Search Results (42)

Background: Dementia is a syndrome with a high global prevalence that includes a number of progressive diseases of the brain affecting various cognitive domains such as memory and thinking and the performance of daily activities. It manifests as symptoms which often include significant mood and behaviour changes that are highly varied. Changed moods and behaviours due to dementia may reflect distress and may be stressful for both the person living with dementia and their informal and formal carers. To provide dementia care support specific to mood and behaviour changes, the Behaviours in Dementia Toolkit website (BiDT) was developed using human-centred design principles. The BiDT houses a user-friendly, digital library of over 300 free, practical, and evidence-informed resources to help all care partners better understand and compassionately respond to behaviours in dementia so they can support people with dementia to live well. Objective: (1) To characterize the users that visited the BiDT; and (2) to understand the platform’s early impact on these users. Methods: A multi-method, descriptive study was conducted in the early post-website launch period. Outcomes and measures examined included the following: (1) reach: unique visitors, region, unique visits, return visits, bounce rate; (2) engagement: engaged users, engaged sessions, session duration, pages viewed, engagement rate per webpage, search terms, resources accessed; (3) knowledge change; (4) behaviour change; and (5) website impact: relevance, feasibility, intention to use, improving access and use of dementia guidance, recommend to others. Data was collected using Google Analytics and an electronic survey of website users. Results: From 4 February to 31 March 2024, there were 76,890 unique visitors to the BiDT from 109 countries. Of 76,890 unique visitors to the BiDT during this period, 16,626 were engaged users as defined by Google Analytics (22%) from 80 countries. The highest number of unique engaged users were from Canada (n = 8124) with an engagement rate of 38%. From 5 March 2024 to 31 March 2024, 100 electronic surveys were completed by website users and included in the analysis. Website users indicated that the BiDT validated or increased their dementia care knowledge, beliefs, and activities (82%) and they reported that the website validated their current care approaches or increased their ability to provide care (78%). Further, 77% of respondents indicated that they intend to continue using the BiDT and 81.6% said that they would recommend it to others to review and adopt. Conclusions: The BiDT is a promising tool for sharing practical and evidence-informed information resources to support people experiencing dementia-related mood and behaviour changes. Early evaluation of the website has demonstrated significant reach and engagement with users in Canada and internationally. Survey data also demonstrated high ratings of website relevance, feasibility, intention to use, knowledge change, practice support, and its contribution to dementia guidance. Full article

Background/Objectives: Persistent breathlessness impacts people living with advanced chronic obstructive pulmonary disease (COPD) and carers. Accessible services are limited. This translational pilot study evaluated the feasibility, impacts on patient and carer-reported outcomes, and hospital use of a home-based breathlessness intervention service (BLIS). Methods: People with stable COPD, ≥1 COPD-related hospital admissions in the previous year, and persistent breathlessness participated in a pre–post study. The BLIS program involved home visits/phone contacts by a nurse/physiotherapist (average 8 contacts, 7 weeks). Uptake, retention, and fidelity were recorded prospectively, and participant experience was explored (post-program interviews). Breathing discomfort (Multidimensional Dyspnea Profile A1 scale), threat (Brief Illness Perception Questionnaire), and carer stress/strain (Zarit Burden Interview) were compared pre- and post-program (week 9, 3 and 6 months) using mean difference and 95% confidence intervals (CIs). Hospital use for COPD-related causes in 12 months before/after participation was reported. Results: A total of 16/19 eligible people agreed to participate, and 15/16 completed the program. In participants with COPD (73 [9] years, FEV1%pred 42% [15], mean [SD]; a median of 3 COPD-related hospital admissions in the previous year) and carers (n = 6), BLIS was highly (in 95%) acceptable. Compared to pre-program, breathing discomfort was reduced in week 9 and 6 months; breathlessness threat was reduced in week 9 and 3 months; and carer burden was reduced at 6 months. Compared to the 12 months prior, hospital admissions decreased in the 12 months post-program. Conclusions: Translation of this service to the local setting was feasible, with high program uptake and retention. Post-program improvements in key patient- and carer-reported outcomes and a reduction in public hospital admissions support the implementation of the BLIS program for this cohort in this setting. Full article

