Exploring barriers to participation and adoption of telehealth and telecare within the Whole System Demonstrator trial: a qualitative study

In the paper

“This finding resonates with previous qualitative research within trials highlighting the importance of how information is imparted and discussed can have a major impact on recruitment [12].”

What the sources say

• Supported

  The Abstract (Effects of change) reports that changes to how study information was presented increased the randomisation rate from 40% to 70%. The Background (Lessons learnt) says qualitative research identified changes needed to the content and delivery of information to maximise recruitment. This supports the citing sentence’s point about the impact of imparting and discussing information on trial recruitment. (LLM, conf=0.94)

  cites [12] Donovan J, Mills N, Smith M, Brindle L, Jacoby A, Peters T, Frankel S, Neal D, Hamdy F: Quality improvement report: improving design and conduct of randomised trials by embedding them in qualitative research: ProtecT (prostate testing for cancer and treatment) study. BMJ British medical journal (Clinical research ed). 2002, 325: 766-770. 10.1136/bmj.325.7367.766. source

In the paper

“Uncertainties regarding the technological aspects of the equipment did not seem to be mitigated by explanations presented at the home assessment visit. For example, the above respondent was not alone in thinking (following the home visit) that he would need to ‘type’ on a keyboard, when in reality no typing was involved, nor was there any need for familiarity with using a computer or the internet.”

In the paper

“Further examples illustrate the perception of TH and TC as appropriate for someone who was ‘a lot more ill’ (ID31) or if there was ‘no-one in the house’ (ID35).”

In the paper

“Comments made in interviews following the home visit indicated a high level of uncertainty regarding the technology being offered and that staff varied in their own knowledge of the intervention:”

In the paper

“Responses commonly indicated a strong sense of personal responsibility for health, illness and self care; and the interventions threatened to undermine such a sense of ‘control’ and current approaches to managing health problems:”

In the paper

“The three participants who withdrew from the trial after they had received the equipment, described some technical difficulties they had in getting the equipment to work (ID156, ID89), and false alarms due to faulty readings (ID92). They described the response to some of these problems as being ‘slow’ and ‘frustrating’, and one described how the proposed solution (an additional phone line) brought”

In the paper

“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.”

In the paper

“Respondents held concerns that special skills were needed to operate equipment but these were often based on misunderstandings.”

In the paper

“The patient then asked if she would be able to get lots of information from the internet and seemed to assume she might be able to use it for general purposes. However, she also went on to state that she was not at all certain she wanted to take part because she did not think she would know how to use it and because she did not think it would help.”

In the paper

“Most respondents indicated that they associated the use of telehealth and telecare with a high degree of dependency and ill health. In the majority of cases, respondents seemed to want to distance themselves from negative connotations of old age, sickness and dependence, and instead depicted themselves as having a strong sense of personal responsibility for maintaining health, self-care and”

In the paper

“Observation visits in the three sites also recorded views from staff that they had restricted time in which to explain the interventions because they were often required to conduct 8 or 9 home visits each day. As one member of staff stated, she always tried to explain the equipment but often met with very ‘blank faces’. On the day she was shadowed to conduct home visits, this particular member of”

In the paper

“Many accounts indicated that part of their existing approaches to self-care included a desire for their long-term health problems to fade into the background within day-to-day life, and responses reflected their busy and active lives.”

In the paper

“However, discussions about decisions to decline the trial indicated that concerns about competency to manage technology, or concerns about costs were sometimes compounded or left unaddressed at the home visit.”

In the paper

“However, whilst the majority of respondents in this study depicted themselves as too healthy and too independent for the interventions to be of value, the small number of respondents who depicted the people they cared for as ‘too sick’ or ‘too dependent’ demonstrate that these interventions can end up falling between two stools.”

In the paper

“In 3 cases potential recipients of the intervention were considered too ill or too dependent by their carers, and their views highlighted the importance of the identity and role of carers.”

