Long-Term Maintenance Strategies after Pulmonary Rehabilitation: Perspectives of People with Chronic Respiratory Diseases, Informal Carers, and Healthcare Professionals

Pulmonary rehabilitation (PR) is an effective intervention for people with chronic respiratory diseases (CRD); however, its effects fade after 6–12 months. Community-based strategies might be valuable to sustain PR benefits, but this has been little explored. People with CRD, informal carers, and healthcare professionals (HCPs) were recruited from pulmonology appointments of two local hospitals, two primary care centres, and one community institutional practice and through snowballing technique. Focus groups were conducted using a semi-structured guide. Data were thematically analysed. Twenty-nine people with CRD (24% female, median 69 years), 5 informal carers (100% female, median 69 years), and 16 HCPs (75% female, median 36 years) were included. Three themes were identified: “Maintaining an independent and active lifestyle” which revealed common strategies adopted by people with “intrinsic motivation and professional and peer support” as key elements to maintain benefits, and that “access to information and partnerships with city councils’ physical activities” were necessary future steps to sustain active lifestyles. This study suggests that motivation, and professional and peer support are key elements to maintaining the benefits of PR in people with CRD, and that different physical activity options (independent or group activities) considering peoples’ preferences, should be available through partnerships with the community, namely city councils.

Known in the nursing home: development and evaluation of a digital person-centered artistic photo-activity intervention to promote social interaction between residents with dementia, and their formal and informal carers

Background To address the lack of social interaction and meaningful activities for persons with dementia (PWD) in nursing homes an artistic Photo-Activity was designed. The present study aims to develop a digital version of the Photo-Activity and to investigate its implementation and impact on nursing home residents with advanced dementia, and their (in)formal carers. Methods First, within a user-participatory design, a digital-app version of the Photo-Activity will be developed and pilot-tested, in co-creation with (in)formal carers and PWD. Next, the feasibility and effectiveness of the Photo-Activity versus a control activity will be explored in a randomized controlled trial with nursing home residents (N=90), and their (in)formal carers. Residents will be offered the Photo-Activity or the control activity by (in)formal carers during one month. Measurements will be conducted by independent assessors at baseline (T0), after one month (T1) and at follow up, two weeks after T1 (T2). Qualitative and quantitative methods will be used to investigate the effects of the intervention on mood, social interaction and quality of life of the PWD, sense of competence of informal carers, empathy and personal attitude of the formal carers, and quality of the relationship between the PWD, and their (in)formal carers. In addition, a process evaluation will be carried out by means of semi-structured interviews with the participating residents and (in)formal carers. Finally, an implementation package based on the process evaluation will be developed, allowing the scaling up of the intervention to other care institutions. Discussion Results of the trial will be available for dissemination by Spring 2023. The digital Photo-Activity is expected to promote meaningful connections between the resident with dementia, and their (in)formal carers through the facilitation of person-centered conversations. Trial registration Netherlands Trial Register: NL9219; registered (21 January 2021); NTR (trialregister.nl)

Observed effects of the COVID-19 pandemic on the life satisfaction, psychological distress and loneliness of Australian carers and non-carers

Using six waves of longitudinal data, we investigate wellbeing, psychological distress and loneliness differences between informal carers and non-carers in the context of COVID-19-related policy changes in Australia. Wellbeing levels fluctuated along with the virus case numbers. Free childcare temporarily alleviated the disparity between carers and non-carers, but by its cessation, carers, in particular, reported lower wellbeing and higher psychological distress. Wage subsidies and income supports had opposing effects for carers’ and non-carers’ mental health but decreased the loneliness of both groups. Victorians, living in the state where the second wave of infections in Australia was concentrated, experienced worse outcomes than other Australians.

Patient, carer and healthcare professional perspectives on increasing calorie intake in Amyotrophic Lateral Sclerosis

Objectives Research suggests that higher Body Mass Index is associated with improved survival in people with Amyotrophic Lateral Sclerosis (pwALS). Yet, understanding of the barriers and enablers to increasing calorie intake is limited. This study sought to explore these issues from the perspective of pwALS, informal carers, and healthcare professionals. Methods Interviews with 18 pwALS and 16 informal carers, and focus groups with 51 healthcare professionals. Data were analysed using template analysis and mapped to the COM-B model and Theoretical Domains Framework (TDF). Results All three COM-B components (Capability, Opportunity and Motivation) are important to achieving high calorie diets in pwALS. Eleven TDF domains were identified: Physical skills (ALS symptoms); Knowledge (about high calorie diets and healthy eating); Memory, attention, and decision processes (reflecting cognitive difficulties); Environmental context/resources (availability of informal and formal carers); Social influences (social aspects of eating); Beliefs about consequences (healthy eating vs. high calorie diets); Identity (interest in health lifestyles); Goals (sense of control); Reinforcement (eating habits); and Optimism and Emotion (low mood, poor appetite). Discussion To promote high calorie diets for pwALS, greater clarity around the rationale and content of recommended diets is needed. Interventions should be tailored to patient symptoms, preferences, motivations, and opportunities.