The health of adult dogs and cats is affected positively or negatively by their development in utero and throughout postnatal growth. Preventive veterinary care is particularly important when animals are physiologically immature and sensitive to modifiable environmental factors. Veterinary nurses/technicians are often at the forefront of promoting healthy development, reinforcing the work of veterinarians and using their knowledge, experience, and passion to lead initiatives with breeders and pet guardians. This opinion article considers the role of qualified veterinary nurses/technicians in the care of puppies and kittens throughout their developmental life stages—gestation, the suckling period, growth post-weaning to puberty or neutering, and late growth to adulthood. Much of their influence is through the education of pet carers; they provide trustworthy information relevant to the individual pet and focused on the practicalities of best husbandry practices. These include practical advice on recognizing dystocia, neonatal care, weaning, introduction to the new home, the prevention and management of infectious diseases, socialization with conspecifics and humans, habituation to potential environmental stresses, nutrition, oral hygiene, and grooming. The veterinary nurse’s goal is not only to see young pets develop into healthy, well-adjusted adults but also to see pet guardians developing sustainable human–animal bonds. Full article

Around the world, family caregivers are an important source of support for people with intellectual disability (ID) and for those with severe mental disorder (SMD), although the level of support can be influenced by the culture and government healthcare systems in each country. However, there is little evidence about the mental health and coping mechanisms of these caregivers in low-income countries. To address this need, we aimed to elicit whether there are potential links between coping style, mental health, and perceived burden experienced by this group, using a sample from a central Asian upper middle-income country. Methods: We recruited 120 participants, of which 60 were caregivers of people with ID and 60 of people with SMD. All participants were recruited from Ulaanbaatar, the capital city of Mongolia, Central Asia, and were asked to complete of the Depression, Anxiety and Stress Scale (DASS) and the Coping Orientation to Problems Experienced inventory scale (COPE). Multiple regression analyses were used to investigate associations between these measures. Results: We found that DASS scores were significantly higher among the sample of caregivers of individuals with ID than in those of SMD. Mental and behavioral disorders were associated with higher DASS scores in the sample of caregivers of those with SMD. Good coping styles, indicated by higher scores in the COPE, were associated with increased age in caregivers of individuals with ID. Conclusion: Although overall the carers of people with SMD appeared to have better active coping skills and better acceptance of the caring role, they demonstrated comparatively high levels of stress. This study was not registered. Full article

This systematic literature review examines the evidence base on the effectiveness of online programmes on the mental health and well-being of family carers of people with intellectual disabilities. Databases (ERIC, Medline, PsycINFO and CINAHL) were searched for intervention studies that considered online interventions for family carers of people with intellectual disabilities. Data were extracted using standardised data extraction tools. Bias was assessed using the Cochrane risk of bias tool for randomised trials (RoB 2). Screening, extraction and assessment of bias were completed independently by two members of the research team. Given the low number of included studies and different outcomes assessed within them, it was not possible to conduct a meta-analysis; therefore, data are presented narratively. Two studies met the criteria to be included in the review. Both studies utilised a feasibility randomised controlled trial methodology. One study found a significant decrease in parental stress, while the other found a significant increase in psychological well-being. Caution must be taken in drawing firm conclusions, given the small sample sizes and low retention rates in both studies. Online programmes seem to offer potential benefits to family carers of people with intellectual disabilities. However, further investigation is needed to examine these programmes, adopting a collaborative approach with family carers. Full article

Double-Duty Carers (DDCs) refer to people who work in the healthcare industry while also providing unpaid care to relatives, friends, or neighbours. The expectations placed on DDCs is expected to grow, and these employees already experience a high caring burden. As such it is important to understand how best to support their health and wellbeing. This paper explores DDCs’ wellbeing during the COVID-19 pandemic, focusing an understudied factor: their mobility constraints. Following the Mobility of the Care Economy framework and a qualitative research design, it does so through a thematic analysis of 16 semi-structured interviews with female DDCs in Southern Ontario, Canada. Once data saturation was reached, three mobility pathways during the pandemic were identified, all of which negatively affected DDCs wellbeing. First, some COVID-19 policies (e.g., testing requirements) resulted in increased mobility demands and increased spatiotemporal constraints. Second, the closure of institutions that care for dependents (schools, daycares, day centres) resulted in forced reduced mobility, which increased financial stress. Finally, indirect mobility effects were identified: the reduced mobility of other informal carers increased the workload and emotional strain on DDCs. The paper concludes with a discussion of mobility-related policies that could improve DDC wellbeing. Full article

