'A voyage of grief and beauty': supporting a dying family member with an intellectual disability.
This article reports on a small research project designed to reveal what it is like to support a dying family member with an intellectual disability in a community setting. Five open-ended interviews were conducted with individuals who had experienced this phenomenon. Three thematic elements which lay within the experience of being a family support person were elucidated through hermeneutic phenomenological analysis of interview audio-recordings, verbatim transcripts and field notes. Collectively, these themes (Interlocked Companionship, Search for New Balance and Permeable Interaction) created a metaphorical understanding that participants had navigated a voyage of grief and beauty'. Rhetorical consideration of the research findings generated recommendations for tertiary, palliative care and intellectual disability support services. These are presented along with suggestions for future research.
Marlow
Susan
S
Whitireia Community Polytechnic, New Zealand. sue.marlow@whitireia.ac.nz
Martin
Margi
M
D000223:Adaptation, Psychological; D000328:Adult; D001293:Attitude to Death; D001294:Attitude to Health; D002675:Child, Preschool; D004645:Empathy; D005086:Existentialism / Q000523:psychology; D005190:Family / Q000523:psychology*; D005260:Female; D006117:Grief; D006801:Humans; D007398:Interpersonal Relations; D008016:Life Change Events; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D009520:New Zealand; D015404:Nursing Methodology Research; D010166:Palliative Care / Q000379:methods / Q000523:psychology*; D010344:Patient Advocacy; D019989:Persons with Intellectual Disabilities / Q000523:psychology*; D036301:Qualitative Research; D012944:Social Support; D011795:Surveys and Questionnaires; D013561:Symbolism