In the paper

“Forty-two out of the 61 declined to take part in the qualitative study when telephoned.”

• Also stated in: § Participants and methods · plain

  “8 stated that they (or the person they cared for) were too ill or incapacitated; 8 did not understand the intervention and why they were being offered to join the trial; 11 did not think they needed TH or TC and/or did not want it; 3 thought the trial was too disruptive; 6 cited personal reasons (e.g. going away, death of a family member, work commitments) for not taking part.”

In the paper

“Comments regarding current services indicated that respondents were reluctant to disrupt services that were currently working well and that they often valued highly.”

In the paper

“Some respondents referred to the lack of integration of the trial with routine care and expressed surprise that doctors they consulted were not always aware of the trial (ID92).”

In the paper

“some viewed the intervention as having the potential to make them ‘hypochondriac’ (ID33P, ID145[wife]).”

In the paper

“Much of this satisfaction seemed to be associated with stable relationships that had been developed with specific service providers and there were concerns about what changes the equipment might bring to those relationships.”

In the paper

“Thus, they did not feel comfortable with the time pressures and disruption that equipment might bring, and some felt uneasy about the effects of intensive monitoring.”

In the paper

“Other respondents were also keen not to dwell too much on their illness, preferring not to be reminded if their recordings were abnormal because it would make them worry (ID35), or remind them that they were not ‘behaving’ (ID89).”

In the paper

“Such studies have found that common barriers to participation include general concerns with the trial setting and the research process; and more specifically, concerns about randomization [25-27].”

What the sources say

• Not checked yetcites [25] Mills EJ, Seely D, Rachlis B, Griffith L, Kumanan PW, Ellis P, Wright JR: Barriers to participation in clinical trials of cancer: a meta-analysis and systematic review of patient-reported factors. The Lancet Oncology. 2006, 7: 141-148. 10.1016/S1470-2045(06)70576-9. source
• Not checked yetcites [26] Featherstone K: Random allocation or allocation at random? Patients' perspectives of participation in a randomised controlled trial. Quality and Safety in Health Care. 1998, 317: 1177.
• Not checked yetcites [27] Ross S, Grant A, Counsell C, Gillespie W, Russell I, Prescott R: Barriers to participation in Randomised Controlled Trials: A systematic Review. Journal of Clinical Epidemiology. 1999, 52: 1143-1156. 10.1016/S0895-4356(99)00141-9. source

In the paper

“Additionally, evaluation studies and trials have reported recruitment difficulties with up to 80% refusal rate [6].”

What the sources say

• Not checked yetcites [6] Subramanian U, Hopp F, Lowery J, Woodbridge P, Smith D: Research in homecare telemedicine: challenges in patient recruitment. Telemedicine Journal and e-Health. 2004, 10: 155-161. 10.1089/tmj.2004.10.155. source

In the paper

“For example, ambivalent ideas about domiciliary oxygen therapy in one study indicated perceptions that it fostered greater independence, but on the other hand there were concerns that the technology could induce dependence on its use [16].”

What the sources say

• Not checked yetcites [16] Cornford CS: Lay beliefs of patients using domiciliary oxygen: a qualitative study from general practice. Br J Gen Pract. 2000, 50: 791-793.

In the paper

“Survey studies have been able to summarise and quantify some reasons why potential participants refuse to join such trials, with frequent reasons described as participants being too busy, discomfort with the technology, belief that the technology could not help them, and preference for existing services [6-8].”