SUPPORT OF INFORMAL CARERS FOR PEOPLE AFTER A STROKE WITH CROWDSOURCING AND NATURAL LANGUAGE PROCESSING

For a long time, both professionals and the lay public showed little interest in informal carers. Yet these people deals with multiple and common issues in their everyday lives. As the population is aging we can observe a change of this attitude. And thanks to the advances in computer science, we can offer them some effective assistance and support by providing necessary information and connecting them with both professional and lay public community. In this work we describe a project called “Research and development of support networks and information systems for informal carers for persons after stroke” producing an information system visible to public as a web portal. It does not provide just simple a set of information but using means of artificial intelligence, text document classification and crowdsourcing further improving its accuracy, it also provides means of effective visualization and navigation over the content made by most by the community itself and personalized on a level of informal carer’s phase of the care-taking timeline. In can be beneficial for informal carers as it allows to find a content specific to their current situation. This work describes our approach to classification of text documents and its improvement through crowdsourcing. Its goal is to test text documents classifier based on documents similarity measured by N-grams method and to design evaluation and crowdsourcing-based classification improvement mechanism. Interface for crowdsourcing was created using CMS WordPress. In addition to data collection, the purpose of interface is to evaluate classification accuracy, which leads to extension of classifier test data set, thus the classification is more successful.

Exploration of Caregiver Experiences of Conservatively Managed End-Stage Kidney Disease to Inform Development of a Psychosocial Intervention: The ACORN Study Protocol

Background: End-stage kidney disease (ESKD) is an overwhelming illness that impacts not just patients, but also their informal carers. Patients who opt for conservative management rather than dialysis experience difficult symptoms and the psychosocial consequences of their condition. Informal carers of patients who choose conservative management can also experience high levels of psychosocial burden, yet there is little guidance on how best to support informal carers, and no evidence on psychosocial interventions to address unmet needs. Aim: The aim of this study is to explore the experiences and unmet needs of informal carers of patients with ESKD receiving conservative management in order to inform the development of a psychosocial intervention. Methods: This qualitative study will consist of three stages: (I) semi-structured interviews with informal carers in England and Northern Ireland, (II) focus groups with healthcare professionals and informal carers, and (III) national workshops to refine the components of a psychosocial intervention. Discussion: Informal carers of patients with ESKD who are receiving conservative management experience a high psychosocial burden, but there is limited evidence on how best to provide support, particularly as the patient nears the end of life. To our knowledge this study will be the first to address this gap by exploring the experiences and unmet needs of informal carers, with the aim of informing the development of a psychosocial intervention to support the health and wellbeing of informal carers.

The Experiences of People with Dementia and Informal Carers Related to the Closure of Social and Medical Services in Poland during the COVID-19 Pandemic—A Qualitative Study

Older people with dementia are particularly at risk of COVID-19; however, relatively little is known about the indirect impact of the pandemic on the lives of those living with, and/or caring for someone with, dementia. The aim of this study was to investigate the experiences of people with dementia and informal carers during the closure of available social and medical services in Poland during the COVID-19 pandemic. A qualitative thematic analysis of semi-structured interviews with people with dementia (n = 5) and informal carers (n = 21) was performed between June and August 2020 after the first wave of COVID-19 in Poland. Three overarching themes were identified: (1) care re-organization; (2) psychological responses; (3) emerging needs. The factor underlying all these elements was reliance on other people. Social support and engagement are vital to the ongoing health and well-being of people living with dementia and their informal carers. Services need to be strengthened to provide ongoing provision to those living with dementia to reach pre-pandemic levels, if not better. Within the post-pandemic environment, people with dementia and their informal carers need reassurance that they can rely on external institutional and social support able to meet their needs.

A Qualitative 5-Country Comparison of the Perceived Impacts of COVID-19 on People Living with Dementia and Unpaid Carers

Background Emerging evidence shows an impact of the COVID-19 pandemic on people living with dementia and informal carers, without any evidence-based global comparison to date. The aim of this international study was to explore and compare the perceived impact of COVID-19 and associated public health restrictions on the lives of people living with dementia and informal carers and access to dementia care across five countries. Methods Informal carers and people living with dementia who were residing in the community in the UK, Australia, Italy, India, and Poland were interviewed remotely between April and December 2020. Participants were asked about their experiences of the pandemic and how restrictions have impacted on their lives and care. Transcripts were analysed by researchers in each country using inductive thematic analysis. Results Fifteen people living with dementia and 111 informal carers participated across the five countries. Four themes emerged: (1) Limited access and support; (2) Technology and issues accessing remote support; (3) Emotional impact; and (4) Decline of cognitive and physical health reported by carers. Whilst variations were noted, the pandemic has indirectly affected people with dementia and carers across all five countries. The pandemic removed access to social support services and thus increased carer burden. Remote services were not always provided and were very limited in benefit and usability for those with dementia. As a result, carers appeared to notice reduced cognitive and physical health in people with dementia. Particular differences were noted between India and Poland vs. the UK, Italy, and Australia, with less impact on care provision in the former due to limited uptake of support services pre-pandemic based on cultural settings. Conclusions The pandemic has amplified dementia as a global public health problem, and people affected by the condition need support to better access vital support services to live well.