Using qualitative and co-design methods to inform the development of an intervention to support and improve physical activity in childhood cancer survivors: a study protocol for BEing Active after ChildhOod caNcer (BEACON)

Brown, Morven C.; Araújo‐Soares, Vera; Skinner, Roderick; Glaser, Adam; Sarwar, Naseem; Saxton, John; Montague, Kyle; Hall, Julie; Burns, Olivia; Sharp, Linda

doi:10.1136/bmjopen-2020-041073

Cited by 11 publications

(9 citation statements)

References 45 publications

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“…Due to Covid‐19, social distancing and lockdown, researchers have come up with innovative ways to adapt face‐to‐face co‐design methodology to an online environment (Beresford et al, 2021b; Kennedy et al, 2021). Digital platforms, such as WhatsApp and Facebook, have been successfully used for co‐design (Brown et al, 2020) and more flexible processes of collaboration have been proposed that respond to the need for low‐contact and social distancing as a result of Covid‐19 (Davis et al, 2021; Langley et al, 2021). Digital co‐design methods can help overcome power imbalances and inequalities (Kennedy et al, 2021), although the type of technology and accessibility are key considerations in digital co‐design methods (Hall and Gaved, 2021).…”

Section: Theoretical Backgroundmentioning

confidence: 99%

Empowering patients to co‐design Covid‐19 responses: the role of online health communities

Martínez

Daleske²,

Léon³

et al. 2021

R & D Management

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Covid-19 has paved the way for major disruptions to conventional healthcare systems accelerating participatory health enabled by interactive virtual environments. The role of the 'patient voice' as a fundamental resource in an effective Covid-19 response has moved centre stage. In this time of extraordinary crisis and health system disruptions, patientcentred models offer opportunities for embedding shared decision-making to improve health outcomes using digital tools. Through an exploratory case study, this paper examines patient action during Covid-19 and how co-design methods can be adapted to an online environment in response to Covid-19 restrictions to improve the Covid-19 patient and family experience of care. Experienced-based co-design was employed to map the care journey of patients with Covid-19 confined at home in Spain -one of the hardest-hit countries in the pandemic -to identify quality improvements. Main touchpoint needs were explored in online co-design workshops leading to improvement projects including the development of a Covid-19 patient online health community (OHC) to deliver patient-centred care during the outbreak. The Covid-19 patient OHC has become an instrument that facilitates Covid-19 patient's recovery, especially psychological resilience. OHC participation has clear potential for empowerment and transformative agency as it enables Covid-19 patients to control the content and flow of the information available to them. This paper offers valuable insights on how co-design can be adapted to an online format to enable more meaningful patient input to healthcare design when faced with uncertainty and ambiguity during health crises.

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Section: Theoretical Backgroundmentioning

confidence: 99%

Empowering patients to co‐design Covid‐19 responses: the role of online health communities

Martínez

Daleske²,

Léon³

et al. 2021

R & D Management

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“…There is evidence supporting the effectiveness of goal-directed interventions to improve motor performance, physical activity and QoL in other pediatric groups (e.g., children with cerebral palsy, muscular dystrophy, or intellectual disability), which may be more conducive to long-term improvements ( 71 – 73 ). There are a small number of published study protocols advocating for the use of goal-directed interventions ( 74 – 76 ).…”

Section: Discussionmentioning

confidence: 99%

Therapeutic exercise interventions in pediatric survivors of brain cancer and other solid tumors: A scoping review