What the sources say

• Not checked yetcites [6] Subramanian U, Hopp F, Lowery J, Woodbridge P, Smith D: Research in homecare telemedicine: challenges in patient recruitment. Telemedicine Journal and e-Health. 2004, 10: 155-161. 10.1089/tmj.2004.10.155. source
• Not checked yetcites [7] Mair FS, Goldstein P, Shiels C, Roberts C, Angus R, O'Connor J, Haycox A, Capewell S: Recruitment difficulties in a home telecare trial. Journal of Telemedicine and Telecare. 2006, 12: 26-28. source
• Not checked yetcites [8] Palmas W, Teresi J, Morin P, Wolff LT, Field L, Eimicke JP, Capps L, Prigollini A, Orbe I, Weinstock RS, et al: Recruitment and Enrollment of Rural and Urban Medically Underserved Elderly into a Randomized Trial of Telemedicine Case Management for Diabetes Care. Telemedicine and e-Health. 2006, 12: 601-607. 10.1089/tmj.2006.12.601. source

In the paper

“They found that patients were ambivalent about the benefits and drawbacks of technology because whilst technology can be pivotal in making patients autonomous, it also imposes heavy restrictions that are intimately interwoven with the nature of the particular disease and with the patients’ personal life trajectory [17].”

What the sources say

• Not checked yetcites [17] Lehoux P, Saint-Arnaud J, Richard L: The use of technology at home: what patient manuals say and sell vs. what patients face and fear. Sociol Health & Ill. 2004, 26: 617-644. 10.1111/j.0141-9889.2004.00408.x. source

In the paper

“McCreadie and Tinker also stress the importance of researching ‘felt need’ because their respondents were often managing bravely in difficult circumstances but did not see themselves as needing help [20].”

What the sources say

• Not checked yetcites [20] McCreadie C, Tinker A: The Acceptability of Assistance Technology to Older People. Ageing & Society. 2005, 25: 91-110. 10.1017/S0144686X0400248X. source

In the paper

“Gitlin et al., highlight that acceptability of assistive technologies for older people is dependent on whether the device is perceived to support or undermine their sense of identity [18]”

What the sources say

• Not checked yetcites [18] Gitlin LN, Luborsky MR, Schemm RL: Emerging concerns of older stroke patients about assistive devices. Gerontologist. 1998, 38: 169-180. 10.1093/geront/38.2.169. source

In the paper

“Additionally, perceived priorities regarding discussions on the potential benefits of remote monitoring are often based on assumptions rather than empirical understanding [24].”

What the sources say

• Not checked yetcites [24] Finch T, Mort M, May C, Mair F: Telecare: perspectives on the changing role of patients and citizens. J Telemed Telecare. 2005, 11: 51-53. source

In the paper

“and there has been some concern amongst key stakeholders regarding the impact of telecare interventions on autonomy associated with close surveillance [19].”

What the sources say

• Not checked yetcites [19] Percival J, Hanson J: Big brother or brave new world? Telecare and its implications for older people's independence and social inclusion. Critical Social Policy. 2006, 26: 888-909. 10.1177/0261018306068480. source

In the paper

“A focus on the reasons for non-participation in the trial is important because the problems of non-participation and barriers to adoption of TH and TC have been acknowledged but not yet addressed in published evidence [23].”

What the sources say

• Not checked yetcites [23] McCartney M: Show us the evidence for telehealth. Br Med J. 2012, 344: e469-10.1136/bmj.e469. source

In the paper

“It also implies that interventions should be tailored to ensure they will fit in with life circumstances and individual approaches to self-management because one intervention is unlikely to suit all people with the same long-term condition.”

In the paper

“Given the assumptions about appropriate candidacy for telehealth and telecare evident amongst respondents here, and concerns about technology and service changes, it seems important for potential recipients to have the opportunity to discuss their expectations and additional common concerns about technological aspects of equipment and service changes prior to installation.”

In the paper

“In keeping with an iterative approach common in qualitative research, analysis of the initial interviews informed subsequent interviews and prompted additional observational data collection from home visits where the intervention and the trial were explained as part of the consent process.”

• Also stated in: § Participants and methods · plain

  “Field notes were made of observational visits and explored thematically alongside interview data.”

