title: Exploring barriers to participation and adoption of telehealth and telecare within the Whole System Demonstrator trial: a qualitative study.
abstract: BACKGROUND
  Telehealth (TH) and telecare (TC) interventions are increasingly valued for supporting self-care in ageing populations; however, evaluation studies often report high rates of non-participation that are not well understood. This paper reports from a qualitative study nested within a large randomised controlled trial in the UK: the Whole System Demonstrator (WSD) project. It explores barriers to participation and adoption of TH and TC from the perspective of people who declined to participate or withdrew from the trial.
  
  
  METHODS
  Qualitative semi-structured interviews were conducted with 22 people who declined to participate in the trial following explanations of the intervention (n = 19), or who withdrew from the intervention arm (n = 3). Participants were recruited from the four trial groups (with diabetes, chronic obstructive pulmonary disease, heart failure, or social care needs); and all came from the three trial areas (Cornwall, Kent, east London). Observations of home visits where the trial and interventions were first explained were also conducted by shadowing 8 members of health and social care staff visiting 23 people at home. Field notes were made of observational visits and explored alongside interview transcripts to elicit key themes.
  
  
  RESULTS
  Barriers to adoption of TH and TC associated with non-participation and withdrawal from the trial were identified within the following themes: requirements for technical competence and operation of equipment; threats to identity, independence and self-care; expectations and experiences of disruption to services. Respondents held concerns that special skills were needed to operate equipment but these were often based on misunderstandings. Respondents' views were often explained in terms of potential threats to identity associated with positive ageing and self-reliance, and views that interventions could undermine self-care and coping. Finally, participants were reluctant to risk potentially disruptive changes to existing services that were often highly valued.
  
  
  CONCLUSIONS
  These findings regarding perceptions of potential disruption of interventions to identity and services go beyond more common expectations that concerns about privacy and dislike of technology deter uptake. These insights have implications for health and social care staff indicating that more detailed information and time for discussion could be valuable especially on introduction. It seems especially important for potential recipients to have the opportunity to discuss their expectations and such views might usefully feed back into design and implementation.
authors: Health Sciences Research Group (Primary Care), The University of Manchester, 5th Floor, Williamson Building, Oxford Rd, Manchester, UK. caroline.sanders@manchester.ac.uk
authors: Caroline
authors: C
authors: Sanders
authors: Anne
authors: A
authors: Rogers
authors: Robert
authors: R
authors: Bowen
authors: Peter
authors: P
authors: Bower
authors: Shashivadan
authors: S
authors: Hirani
authors: Martin
authors: M
authors: Cartwright
authors: Ray
authors: R
authors: Fitzpatrick
authors: Martin
authors: M
authors: Knapp
authors: James
authors: J
authors: Barlow
authors: Jane
authors: J
authors: Hendy
authors: Theti
authors: T
authors: Chrysanthaki
authors: Martin
authors: M
authors: Bardsley
authors: Stanton P
authors: SP
authors: Newman
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D004059:Diffusion of Innovation; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006301:Health Services Needs and Demand; D006792:House Calls; D006801:Humans; D008131:London; D008297:Male; D008875:Middle Aged; D010352:Patient Dropouts / Q000523:psychology; D036301:Qualitative Research; D012648:Self Care; D017216:Telemedicine