title: The impact of prolonged disorders of consciousness on the occupational life of family members.
abstract: The impact of vegetative state (VS) and minimally conscious states (MCSs) on an individual is devastating. VS and MCSs may be transitional towards recovery, but may become permanent. Although devastating for the individual the nature of these conditions also has a profound effect on the family. This study examined the impact on the family member and the changes in the individuals' occupation. Six participants (spouses, partners or parents) were recruited to the study. Mixed methods were adopted to meet the requirements of the research and participants. Data were collected at 6 and 12 months post-injury, using time diaries, a questionnaire and semi-structured interviews. At 6 months post-injury the greatest amount of carers' time was allocated to occupations involving the person in a Disorder of Consciousness and less time to social and leisure activities. Participants had difficulty viewing the future, lacked the desire or capacity to engage in previously enjoyed activities. At 12 months those impacts were still evident although changing. The transition to balanced occupational activity is slow, requiring a number of catalysts to change. A conceptual framework for a return to balance is provided, and guidance on advice from family members to families in a similar situation is given.
authors: a Gill-Thwaites & Elliott Consultants, Royal Hospital for Neuro-Disability , London , UK.
authors: Karen
authors: K
authors: Elliott
authors: b Faculty of Health, Social Care and Education , Anglia Ruskin University , Chelmsford , UK.
authors: Andrew
authors: A
authors: McVicar
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D003244:Consciousness Disorders / Q000628:therapy; D004651:Employment / Q000523:psychology; D005190:Family / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D008137:Longitudinal Studies; D008875:Middle Aged; D036301:Qualitative Research; D011795:Surveys and Questionnaires; D013997:Time Factors; D055815:Young Adult
keywords: Family; Minimally conscious state; Occupation; Vegetative state