BackgroundEnablers for people with Parkinson's disease (PD) participating in aquatic physiotherapy have been identified, and exercise improves health‐related quality of life (HRQoL) but it is unclear whether all enablers and barriers for aquatic physiotherapy specific to the PD population have been explored.ObjectiveTo describe HRQoL in people with PD who have undertaken aquatic physiotherapy, and explore their perceptions and attitudes regarding the programme.MethodsTwenty‐one participants who participated in a pilot trial on aquatic physiotherapy were included. Participants completed a survey regarding their experiences. The Parkinson's Disease Questionnaire‐39 (PDQ‐39) and Personal Well‐being Index‐Adult (PWI) were used to quantify HRQoL, whilst focus groups were conducted to explore their perceptions and attitudes. Descriptive statistics were used to summarize HRQoL scores. Focus group data were analysed using the deductive coding method.ResultsMost participants felt that the aquatic programme was worthwhile (n = 20/21, 95%). However, they had poor overall well‐being (mean 41.6, SD 13.5) and HRQoL (mean 31.0, SD 13.2) as measured by the PWI and PDQ‐39. Several barriers to aquatic therapy including safety when getting dressed, fatigue and transport were identified although many enablers were also identified, including an improvement in function, less falls and group socialization.ConclusionsAquatic physiotherapy was well‐accepted. Participants felt their function improved and felt safe in the water. HRQoL is lower in individuals with PD when compared to Australian norms; thus, interventions to optimize HRQoL need to be explored further.Patient or Public ContributionPatients participated in the aquatic intervention, survey and focus groups.

BackgroundHuntington's disease (HD) is a genetic condition resulting in movement, behavioural and cognitive impairments. People with HD have low levels of physical activity which may be compounded by insufficient support from health‐care professionals.ObjectiveTo evaluate the initial acceptability of a co‐designed tool used within a HD clinic to promote physical activity.DesignCo‐design of a physical activity tool; acceptability evaluation.Setting and participantsCo‐design included people with HD and health‐care professionals. Acceptability was evaluated in a HD clinic in the UK.Main variables studiedA physical activity tool was co‐designed and used within a HD clinic.Main outcome measureAcceptability as assessed by semi‐structured interviews with members of the HD clinic.ResultsForty people visited the HD clinic; 19 were given physical activity advice. Themes around who, where and how promotion of physical activity could take place were identified; concepts of benefits and barriers were threads through each theme.DiscussionWe describe for the first time the co‐design of a HD specific physical activity tool. Our associated acceptability study emphasizes the importance of individualized planning of physical activities in complex neurodegenerative conditions. Perceived barriers were time and lack of knowledge of local resources.ConclusionsA simple tool can support conversations about physical activity with people with HD and is an aid to individualized goal setting. Exploring the use of PAT‐HD within a community setting and development of support systems for health‐care professionals and support workers who are in regular contact with people with HD is required.

BackgroundDuring the 2020 COVID‐19 pandemic, one of the key components of many countries’ strategies to reduce the spread of the virus is contact tracing.ObjectiveTo explore public attitudes to a COVID‐19 contact tracing app in the United Kingdom.SettingOnline video‐conferencing.Participants27 participants, UK residents aged 18 years and older.MethodsQualitative study consisting of six focus groups carried out between 1st‐12th May, 2020 (39‐50 days into the UK ‘lockdown’).ResultsParticipants were divided as to whether or not they felt they would use the app. Analysis revealed five themes: (1) lack of information and misconceptions surrounding COVID‐19 contact tracing apps; (2) concerns over privacy; (3) concerns over stigma; (4)concerns over uptake; and (5) contact tracing as the ‘greater good’. Concerns over privacy, uptake and stigma were particularly significant amongst those stated they will not be using the app, and the view that the app is for the ‘greater good’ was particularly significant amongst those who stated they will be using the app. One of the most common misconceptions about the app was that it could allow users to specifically identify and map COVID‐19 cases amongst their contacts and in their vicinity.ConclusionsOur participants were torn over whether digital contact tracing is a good idea or not, and views were heavily influenced by moral reasoning.Patient or Public ContributionNo patients were involved in this study. The public were not involved in the development of the research questions, research design or outcome measures. A pilot focus group with participants not included in the present paper was used to help test and refine the focus group questions. Summary results were disseminated via email to participants prior to publication for feedback and comment.

BackgroundThe Assessing outcomes of enhanced Chronic disease Care through patient Education and a value‐baSed formulary Study (ACCESS) is a randomized controlled trial evaluating two interventions targeting barriers to care among those at high risk of cardiovascular disease: copayment elimination for cardioprotective medications, and a tailored self‐management support programme. We designed a process evaluation to better understand participant perspectives on the interventions.DesignWe used a qualitative descriptive study design, collecting patient and pharmacist feedback via individual semi‐structured telephone interviews and in‐person focus groups. Data were analysed inductively using thematic analysis.ResultsFifty‐three patients (39 interviews and 14 in two focus groups) and 20 pharmacists participated. Copayment elimination provided quality of life benefits: minimizing the need to 'cut‐back', allowing 'peace of mind' and providing emotional support. Health‐related benefits included: improving adherence to covered medications, and helping to afford non‐covered goods. The only criticism was that not all medications and testing supplies were covered. Patients reported that the educational materials provided helpful information, acted as a reminder, improved confidence, improved adherence to medication, and helped initiate conversations with providers about indicated medication. Some participants felt that the educational materials were repetitive, overly medication‐focused and not tailored enough. Pharmacists felt that their patients benefitted from both interventions, which improved patient adherence and communication with their patients.ConclusionThe success of interventions intended to change behaviour is largely dependent upon participant's feelings that the intervention is helpful. This process evaluation provided insights into participants' perceptions on these interventions. Reception of both was largely positive with a few criticisms noted.

