The role of digital communication in patient–clinician communication for NHS providers of specialist clinical services for young people [the Long-term conditions Young people Networked Communication (LYNC) study]: a mixed-methods study

Griffiths, Frances; Armoiry, Xavier; Atherton, Helen; Bryce, Carol; Buckle, Abigail; Cave, Jonathan; Court, Rachel; Hamilton, Kathryn; Dliwayo, Thandiwe Rebecca; Dritsaki, Melina; Elder, Patrick; Forjaz, Vera; Fraser, Joe; Goodwin, Richard L.; Huxley, Caroline J.; Ignatowicz, Agnieszka; Karasouli, Eleni; Kim, Sung Wook; Kimani, Peter K.; Madan, Jason; Matharu, Harjit; May, Mike; Musumadi, Luhanga; Paul, Moli; Raut, Gyanu; Sankaranarayanan, Sailesh; Sujan, Mark-Alexander; Sutcliffe, Paul; Svahnstrom, Isabelle; Taggart, Frances M.; Uddin, Ayesha; Verran, Alice; Sturt, Jackie

doi:10.3310/hsdr06090

Cited by 16 publications

(45 citation statements)

References 309 publications

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“…Our findings compare similarly to results reported in the Long-term Conditions Young People Networked Communication study in the UK where youth aged 16-24 engaged with their clinicians digitally, especially results which indicated that young people preferred communicating with their clinician on sensitive issues via email or text. 34 Likewise, it is often felt that technology may assist us in overcoming some of the challenges of delivery to rural and remote communities. As Hampshire et al 35 found in three African countries in urban and rural sites, seeking advice and information from the internet was an increasingly significant use of technology across all locations.…”

Section: Discussionmentioning

confidence: 99%

Attitudes of rural communities towards the use of technology for health purposes in New Zealand: a focus group study

et al. 2020

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ObjectivesExamine attitudes to using online health and wellness services, and determine what barriers may exist to this in two rural communities in New Zealand.DesignA thematic analysis informed by a social constructivist paradigm explored the attitudes of youth and adults to give voice to these communities. Eighteen focus groups—nine in each region—were held for an hour each, with between three and nine participants in each group.SettingTwo rural areas at the Northern and Southern ends of New Zealand were chosen. In each area, we partnered with a local health centre providing primary care services. Three localities were identified within each region where we conducted the data collection.ParticipantsParticipants were youth aged 12–15 years, aged 16–20 years and adults over 21 years. Overall, 74 females and 40 males were recruited. Recruitment occurred through schools, community organisations or personal contacts of the facilitators, who were youth workers in their respective communities. Ethnicity of the participants was representative of each area, with a higher percentage of Māori participants in Northland.ResultsEight themes were identified which described participants’ attitudes to technology use in healthcare. Themes covered accessibility, cost, independence, anonymity and awareness issues: technology makes health information easily accessible; access to technology can be limited in rural communities; technology can reduce the cost of healthcare but it is too expensive for some; technology increases independence and autonomy of people’s own health; independent healthcare decisions come with risks; anonymity encourages people to seek help online; technology can help raise awareness and provide peer-support for people with health issues; technology impacts on social relationships.ConclusionsParticipants—particularly youth—were generally positive about the role of technology in healthcare delivery, and interested in ways technology could improve autonomy and access to health and wellness services.

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Section: Discussionmentioning

confidence: 99%

Attitudes of rural communities towards the use of technology for health purposes in New Zealand: a focus group study

et al. 2020

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“…A total of 5 clinics from the wider LYNC study participated in this substudy. LYNC study clinics spanned England and Wales and provided specialist National Health Service (NHS) care to 16- to 24-year-olds with long-term mental or physical health conditions [ 11 , 13 ]. The majority of clinicians and participants in the main LYNC study clinics were engaging in digital consultations in addition to routine clinic appointments.…”

Section: Methodsmentioning

confidence: 99%

“…The objective of this study was to explore how engagement in self-care is impacted by the use of digital consulting including effects, costs, and necessary safety and ethical safeguards. This was undertaken by interviewing and observing the practice of 173 clinical team members and 165 young people across 20 clinics providing care for young adults with 13 different physical and mental health conditions [ 11 , 13 ]. Young people and their clinicians value digital consulting as providing access to health care in a timely way and at a point when it makes a difference to how the young people manage their health [ 11 ].…”