Grandparental care of grandchildren is a prevalent social phenomenon. This study explores the perceptions of health-related quality of life of grandparents caring for their grandchildren. A mixed methods design was developed. In the first phase, participants were interviewed using a baseline questionnaire. The second phase consisted of focus groups with 19 of the 100 participants in the quantitative phase. The scores obtained from the quantitative analysis are in line with the qualitative data; they reflect that grandparent carers who are more involved in the care of their grandchildren have more symptoms of depression and stress and have poorer perceptions of physical health-related quality of life. What may at first appear to be a positive aspect, keeping grandparent carers active, can become negative when it comes to shared care and when the grandparents’ willingness to provide care is abused. Full article

Background and objectives: Population aging increases losses of autonomy, leading to 4.3 million French caregivers for elderly relatives in 2015. This challenging role can lead caregivers to neglect their own health, e.g., one in three carers die before their supported person. There are a lack of data on understanding health conditions and determinant factors in caregivers. The first phase of the 3-year community intervention project “AlimAidants” aimed to conduct a needs analysis to identify prevention priorities related to diet in family caregivers in the Oise region, France. Methods: The in-depth needs analysis collected information in seven categories, e.g., sociodemographic data of the caregiver and supported person, the support provided, impacts on health status and lifestyle, dietary behavior and consumption, and preferences for intervention types. A semi-quantitative self-administered questionnaire was disseminated in paper or digital formats to caregivers through a comprehensive regional network of professionals, associations, and social centers (n = 99) between February and June 2022. Data were analyzed using descriptive statistics and hierarchical cluster analysis with SPSS 28. Results: The response rate was 38,4% (n = 38). Caregivers were mostly women (71%) and were, on average, 59.7 (±12.6) years old. Briefly, 66% provided daily support, performing an average of 4.7 different tasks which impact multiple mental health parameters (61% perceived stress and anxiety, 58% perceived mental fatigue, and 55% perceived physical fatigue). A total of 63% were responsible for relatives’ groceries and 56% were responsible for meal preparation. A total of 84% of caregivers were interested in prevention actions related to diet, e.g., preventing malnutrition (58%) or quick meals (71%). No difference in snacking behavior was determined. Three distinct profiles of caregivers were identified: young carers who balance their role with their personal life, retired and overburdened but highly motivated caregivers, and retired isolated caregivers whose mental health is severely impacted. The preferred formats varied according to the caregiver’s professional situation: digital and offline sessions for the employed and face-to-face workshops for retirees. Discussion: The results show the diversity in health conditions and determinant factors of caregivers, particularly regarding mental health status. This implies a need for personalized prevention actions related to diet which are flexible in format and time, e.g., participative workshops, webinars, videos on social networks, and conferences. Full article

