An embedded qualitative study of the experiences of people with dementia, their caregivers and volunteer older adults who participated in the CREST resilience-building psychosocial intervention.

BACKGROUND: A novel Complex REsilience-building psychoSocial intervenTion (CREST) targeted at people with dementia, their informal carers, general practitioners and the wider community with the aim of increasing resilience and strengthening the personal attributes or external assets of people with dementia living at home, in the community, was developed. It included three components: cognitive stimulation therapy (CST), physical exercise and dementia education. A non-randomised feasibility study was conducted of the CREST intervention, the aim of which was to inform the design of a future randomised controlled trial. This article presents the findings from the qualitative component of the CREST intervention feasibility study, describing the experience of the people with dementia and their caregivers who participated and the volunteer older adults who supported the intervention. METHODS: A descriptive qualitative research approach using semi-structured interviews was undertaken. Key stakeholders (people with dementia (n = 9), their caregivers (n = 9) and the volunteer older adults from the physical exercise component (n = 9)) were interviewed about the intervention and the perceived impact of their participation. RESULTS: The social aspect of the CREST intervention proved to be important for all three groups. Attendance remained high throughout the intervention. The people with dementia spoke positively about their participation in the CST and exercise components of the CREST intervention. The caregivers liked receiving coping strategies focused on how to communicate better with the person they cared for and how to better manage their own self-care and they liked the group element of the programme. The volunteer older adults supported the people with dementia in taking part in the exercise component, motivating them to do the exercises and helping with social interaction within the group. The volunteers gained exposure to the illness and as a result understood more about dementia and felt better equipped to communicate and deal with people with dementia. CONCLUSION: Participation in the CREST intervention produced a positive impact on all three groups. The social element of the intervention was noted by everybody and was regarded as being beneficial. Qualitative insights emphasised the value of embedding qualitative research within feasibility studies to inform future intervention design. Further research should focus on conducting a full-scale randomised controlled trial to evaluate CREST's effectiveness and explore its application to individuals with more advanced dementia. TRIAL REGISTRATION: ISRCTN25294519.

Challenges of using a Fitbit smart wearable among people with dementia.

OBJECTIVES: Limited research on using smart wearables such as Fitbit devices among people with dementia has shown favourable outcomes. The aim of this study was to explore the acceptability and feasibility of using a Fitbit Charge 3 among people with dementia, living in the community, who took part in the physical exercise component of the Comprehensive REsilience-building psychoSocial intervenTion pilot study. METHODS: A mixed methods study was conducted; Quantitative data relating to wear rates for the Fitbit were recorded and qualitative data were collected by group and individual interviews with the people with dementia and their caregiver about their experience of wearing/using the Fitbit in the study. RESULTS: Nine people with dementia and their caregiver completed the intervention. Only one participant wore the Fitbit consistently. Supporting set-up and use of the devices was time consuming and caregiver involvement was essential for day-to-day support: none of the people with dementia owned a smartphone. Few of them engaged with the Fitbit features, primarily only using it to check the time and only a minority wanted to keep the device beyond the intervention. DISCUSSION: When designing a study using smart wearables such as a Fitbit among people with dementia, consideration should be given to the following: the possible burden on caregivers supporting the use of the device; a lack of familiarity with this technology in the target population; dealing with missing data, and the involvement of the researcher in setting up and supporting use of the device.

Reporting health communication activities for the prevention and control of communicable diseases in Europe.

Health communication is part of the public health response to the significant continuing threat of communicable diseases in Europe. However, the nature and extent of health communication activities in the context of Europe aimed at the prevention and control of communicable diseases is currently unknown. This severely restricts capacity development as neither strengths nor gaps in knowledge and practice are evident and therefore cannot be addressed. This article reports on the initial phase of a research project aimed at supporting the optimal use and development of health communication activities in the European Union and the European Economic Area. The study used a mixed-methods design-an e-survey and telephone interviews-with participants from 30 countries to identify activities, followed by an opportunistic group interview with 15 key stakeholders to identify perceived needs of public health bodies in relation to identified gaps. Results indicate that health communication activities are not clearly delineated in national public health structures and policies, there is an emphasis on crisis communication, and limited evaluation of activities and education and training opportunities for health communication are required. The facilitation of partnership working with a forum for knowledge exchange between Member States would enhance efficacious health communication.

Psychosomatic symptoms among schoolchildren.

UNLABELLED: Psychosomatic symptoms are commonly reported among young people. The potential burden of such symptoms on both young people and health services is substantial. Research from several countries indicates that psychosomatic symptoms tend to co-exist rather than occur singularly and could impose limitations on daily living and participation in school life. OBJECTIVES: The aim of this paper was to determine the weekly prevalence of somatic (headache, stomach-ache, dizziness, back ache) and psychological (feeling low, irritability/bad temper, difficulty sleeping, and nervousness) symptoms among schoolchildren in Ireland; and to explore, the influence of family material affluence on reported symptoms. STUDY GROUP: 11-17 year-old school going children. METHODS: Data are presented from the 2006 Irish Health Behaviour in the School-aged Children survey, comprising a nationally representative sample of schoolchildren aged 11-17 years (n = 9969). Sampling units were classes within schools with a response rate of 63% of schools and 83% of students. RESULTS: Irritability/bad temper (43.0%) and headache (26.0%) were the most commonly reported psychological and somatic symptoms among both boys and girls. Symptom prevalence was higher among girls (range 17.8% - 43.8%) than boys (range 10.7% - 42.3%) and was higher among older children of both genders, except for stomachache in boys. Girls from less affluent backgrounds were significantly more likely to report frequent symptoms (55.5% vs. 50.7%). CONCLUSIONS: Multiple symptoms were inversely related to family material affluence for girls. The factors associated with psychosomatic symptoms and the consequences for schoolchildren require further investigation.