Section: Introductionmentioning

confidence: 99%

“…As part of the LYNC study, a series of systematic and scoping reviews were undertaken alongside patient involvement to identify generic PROs and PROMs that assessed the impact of types of patient-clinician interactions (not specifically digital interactions) on patient engagement with their health as an outcome. This work is published elsewhere [ 13 ], but in summary, an initial systematic review to identify existing candidate generic PROMs to be used for evaluating digital consulting was undertaken. The review generated 28 generic PROMs from which we expected to identify an existing PROM that would be fit for purpose.…”

Section: Introductionmentioning

confidence: 99%

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Eliciting the Impact of Digital Consulting for Young People Living With Long-Term Conditions (LYNC Study): Cognitive Interviews to Assess the Face and Content Validity of Two Patient-Reported Outcome Measures

Sturt¹,

Dliwayo²,

Forjaz³

et al. 2018

J Med Internet Res

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BackgroundDigital consulting, using email, text, and Skype, is increasingly offered to young people accessing specialist care for long-term conditions. No patient-reported outcome measures (PROMs) have been evaluated for assessing outcomes of digital consulting. Systematic and scoping reviews, alongside patient involvement, revealed 2 candidate PROMs for this purpose: the patient activation measure (PAM) and the physician’s humanistic behaviors questionnaire (PHBQ). PAM measures knowledge, beliefs, and skills that enable people to manage their long-term conditions. PHBQ assesses the presence of behaviors that are important to patients in their physician-patient interactions.ObjectiveThis study aimed to assess the face and content validity of PAM and PHBQ to explore whether they elicit important outcomes of digital consulting and whether the PROMs can isolate the digital consultation component of care.MethodsParticipants were drawn from 5 clinics providing specialist National Health Service care to 16- to 24-year-olds with long-term health conditions participating in the wider LYNC (Long-Term Conditions, Young People, Networked Communications) study. Overall, 14 people undertook a cognitive interview in this substudy. Of these, 7 participants were young people with either inflammatory bowel disease, cystic fibrosis, or cancer. The remaining 7 participants were clinicians who were convenience sampled. These included a clinical psychologist, 2 nurses, 3 consultant physicians, and a community youth worker practicing in cancer, diabetes, cystic fibrosis, and liver disease. Cognitive interviews were transcribed and analyzed, and a spreadsheet recorded the participants’ PROM item appraisals. Illustrative quotes were extracted verbatim from the interviews for all participants.ResultsYoung people found 11 of the PAM 13 items and 7 of the additional 8 PAM 22 items to be relevant to digital consulting. They were only able to provide spontaneous examples of digital consulting for 50% (11/22) of the items. Of the 7 clinicians, 4 appraised all PAM 13 items and 20 of the PAM 22 items to be relevant to evaluating digital consulting and articulated operationalization of the items with reference to their own digital consulting practice with greater ease than the young people. Appraising the PHBQ, in 14 of the 25 items, two-thirds of the young people’s appraisals offered digital consulting examples with ease, suggesting that young people can detect and discern humanistic clinician behaviors via digital as well as face-to-face communication channels. Moreover, 17 of the 25 items were appraised as relevant by the young people. This finding was mirrored in the clinician appraisals. Both young people and the clinicians found the research task complex. Young participants required considerably more researcher prompting to elicit examples related to digital consulting rather than their face-to-face care.ConclusionsPAM and PHBQ have satisfactory face and content validity for evaluating digital consulting to warrant proceeding to psychometr...

