title: Family caring of older adults with intellectual disability and coping according to loci of responsibility.
abstract: BACKGROUND
  A complex interplay of factors is evident in the response of family caring for older adults with intellectual disability (ID). The aim of this study was to explore the interaction of these factors.
  
  
  METHODS
  Quantitative data on health and wellbeing, and coping strategies were obtained for carers and their adult children with ID. Qualitative data were from three focus groups conducted with 19 main family carers.
  
  
  RESULTS
  Carers varied in their health and wellbeing. Four overarching themes emerged from an initial interpretative phenomenological analysis of the qualitative data: loci of responsibility, impacts of caring and responses to it on health and wellbeing, transitioning care responsibilities, and interrelationships around the caring role. Further interrogation of data according to carers' coping strategies revealed three loci of responsibility, providing a point of convergence that related to carer experiences, plans for transition, and relationships within families. These loci of responsibility were having sole responsibility because there was no-one else, having sole responsibility because no-one could do it better, and sharing responsibility.
  
  
  CONCLUSIONS
  The loci of responsibility provide a means to understand carers' appraisal of their role and the degree of control they have over it, and may account for varied coping strategies adopted.
authors.affiliation: La Trobe Rural Health School, La Trobe University, P.O. Box 199, Bendigo, VIC, Australia. Electronic address: t.iacono@latrobe.edu.au.
authors.forename: Teresa
authors.initials: T
authors.lastname: Iacono
authors.affiliation: Department of Developmental Disability Neuropsychiatry, University of New South Wales, Sydney, Australia.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Evans
authors.affiliation: Department of Developmental Disability Neuropsychiatry, University of New South Wales, Sydney, Australia.
authors.forename: Adrian
authors.initials: A
authors.lastname: Davis
authors.affiliation: Department of Developmental Disability Neuropsychiatry, University of New South Wales, Sydney, Australia.
authors.forename: Anjali
authors.initials: A
authors.lastname: Bhardwaj
authors.affiliation: Department of Developmental Disability Neuropsychiatry, University of New South Wales, Sydney, Australia.
authors.forename: Beth
authors.initials: B
authors.lastname: Turner
authors.affiliation: Centre for Developmental Disability Health Victoria, Monash University, Melbourne, Australia.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Torr
authors.affiliation: Department of Developmental Disability Neuropsychiatry, University of New South Wales, Sydney, Australia; Centre for Healthy Brain Ageing, University of New South Wales, Sydney, Australia.
authors.forename: Julian N
authors.initials: JN
authors.lastname: Trollor
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D017028:Caregivers / Q000523:psychology*; D005260:Female; D017144:Focus Groups; D006304:Health Status; D006801:Humans; D008607:Intellectual Disability / Q000451:nursing*; D008297:Male; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D036301:Qualitative Research; D035781:Siblings / Q000523:psychology*; D012944:Social Support; D011795:Surveys and Questionnaires
keywords: Ageing; Australia; Coping; Family caregiver; Intellectual disability