"Whatever you want, whatever you need?" How professional caregivers do justice to the wishes and preferences of institutionalized aged intellectually disabled people; a qualitative study

Abstract

Title “Whatever you want, whatever you need?” How professional caregivers do justice to the wishes and preferences of institutionalized aged intellectually disabled people; a qualitative study. Background In general, people with an intellectual disability have difficulties accomplishing self-care. At the onset of 50 years, they run the risk of increasing difficulties performing self- care. The feeling of control, despite dependency, has a positive effect on wellbeing. Therefore, it is important that professional caregivers tune their care to someone’s wishes /preferences. It is unknown how professional caregivers do justice to institutionalized intellectually disabled people’s wishes/preferences. Aim To explore how professional caregivers notice and meet the wishes/preferences of institutionalized, moderately intellectually disabled people aged > 50 years with regard to self-care. Method A descriptive qualitative study was conducted. Nine duos of professional caregivers and clients were interviewed. Observations and exploration of the clients’ care plans were compared with the interview findings. Data were analysed according Quagol, using QDA miner. Results Eight themes emerged: basic assumptions, knowledge, attitude, skills, noticing wishes/preferences, meeting wishes/preferences, bending wishes/preferences and not meeting wishes/preferences. Professional caregivers utilized knowledge, attitude and skills to notice, meet and/or bend wishes/preferences, not only with respect to self-care but to all aspects of life. Wishes/preferences could be left unnoticed if professional caregivers acted from their own point of view, leading to negative consequences. Professional caregivers wanted to bend wishes/preferences if wishes/preferences collided with clients’ needs. Most professional caregivers decided unconscious what they considered was in the clients’ interest. Conclusion To properly notice, bend and meet wishes/preferences professional caregivers have to know and understand themselves as well as the client. Recommendations Time, good staff- and family relationships seem to be vital conditions for professional caregivers to know themselves and the client.