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“…This could include the use of digital technologies for communication between clinicians and ADHD patients, such as FaceTime (Apple Inc., Cupertino, CA, USA), Skype, WhatsApp (WhatsApp Inc., Menlo Park, CA, USA) or text messaging, which may support independence and accessibility of services, and may have particular benefits in rural areas where there is a decreased rate of service use. [186][187][188] The findings from this sample, that going on to higher education and having parents who are able to advocate can positively influence transition, indicate a possible association between transition and social capital (resources that increase the ability to advance individual interests). 189 Other studies have suggested that low socioeconomic status can increase the odds of an ADHD patient not receiving services, 190 and that social networks of white and higher socioeconomic status families contain higher proportions of health-care workers to help access support.…”

Section: Being Investedmentioning

confidence: 99%

The transition from children’s services to adult services for young people with attention deficit hyperactivity disorder: the CATCh-uS mixed-methods study

Janssens

Eke

Price

et al. 2020

Health Serv Deliv Res

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Background Attention deficit hyperactivity disorder was previously seen as a childhood developmental disorder, so adult mental health services were not set up to support attention deficit hyperactivity disorder patients who became too old for child services. To our knowledge, this is the first in-depth study of the transition of attention deficit hyperactivity disorder patients from child to adult health services in the UK. Objectives Our objectives were to explore how many young people with attention deficit hyperactivity disorder are in need of services as an adult, what adult attention deficit hyperactivity disorder services are available and how attention deficit hyperactivity disorder stakeholders experience transition from child to adult services. Design An interactive mixed-method design was adopted with three study streams: (1) a 12-month surveillance study with 9-month follow-up to find out how many young people required ongoing medication when they were too old for child services (929 surveys completed by children’s clinicians); (2) a mapping study to identify and describe services for young adults with attention deficit hyperactivity disorder (2686 respondents to online surveys for patients and health workers and freedom of information requests to service providers and commissioners); and (3) a qualitative study to explore key stakeholders’ experiences of transition from child to adult services (144 interviews with 64 attention deficit hyperactivity disorder patients, 28 parents and 52 health clinicians; 38 working in child or adult secondary health services and 14 general practitioners). Members of the public advised at each stage of the study. Results When corrected for non-response and case ascertainment, the annual number of young people with an ongoing need for medication for attention deficit hyperactivity disorder lies between 270 and 599 per 100,000 people aged 17–19 years. Among 315 individuals eligible for transition, 64% were accepted, but only 22% attended their first adult services appointment. Our interactive map describes 294 unique services for adults with attention deficit hyperactivity disorder across the UK, of which 44 are ‘dedicated’ attention deficit hyperactivity disorder services. Few services provide the full range of recommended provision; most focus on diagnosis and medication. Services are unevenly distributed across the UK, with nearly all ‘dedicated’ services being in England. Exploring stakeholders’ experiences revealed how invested the stakeholders are in continuing attention deficit hyperactivity disorder treatment and how the architecture of services affects transition. An association between attention deficit hyperactivity disorder, education and continuance of medication into young adulthood, plus parent involvement and feeling prepared for transition and adult life with attention deficit hyperactivity disorder, influenced investment. However, even with investment, how accessible adult services are, how patient needs fit with the remit of the adult service and the level of patient information available affect transition outcomes. The results also highlight how general practitioners can end up as care co-ordinators during transition by default. Limitations Transition estimates were based on those who want medication, so these indicate a minimum level of need. Conclusions Few of those who need ongoing support for attention deficit hyperactivity disorder successfully transfer to adult services, and a small proportion of those who transfer experience optimal transitional care. Adult attention deficit hyperactivity disorder service provision is patchy. Even among ‘dedicated’ services, few provide the whole range of National Institute for Health and Care Excellence-recommended treatments. Future work We need to evaluate various models of transitional care and adult attention deficit hyperactivity disorder provision, as well as develop and evaluate psychosocial interventions for young people and adults with attention deficit hyperactivity disorder. Trial registration Current Controlled Trials ISRCTN12492022. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 42. See the NIHR Journals Library website for further project information.

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The role of digital communication in patient–clinician communication for NHS providers of specialist clinical services for young people [the Long-term conditions Young people Networked Communication (LYNC) study]: a mixed-methods study

Cited by 16 publications

References 309 publications

Attitudes of rural communities towards the use of technology for health purposes in New Zealand: a focus group study

Attitudes of rural communities towards the use of technology for health purposes in New Zealand: a focus group study

Eliciting the Impact of Digital Consulting for Young People Living With Long-Term Conditions (LYNC Study): Cognitive Interviews to Assess the Face and Content Validity of Two Patient-Reported Outcome Measures

The transition from children’s services to adult services for young people with attention deficit hyperactivity disorder: the CATCh-uS mixed-methods study

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