In the paper

“Whilst the sample was opportunistic, we ensured that we continued to follow-up willing participants until we reached saturation in the data analysis, and we conducted interviews iteratively, whereby the analysis of initial interviews was used to inform further collection.”

In the paper

“This indicates that more detailed information and time for discussion could be valuable when introducing these interventions for the first time.”

In the paper

“Additionally, these findings suggest the need for closer proximity between innovation design and evaluation, so that critical insights might usefully feed back into design and implementation [11,13] ensuring interventions are ‘minimally disruptive’ for recipients [42].”

What the sources say

• Not checked yetcites [11] Murray E, Treweek S, Pope C, MacFarlane A, Ballini L, Dowrick C, Finch T, Kennedy A, Mair F, O'Donnell C, et al: Normalisation process theory: a framework for developing, evaluating and implementing complex interventions. BMC Medicine. 2010, 8 (63): -10.1186/1741-7015-8-63. source
• Not checked yetcites [13] Greenhalgh T, Hinder S, Stramer K, Bratan T, Russell J: Adoption, non-adoption, and abandonmentof a personal electronic health record: case study of HealthSpace. Br Med J. 2010, 341: c5814-10.1136/bmj.c5814. source
• Not checked yetcites [42] May C, Montori V, Mair F: We need minimally disruptive medicine. Br Med J. 2009, 339: 485-487. source

In the paper

“It also needs to be recognized that this is a study within a randomized controlled trial and the trial itself may have had some influence on decisions to use telehealth and telecare.”

In the paper

“Transcript data and field notes were organised with aid of Atlas.ti and the data were analysed thematically using some of the techniques of a grounded theory approach including constant comparison whereby we compared the data across cases to elicit common key themes and unusual cases [30].”

What the sources say

• Not checked yetcites [30] Green J, Thorogood N: Qualitative Methods for Health Research. 2004, Sage, London

In the paper

“Previous studies have described the challenges brought by the new ‘work’ and scrutiny associated with such interventions [12,38,39] and where the disruption of normalised everyday practices and interactions regarding management have been recognised a major barrier to the integration of e-health interventions into routine care and management [13,40,41].”

What the sources say

• Not checked yetcites [12] Donovan J, Mills N, Smith M, Brindle L, Jacoby A, Peters T, Frankel S, Neal D, Hamdy F: Quality improvement report: improving design and conduct of randomised trials by embedding them in qualitative research: ProtecT (prostate testing for cancer and treatment) study. BMJ British medical journal (Clinical research ed). 2002, 325: 766-770. 10.1136/bmj.325.7367.766. source
• Not checked yetcites [38] Nicolini D: The work to make telemedicine work: a social and articulative view. Soc Sci Med. 2006, 62: 2754-2767. 10.1016/j.socscimed.2005.11.001. source
• Not checked yetcites [39] Oudshoorn N: Diagnosis at a distance: the invisible work of patients and healthcare professionals in cardiac telemonitoring technology. Sociol Health & Ill. 2008, 30: 272-288. 10.1111/j.1467-9566.2007.01032.x. source
• Not checked yetcites [13] Greenhalgh T, Hinder S, Stramer K, Bratan T, Russell J: Adoption, non-adoption, and abandonmentof a personal electronic health record: case study of HealthSpace. Br Med J. 2010, 341: c5814-10.1136/bmj.c5814. source
• Not checked yetcites [40] May C, Gask L, Atkinson T, Ellis N, Mair F, Esmail A: Resisting and promoting new technologies in clinical practice: the case of telepsychiatry. Social Science & Medicine. 2001, 52: 1889-1901. 10.1016/S0277-9536(00)00305-1. source
• Not checked yetcites [41] May C, Finch T: Implementing, Embedding, and Integrating Practices: An Outline of Normalization Process Theory. Sociology. 2009, 43: 535-554. source

In the paper

“One of the limitations of the study is that it is based on a small group that is primarily a convenience sample due to the difficulties in recruiting people who declined the trial.”