Adults with PKU require life-long management, and ideally, their care should be in a specialised adult metabolic clinic. Their outcomes and co-morbidities have received much attention, but data are lacking on their experience, satisfaction and expectations about the care they receive. This survey reports the experiences and care adults with PKU receive from specialist metabolic clinics in the UK. The online survey developed by the UK NSPKU (National Society for Phenylketonuria), was placed on the NSPKU website from February 2021 to December 2022, and was completed by adults with PKU (≥18 years) or their carers/family members. Sixty-five adult PKU patients and 9 caregivers of adult patients completed the questionnaire (63% female in total). Only 32% of respondents were following a Phe-restricted diet with protein substitute intake as prescribed; the rest were partially adherent or not on dietary restrictions. Nineteen per cent (n = 14/74) had not been reviewed in clinic for two years. Half of the respondents (50%) described their experience in adult clinics as “good”. Half of the patients were unable to contact their dietitians with questions or concerns, and only 24% considered that they received adequate support. Clinic reviews usually included anthropometric (82%) and dietary assessments (64%), discussion on management of PKU in daily life (78%) and a blood test (71%). Eighty-eight per cent reported they had at least one neurocognitive, mental health or behavioural co-morbidity but less than half of the patients reported an assessment on their neurocognitive functioning or mental health issues. Adult male patients appeared to have less detailed clinic review than females. Less than half (44%) of the respondents reported that they performed a blood spot for blood Phe at least monthly, but only 32% considered they had been informed about the risk of high Phe levels in adulthood. Although time, cost and stress related to travelling were barriers to a face-to-face review, more than 40% of patients had concerns about remote appointments. The frequency and extent of monitoring of adults with PKU, attending specialist adult services, were less than those specified by the PKU European guidelines. The care of women of reproductive age is prioritised over men. Adult metabolic health services require further attention, development and resources to provide a high standard and equitable service to patients with PKU. Full article

Accurate assessment of Respiratory Rate (RR) is the most important mechanism in detecting pneumonia in low-resource settings. Pneumonia is a disease with one of the highest mortality rates among young children under five. However, the diagnosis of pneumonia for infants remains challenging, especially in low- and middle-income countries (LMIC). In such situations, RR is most often measured manually with visual inspection. Accurate RR measurement requires the child to remain calm without any stress for a few minutes. The difficulty in achieving this with a sick child in a clinical environment can result in errors and misdiagnosis, even more so when the child is crying and non-cooperating around unfamiliar adults. Therefore, we propose an automated novel RR monitoring device built with textile glove and dry electrodes which can make use of the relaxed posture when the child is resting on the carer’s lap. This portable system is non-invasive and made with affordable instrumentation integrated on customized textile glove. The glove has multi-modal automated RR detection mechanism that simultaneously uses bio-impedance and accelerometer data. This novel textile glove with dry electrodes can easily be worn by a parent/carer and is washable. The real-time display on a mobile app shows the raw data and the RR value, allowing a healthcare professional to monitor the results from afar. The prototype device has been tested on 10 volunteers with age variation of 3 years to 33 years, including male and female. The maximum variation of measured RR with the proposed system is ±2 compared to the traditional manual counting method. It does not create any discomfort for either the child or the carer and can be used up to 60 to 70 sessions/day before recharging. Full article

Spiritual care requires understanding the spiritual experiences of patients and recognizing their resources and needs. Therefore, educators and practitioners should develop their knowledge and understanding in this regard. Spiritual care helps people overcome their anxieties, worries, and suffering; reduces stress; promotes healing; and encourages patients to find inner peace. To provide comprehensive and appropriate care while upholding human/ethical virtues, the spiritual dimension must be a priority. We aim to develop spiritual care competence guidelines for Palliative Care (PC) education and practice in Portugal and Spain. The study detailed in this protocol paper will include three phases. In phase I, the phenomenon will be characterized and divided into two tasks: (1) a concept analysis of “spiritual care competence”; and (2) a systematic review of interventions or strategies used to integrate spiritual care in PC education and practice. Phase II will entail a sequential explanatory approach (online survey and qualitative interviews) to deepen understanding of the perceptions and experiences of educators, practitioners, and patients/family carers regarding spiritual care in PC education and practice and generate ideas for the next steps. Phase III will comprise a multi-phased, consensus-based approach to identify priority areas of need as decided by a group of experts. Results will be used to produce guidelines for integrating spirituality and spiritual care competence within PC education and practice and synthesized in a white book for PC professionals. The value of this improved examination of spiritual care competence will ultimately depend on whether it can inform the development and implementation of tailored educational and PC services. The project will promote the ‘spiritual care’ imperative, helping practitioners and patients/family carers in their preparedness for End-of-Life care, as well as improving curricular practices in this domain. Full article