BackgroundTimeliness is viewed as a key feature of health‐care quality. Internationally, this is challenging. In England, cancer waiting time targets are currently not being met. For example, between 2015 and 2018 only 71% of patients with upper gastrointestinal (UGI) cancer started treatment within the recommended 62 days of referral.ObjectiveWe explored patients’ experiences to identify areas for service improvement.DesignSemi‐structured interviews were conducted.Setting and participantsTwenty patients who were referred through the urgent (two‐week) GP referral route and were within six months of receiving first treatment were recruited.Data analysisData from the interviews were analysed thematically.ResultsFour themes were developed: organization of care; diagnosis; support; and views and expectations of the NHS. Patients described cross‐cutting issues such as complex and varied pathways and uncertainty about what would happen next. They felt daunted by the intensity and speed of investigations. They were presented with a recommended course of action rather than options and had little involvement in decision making. They were grateful for care, reluctant to complain and resigned to the status quo.Discussion and conclusionsIn order to meet patient needs, the NHS needs to improve communication and streamline pathways. Future cancer pathways also need to be designed to support shared decision making, be truly person‐centred and informed by patient experience.

BackgroundPatient enablement is a concept developed to measure quality in primary health care. The comparative analysis of patient enablement in an international context is lacking.ObjectiveTo explain variation in patient enablement between patients, general practitioners (GPs) and countries. To find independent variables associated with enablement.DesignWe constructed multi‐level logistic regression models encompassing variables from patient, GP and country levels. The proportions of explained variances at each level and odds ratios for independent variables were calculated.Setting and ParticipantsA total of 7210 GPs and 58 930 patients in 31 countries were recruited through the Quality and Costs of Primary Care in Europe (QUALICOPC) study framework. In addition, data from the Primary Health Care Activity Monitor for Europe (PHAMEU) study and Hofstede's national cultural dimensions were combined with QUALICOPC data.ResultsIn the final model, 50.6% of the country variance and 18.4% of the practice variance could be explained. Cultural dimensions explained a major part of the variation between countries. Several patient‐level and only a few practice‐level variables showed statistically significant associations with patient enablement. Structural elements of the relevant health‐care system showed no associations. From the 20 study hypotheses, eight were supported and four were partly supported.Discussion and ConclusionsThere are large differences in patient enablement between GPs and countries. Patient characteristics and patients’ perceptions of consultation seem to have the strongest associations with patient enablement. When comparing patient‐reported measures as an indicator of health‐care system performance, researchers should be aware of the influence of cultural elements.

Latinos in the United States represent a disproportionate burden of illness and disease and face barriers to accessing health care and related resources. Culturally tailored, evidence‐based interventions hold promise in addressing many of these challenges. Yet, ensuring patient voice is vital in the successful development and implementation of such interventions. Thus, this paper examines the application of analytic hierarchy process (AHP) to inform the augmentation and implementation of an evidence‐based chronic disease self‐management programme for underserved Latinos living with both minor depression and chronic illness. The process of AHP allows for direct input from the individuals that would utilize such a programme, including afflicted individuals, their family members and the health educators/promotores that would be responsible for implementation. Specifically, 45 participants, including 15 individuals with chronic disease, 15 family members/caregivers and 15 promotores, partook in the Stakeholder Values Questionnaire, which elicited preferences and values regarding major goals, processes and content for the intervention. AHP was employed to analyse pairwise comparison ratings and to determine differences and similarities across stakeholder groups. This analytical technique allowed for the adaptation of the EBI to stakeholders' specific priorities and preferences and facilitated complex decision‐making. Findings not only shed light on similarities and differences between stakeholder groups, but also the magnitude of these priorities and preferences and allowed the intervention to be driven by the participants, themselves. Applying AHP was a unique opportunity to optimize the decision‐making process to inform cultural adaptation of an EBI while considering multiple viewpoints systematically.

ObjectiveTo explore how patients and relatives experience and talk together about their life with inflammatory arthritis.DesignQualitative research.SettingA convenience sample was used. Participants were recruited in seven rheumatology departments in France.ParticipantsPatients with rheumatoid arthritis or spondyloarthritis, agreeing to participate in the study with a relative, age at least 18 years.Data collection and analysisTwo psychologists conducted face‐to‐face interviews with 20 patient‐relative dyads (40 individuals). A thematic analysis followed a general inductive approach.ResultsSaturation was reached after interviews with 20 dyads. The analysis revealed four main themes: (a) disease ‘lived’ together: a new role for the relative (providing help in physical tasks, emotional support, acting as a driving force, having a role in medical care) and communication around the disease (not focusing on the disease); (b) impact of the disease on the relationship; (c) social impact of the disease on the dyad (social isolation); (d) difficulties and needs of the relative (need to better know the disease).ConclusionThis study has highlighted the importance of recognizing the role of the relative in the management of inflammatory arthritis disease, especially when medical decisions are shared with professionals. A joint approach to treatment is a basis for coping with the disease. This approach supposes (a) discussions about relatives’ new roles to clarify them, (b) patients’ and relatives’ communication skills and (c) a good understanding of each other, which can be improved by providing information on the disease and coping strategies for both the patient and the relative.