et al. 2022

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BackgroundImproved survival rates for children with solid tumors presents an ongoing challenge of how to maximize quality of survivorship and effectively manage the short- and long-term complications of disease and treatment. To gain an understanding of the extent and nature of research pertaining to therapeutic exercise interventions and identify knowledge gaps, we conducted a scoping review of exercise training studies conducted in pediatric survivors of brain cancer and other solid tumors.MethodA systematic literature search was performed across four electronic databases. Papers were selected for full-text review if they included participants treated for brain cancer or other solid tumors, with at least 50% of participants aged ≤ 21 years, evaluated an exercise intervention ≥2-weeks in duration, and were published in an English, peer-reviewed journal. We included the following quantitative study designs; randomized controlled trials, non-randomized trials, and single-arm pre-test-post-test.ResultsOf the 7,482 citations identified, 17 papers met the inclusion criteria (presenting findings from eleven studies). Two studies were randomized controlled trials, five studies were non-randomized controlled trials, and four studies were a single-arm pre-test post-test design. Average age of participants ranged from 7.3–15.5 years, and time since diagnosis ranged from 3 to 70 months. Five studies included participants with brain tumors exclusively, three studies included other solid tumors, and three studies included a mixed sample (brain and other solid tumors). A wide range of exercise modalities were employed, including cycle ergometry, resistance training, sport, yoga, and active gaming. The length of the exercise program ranged from 3–40 weeks and frequency from 3–11 sessions per week. Exercise session duration ranged from 15–180 min, with most studies reporting 30–90-min sessions. Adherence ranged from 77 to 100%, with none of the studies reporting adverse events. Studies reported improvements in cardiorespiratory fitness, functional strength, physical activity, and quality of life.ConclusionsA small number of mostly low methodological quality studies have examined the effects of therapeutic exercise in pediatric survivors of solid tumors. Although limited, the extant literature supports the feasibility and safety of therapeutic exercise interventions for pediatric survivors of brain cancer and other solid tumors.

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“…While there is strategic imperative to implement co‐design within healthcare for service improvement, co‐design is also increasingly being used in the development of behaviour change interventions for cancer survivors or to support survivors' self‐management of cancer and its consequences (see, e.g., 33 , 34 , 35 , 36 ). Therefore these study findings also have wider applicability for intervention development research It has been recommended that understanding of the concepts of co‐design is an important aspect to avoid not only the implementation of ineffective or inefficient services or service solutions but also mistrust in health and social care services.…”

Section: Discussionmentioning

confidence: 99%

Co‐design to deliver service improvement: What does this mean and how can we do it? A qualitative study with upper gastrointestinal cancer patients and professionals

et al. 2022

Self Cite

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Background: There is strategic objective to incorporate the principles and practice of co-design into routine service development and improvement.Aim: The aim was to explore the concept and feasibility of service co-design with patients and health professionals with regards to the upper gastrointestinal (UGI) cancer care pathway.Methods and Results: Qualitative telephone interviews and face-to-face focus groups in one region of England. Twenty patients completed interviews. Nine patients and ten professionals formed two focus groups. Patients were referred through the urgent (two week) GP referral route and were within six months of receiving their first treatment for an UGI cancer. Professionals were working as service planners and providers of the UGI cancer care pathway. Thematic analysis was undertaken. Six themes emerged: Responsibilities and expectations, Knowledge and understanding, Valuing patient input, Building relationships, Environment for co-design activities, Impact and effectiveness. Based on the themes a checklist has been created to provide practical suggestions for both professionals and patients on approaching co-design for service improvement. Conclusion:This study offers policy and practice partners a clearer understanding of co-design and factors to consider when approaching co-design in real life settings.cancer, co-design, health care professionals, patients, service improvement | INTRODUCTIONTailoring care to patient need and improving patient experience are frequently cited goals of healthcare systems internationally. 1 Co-design of services with professionals, patients and the public is heralded as a mechanism through which person-centred care may be achieved. For example, co-design, that is co-creation of services with stakeholders, is recognised as one of the nine principles required for the successful implementation of the 2015 Cancer Strategy for England. 2 Existing systematic reviews provide a synthesis of evidence on co-design within healthcare. As a result of co-design developments within health care services have been implemented. 3 The implemented changes included: the production of new or improved sources of information for patients; simplifying appointment procedures; extending clinic opening times; improving transport to treatment units; improving access for people with disabilities; and a cultural change within organisations to involve patients. The strategic imperative to embed co-design within service development is supported by

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Using qualitative and co-design methods to inform the development of an intervention to support and improve physical activity in childhood cancer survivors: a study protocol for BEing Active after ChildhOod caNcer (BEACON)

Cited by 11 publications

References 45 publications

Empowering patients to co‐design Covid‐19 responses: the role of online health communities

Empowering patients to co‐design Covid‐19 responses: the role of online health communities

Therapeutic exercise interventions in pediatric survivors of brain cancer and other solid tumors: A scoping review

Co‐design to deliver service improvement: What does this mean and how can we do it? A qualitative study with upper gastrointestinal cancer patients and professionals

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