title: "I'm still here": Exploring what matters to people with intellectual disability during advance care planning.
abstract: BACKGROUND
  This study sought to identify, from the perspective of people with intellectual disabilities and life limiting conditions, the factors that strengthened and inhibited their Advance Care Planning.
  
  
  METHODS
  This in depth qualitative study explored the experiences of four people with intellectual disability and life limiting conditions, through interviews and documentation reviews.
  
  
  RESULTS
  There was strong agreement across all participants about what positively influenced Advance Care Planning, namely; going at my pace; supporting me to make my own choices; adapting the process to suit me, and, most importantly; continuing to support and plan the life I'm still living. With the exception of being comfortable/skilled in end-of-life support, the skills required of facilitators were similar to those required for all forms of person-centred planning.
  
  
  CONCLUSIONS
  The findings are encouraging and demonstrate that Advance Care Planning is a useful tool in ensuring that people with intellectual disability have control and choice over their lives, right to the end.
authors.affiliation: Christchurch, New Zealand.
authors.forename: Nicola
authors.identifier: http://orcid.org/0000-0002-4906-131X
authors.initials: N
authors.lastname: McKenzie
authors.affiliation: Donald Beasley Institute, Dunedin, New Zealand.|School of Post-Graduate Nursing Studies, University of Otago, Dunedin, New Zealand.
authors.forename: Brigit
authors.initials: B
authors.lastname: Mirfin-Veitch
authors.affiliation: Donald Beasley Institute, Dunedin, New Zealand.|School of Post-Graduate Nursing Studies, University of Otago, Dunedin, New Zealand.
authors.forename: Jennifer
authors.initials: J
authors.lastname: Conder
authors.affiliation: Wellington, New Zealand.
authors.forename: Sharon
authors.initials: S
authors.lastname: Brandford
mesh_terms: D000328:Adult; D032722:Advance Care Planning; D000368:Aged; D001293:Attitude to Death; D006801:Humans; D008607:Intellectual Disability; D008875:Middle Aged; D019989:Persons with Intellectual Disabilities / Q000523:psychology*; D013727:Terminal Care / Q000523:psychology*
keywords: advance care planning; death; disability; dying; end of life; intellectual disability