship between self and other in terms of care and attachment rather than solely justice and equality. We propose a model of supporting decision-making that moves understanding of support beyond the view of ‘communication of needs and wishes as matter of fact’ or a ‘matter of entitlement’. Moreover, this approach conceptualises supporting decision-making as asserting value and meaning associated with the uniqueness and ways of expression(s) of the profoundly disabled individual. ix Contribution to new Knowledge To the best of our understanding, this is the first constructivist grounded theory of family carers’ experiences supporting persons, living with PIMD, in decision-making. This grounded theory highlights from personal experiences family carers’ success and challenges of the nebulous concept ‘supporting decision-making’. In proposing a model ‘Interactional Guesstimating’ to support people, living with a profound disability, in decision-making a progressive realisation as advocated in the ideology purported by the UN CRPD is proffered.