The development of PAT‐HD: A co‐designed tool to promote physical activity in people with Huntington’s disease

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.     

Service‐user experiences of an integrated psychological intervention for depression or anxiety and tobacco smoking in improving access to psychological therapies services: A qualitative investigation into mechanisms of change in quitting smoking

IntroductionHigh smoking prevalence leads to increased morbidity and mortality in individuals with depression/anxiety. Integrated interventions targeting both smoking and mood have been found to be more effective than those targeting smoking alone, but the mechanisms of change of these interventions have not been investigated. This qualitative study aimed to understand participants'' experiences of the mechanisms underlying change in smoking behaviour following an integrated cognitive behavioural technique‐based intervention for smoking cessation and depression/anxiety.MethodsThis study was embedded within an ongoing randomized‐controlled acceptability and feasibility trial (http://www.isrctn.com/ISRCTN99531779). Semistructured interviews were conducted with 15 IAPT service users. Data were analysed using thematic analysis. During the interviews, participants were asked open‐ended questions about their quitting experience and perception of how the intervention aided their behaviour change.ResultsFive themes were identified. Acquiring an increased awareness of smoking patterns: participants described an increased understanding of how smoking was contributing towards their mental health difficulty. Developing individualized strategies: participants described acquiring ‘a couple of tricks up your sleeve’ that were helpful in making smoking cessation feel more ‘manageable’. Practitioner style as ‘supportive but not lecture‐y’: participants expressed how important the therapeutic alliance was in helping change their smoking behaviour. Importance of regular sessions: participants expressed the importance of ‘having someone that''s checking in on you’. Having the opportunity to access the intervention at ‘the right time’: participants described the intervention as the ‘push’ that they ‘needed’.ConclusionsParticipants identified key factors towards smoking behaviour change. Perceived increased awareness of how smoking negatively impacted participants'' mental health, and the opportunity to be offered smoking cessation treatment in a ‘non‐judgemental’, ‘supportive’ environment, with regular sessions and individualized strategies contributed to successful smoking cessation outcomes. If similar results are found in more diverse samples, these aspects should be embedded within integrated interventions for smoking cessation and depression/anxiety.Patient or Public ContributionPersons with lived experience of depression, anxiety and tobacco addiction contributed towards the design of the interview schedule, participant information sheets and the debriefing process. This was to ensure that interview questions were relevant, nonjudgemental and acceptable for those who did not manage to quit smoking.     

Experiences,perceptions and expectations of health services amongst marginalized populations in urban Australia: A meta‐ethnographic review of the literature

BackgroundPoor health outcomes amongst marginalized groups result in part from health inequities related to social and structural determinants of health. Marginalized people report higher incidences of comorbidities, chronic disease and adverse health behaviours than their nondisadvantaged peers. The objective of this review is to examine marginalized Australians'' experiences of and access to community‐based primary health services in urban locations.MethodsA systematic search incorporating related MeSH terms and synonyms pertaining to marginalized Australian populations and their health‐seeking was conducted across seven databases. We included qualitative studies that reported experiences of health‐seeking within community‐based primary health care in metropolitan Australia. Participant populations experiencing marginalization due to social stigma and isolation, early‐life disadvantage, poor health and/or financial hardship were included. A meta‐ethnographic framework was used to synthesize themes across selected studies and researcher triangulation was employed to develop higher‐order themes.ResultsSearch results revealed 26 studies included for critical appraisal and synthesis. Seven higher‐order themes were developed describing experiences of health service engagement amongst marginalized groups: (1) Understanding the patient within the context of family and community, (2) Health and cultural beliefs influence health‐seeking, (3) Lack of information and poor cultural competence limit utilization of services, (4) Motivation for treatment influences health service engagement, (5) Accessing services, a spectrum of experience—from discrimination to validation, (6) Navigating a complex system in a complex society, (7) Preferences for health care and expectations for systemic change.ConclusionMarginalized Australians experience health disadvantage across micro, meso and macro levels of health system navigation and commonalities in health‐seeking were identified across each of the distinct marginalized groups in our analysis. This review outlines important areas of consideration for health care provision and policy development essential to helping address health inequities for a diversity of marginalized populations.Patient or Public ContributionWhilst patient voices were reported across all studies included within this review, no further patient or public contribution applies to this study.     

Patient satisfaction with prescribed medicines in community health services in China: A cross‐sectional survey 6 years after the implementation of the national essential medicines policy

The National essential medicines policy (NEMP) is promoted by the World Health Organization for affordable medicines that can meet the basic needs of communities. Patient acceptance is essential for achieving the policy goals of the NEMP. This study aimed to assess patient satisfaction with prescribed medicines in community health services under the NEMP context in China. A stratified random sampling strategy was adopted to select 1,037 participants in 40 community health centres from four provinces in China. Patient satisfaction was rated on a five‐point Likert scale (from 1 = “very dissatisfied” to 5 = “very satisfied”) covering four domains: availability, affordability, effectiveness and safety. The results showed that the participants expressed a moderate degree of satisfaction, with a rating in the range of 66–82 out of a total of 100. Older people, those covered by insurance and those with a lower level of education tended to have higher ratings. While eastern (wealthy) residents were more likely to be concerned with “effectiveness,” western (poor) residents were more likely to be concerned with “affordability.” Awareness of the NEMP was negatively associated with patient satisfaction after control for other factors.     

Enabling ‘citizen voice’ in the English health and social care system: A national survey of the organizational structures,relationships and impacts of local Healthwatch in England

BackgroundLocal Healthwatch have been operating since 2013 as ‘consumer champions’ in health and social care in England. There is little evidence about how they operate and the daily practices through which they seek to represent citizen views and influence others.ObjectiveTo explore (a) the current organizational arrangements, relationships and impact of local Healthwatch in England, and (b) to what extent do these vary across local Healthwatch organizations.DesignAn online survey of all 150 local Healthwatch in England between December 2018 and January 2019. The survey comprised 47 questions and used a combination of closed‐ and open‐response questions.ResultsWe received responses from 96 local Healthwatch (68% response rate). Most local Healthwatch reported that they are ‘independent’ organizations that only do Healthwatch‐related work (58.3%) and are funded through a contract (79.2%). Budget cuts have affected four‐fifths of local Healthwatch (79.3%) since 2013. Three‐quarters (74%) of local Healthwatch currently receive funding external to that provided by their local authority for their Healthwatch functions. Most Healthwatch engage with only one CCG (56.3%), one mental health trust (82.3%) and one community health trust (62.5%), though 59.4% engage with more than one hospital trust. Healthwatch respondents overwhelmingly reported impacts that were local in nature.ConclusionsGeographical and historical factors, the quality and quantity of their relationships with stakeholders, and different funding arrangements all contribute to high variability in the structure and activities of local Healthwatch and to shaping the nature of their work and impact across England.