The feasibility of a Comprehensive Resilience-building psychosocial Intervention (CREST) for people with dementia in the community: protocol for a non-randomised feasibility study.

BACKGROUND: A dementia diagnosis can prevent people from participating in society, leading to a further decline in cognitive, social and physical health. However, it may be possible for people with dementia to continue to live meaningful lives and continue to participate actively in society if a supportive psychosocial environment exists. Resilience theory, which focuses on strengthening personal attributes and external assets in the face of serious challenges, may provide a scaffold on which an inclusive multifaceted psychosocial supportive environment can be built. This protocol paper describes a study to determine the feasibility of conducting a multifaceted complex resilience building psychosocial intervention for people with dementia and their caregivers living in the community. METHODS: This is a non-randomised feasibility study. Ten participants with dementia and their primary caregivers living in the community will be recruited and receive the CREST intervention. The intervention provides (a) a 7-week cognitive stimulation programme followed by an 8-week physical exercise programme for people with dementia and (b) a 6-week educational programme for caregivers. Members of the wider community will be invited to a dementia awareness programme and GP practices to a dementia training workshop. Trained professionals will deliver all intervention components. Outcomes will assess the feasibility and acceptability of all study processes. The feasibility and acceptability of a range of outcomes to be collected in a future definitive trial, including economic measurements, will also be explored. Finally, social marketing will be used to map a route toward stigma change in dementia for use in a subsequent trial. Quantitative feasibility outcome assessments will be completed at baseline and after completion of the 15-week intervention while qualitative data will be collected at recruitment, baseline, during and post-intervention delivery. CONCLUSION: This feasibility study will provide evidence regarding the feasibility and acceptability of a comprehensive multifaceted psychosocial intervention programme for people with dementia and their caregivers (CREST). The results will be used to inform the development and implementation of a subsequent RCT, should the findings support feasibility. TRIAL REGISTRATION: ISRCTN25294519 Retrospectively registered 07.10.2019.

Implementation and Long-Term Outcomes of Organisational Health Literacy Interventions in Ireland and The Netherlands: A Longitudinal Mixed-Methods Study.

Organisational Health Literacy (OHL)-interventions are needed to overcome health inequality. OHL-interventions have successfully identified communication barriers at the organisational level, but evidence is limited on the extent to which this leads to sustainable organisational change. This study aims to assess the implementation fidelity, moderators (barriers and facilitators), and long-term impact of OHL-interventions in hospitals in Ireland and The Netherlands. We used a longitudinal mixed-methods approach to assess two similar OHL-interventions in one Irish and three Dutch hospitals. The OHL-interventions concerned the improvement of navigation and implementation of health literacy-friendly communication throughout organisations. Participants were 24 hospital employees and 40 older adults who use hospital services. At six, eight, and eighteen months, we assessed the level of implementation, barriers and facilitators, and impact through questionnaires and in-depth semi-structured interviews. After older adults and professionals had identified a number of communication problems, we found that professionals had successfully implemented OHL-interventions to promote navigation and comprehensible communication. Limited resources and variation in organisational structures and procedures were perceived as barriers to implementation. The participation of service users, leadership support, and a stepwise implementation of interventions were perceived to facilitate implementation. In the long term, the OHL-interventions led to system-wide improvements, as shown by better embedding of health literacy policies, enhanced patient engagement, provision of plain language training and comprehensible information. Findings were similar for the two countries. Embedded OHL-interventions resulted in sustainable and system-wide health literacy changes in all four hospitals. Following implementation, OHL-interventions have the potential to promote health equity and empowerment among health service users.

Developing and pilot testing a comprehensive health literacy communication training for health professionals in three European countries.

OBJECTIVE: Skills to address different health literacy problems are lacking among health professionals. We sought to develop and pilot test a comprehensive health literacy communication training for various health professionals in Ireland, Italy and the Netherlands. METHODS: Thirty health professionals participated in the study. A literature review focused on evidence-informed training-components. Focus group discussions (FGDs) explored perspectives from seventeen professionals on a prototype-program, and feedback from thirteen professionals following pilot-training. Pre-post questionnaires assessed self-rated health literacy communication skills. RESULTS: The literature review yielded five training-components to address functional, interactive and critical health literacy: health literacy education, gathering and providing information, shared decision-making, enabling self-management, and supporting behaviour change. In FGDs, professionals endorsed the prototype-program and reported that the pilot-training increased knowledge and patient-centred communication skills in addressing health literacy, as shown by self-rated pre-post questionnaires. CONCLUSION: A comprehensive training for health professionals in three European countries enhances perceived skills to address functional, interactive and critical health literacy. PRACTICE IMPLICATIONS: This training has potential for wider application in education and practice in Europe.