In the paper

“This finding resonates with the analysis of May et al. who suggest that poor uptake of and adherence to interventions for complex chronic conditions are often due to the heavy burden on patients and the lack of congruence with patients’ perspectives on care [42].”

What the sources say

• Not checked yetcites [42] May C, Montori V, Mair F: We need minimally disruptive medicine. Br Med J. 2009, 339: 485-487. source

In the paper

“Within the context of a trial, the ability to encourage participation is restricted through the ethical constraints of a technology that as yet lacks firm evidence.”

In the paper

“The whole approach to analysis reflected elements of both deduction and induction because we had some preliminary ideas about factors that might influence decisions to decline participation (based on previous research in the field), but we were also open to being surprised by the data in order to allow new and unexpected findings to emerge.”

In the paper

“There were also only a small number of those who withdrew from the trial within this sample.”

In the paper

“However, circumstances of recruitment necessitated an opportunistic approach. This is because sampling was contingent upon health and social care staff within the trial sites gaining verbal consent from potential participants at the home assessment visit to be contacted by the evaluation team, and this did not systematically happen.”

In the paper

“Previous research demonstrates that people are often keen to distance themselves from negative stereotypes of ill health and ageing [34], and that health-related interventions, including telehealth and telecare, can be perceived to undermine identity and autonomy, especially amongst older people [19,20,35].”

What the sources say

• Not checked yetcites [34] Sanders C, Donovan J, Dieppe P: The significance and consequences of having painful and disabled joints in older age: co-existing accounts of normal and disrupted biographies. Sociol Health Illn. 2002, 24: 227-253. 10.1111/1467-9566.00292. source
• Not checked yetcites [19] Percival J, Hanson J: Big brother or brave new world? Telecare and its implications for older people's independence and social inclusion. Critical Social Policy. 2006, 26: 888-909. 10.1177/0261018306068480. source
• Not checked yetcites [20] McCreadie C, Tinker A: The Acceptability of Assistance Technology to Older People. Ageing & Society. 2005, 25: 91-110. 10.1017/S0144686X0400248X. source
• Not checked yetcites [35] Yardley L, Donovan-Hall M, Francis K, Todd C: Older people's views of advice about falls prevention: a qualitative study. Health Education Research Theory and Practice. 2006, 21: 508-517. source

In the paper

“Despite these factors, the sample does include a mix of men and women with both telehealth and telecare needs, and the strength of the study lies in the focus on a group of people who are not usually considered within a trial evaluation and who therefore represent an often hidden group with important viewpoints on the intervention focused upon.”

In the paper

“Three members of the team (CS, RB, AR) independently coded interview data using an open coding technique in Atlas.ti and each member of the team entered codes into separate versions of an Atlas.ti hermeneutic unit.”

• Also stated in: § Participants and methods · plain

  “These initial codes were discussed at regular team meetings in order to develop and refine the initial codes into key themes.”

In the paper

“This highlights the importance of carers’ perspectives when evaluating such interventions, and the need for a wider range of programmes to address carers’ diverse needs [37].”

What the sources say

• Not checked yetcites [37] Magnusson L, Hanson E, Nolan M: The impact of informationand communication technology on family carers of older people and professionals in Sweden. Ageing & Society. 2005, 25: 693-713. 10.1017/S0144686X05003673. source

In the paper

“In this sense, the study offers ‘transferability’ of findings rather than ‘generalizability’ and is in keeping with the common goals of qualitative research, whereas the emphasis is placed on the latter in quantitative research [43].”

What the sources say

• Not checked yetcites [43] Sandelowski M: Using Qualitative research. Qual Health Res. 2004, 14: 1366-1386. 10.1177/1049732304269672. source

In the paper

“With additional recruits from Cornwall and Kent, we were able to achieve a wide variation of participants with the various health conditions as well as social care needs (see table 1).”