Aboriginal and Torres Strait Islander Australians suffer higher rates of cancer and poorer outcomes than the wider population. These disparities are exacerbated by rurality and remoteness due to reduced access and limited engagement with health services. This study explored the cancer journeys of Aboriginal patients and carers, and their views on the establishment of an Aboriginal Patient Navigator role within the Western Australian healthcare system to support cancer patients and their families. Sixteen Aboriginal participants were interviewed either face to face, by telephone, or via video conferencing platforms. The interviews were then recorded, transcribed, and thematically analyzed using standard qualitative techniques. Close consultation within the research team enhanced the rigour and robustness of the study findings. Patients and carers identified many gaps in cancer service delivery that made their experiences stressful and unnecessarily complex. Challenges included a lack of stable accommodation, financial burdens, constant travel, being “off-Country”, and miscommunication with health professionals. Key sources of support and strength were the centrality of family and ongoing cultural connectedness. All participants were supportive of an Aboriginal Patient Navigator role that could address shortfalls in cancer service delivery, especially for patients from rural and remote communities. A culturally safe model of support has the potential to increase access, reduce anxiety and improve health outcomes. Full article

Aims: Workplace stress for support workers in UK hospitals (Health Care Assistants; HCAs) is poorly understood. This study explores experiences of HCAs working in a National Health Service in-patient dementia unit after 10 years of national financial austerity (2008–2018). Design: Qualitative evaluation. Methods: 15 HCAs (42%) from a specialist dementia care Unit were interviewed. Interviews were guided by UK Health & Safety Executive published dimensions of work stress. Framework analysis was applied to interview transcriptions, corroborated by a follow-up focus group (6 HCAs). Post hoc interviews with 10 nurses were later introduced to obtain a balanced view of teamwork on the Unit. Results: Health care assistants were altruistic regarding demands of dementia care but otherwise negative of most aspects of their work environment. Staff shortages had increased job demands: workload, poor shift rotas, and excessive reliance on inexperienced agency staff. According to HCAs, job resources of the care team were in significant deficit: nurses in charge were perceived as poor team leaders, had poor interpersonal skills, lacked respect for experienced HCAs, and deemed to be frequently absent from the ward so failing to support carers. HCAs’ lack of decision-latitude exacerbated the situation. In contrast, nurses interviewed did not recognise the teamwork issues raised by HCAs, who were considered obstructive, unsupportive, lacked awareness of nurses’ responsibilities, and of insights how understaffing meant excessive administration and time required to support patients’ relatives. Such dissonant inter-group views caused considerable friction and exacerbated the work pressure. Conclusion: Study outcomes spotlighted impacts of socioeconomic issues for HCAs. Staff shortage, exacerbated by financial austerity measures (pre-COVID pandemic), increased job demands for HCAs but their psychosocial job resources were in serious deficit, so putting them at risk of burnout. Inter-group relations are key for a collaborative ethos, and are amenable to interventions. Such difficulties should not be allowed to fester. Full article

Background: The number of people living with dementia (PwD) worldwide is expected to double every 20 years. Many continue living at home, receiving support from family caregivers who may experience significant stress, simultaneously to that of the PwD. Meaningful and effective home-based interventions to support PwD and their caregivers are needed. The development of a theory- and practice-driven online home-based music intervention (MI) is delivered by credentialed music therapists, nested within the HOMESIDE RCT trial. Methods: Dyads including the PwD and their family carer are randomised to MI, reading (RI) or standard care (SC). MI aims to support health wellbeing and quality of life by training caregivers to intentionally use music (singing, instrument playing, movement/dancing, and music listening) with their family member (PwD) in daily routines. MI is underpinned by cognitive, relational, social, and psychological theories of mechanisms of change. Results: Preliminary sub-cohort results analyses show MI can be delivered and is accepted well by participants and music-therapist interventionists across five countries. Conclusions: The specialist skills of a music therapist through MI enable carers to access music when music therapists are not present, to meet carer and PwD needs. Music therapists embrace this changing professional role, observing therapeutic change for members of the dyads. Full article

The role and responsibilities of next-of-kin carers are significant, filling several years of their lives and causing them to experience a burden of care. This study was conducted to investigate the burden of next-of-kin carers for dementia sufferers in Slovakia. Data were compiled via the Relatives’ Stress Scale (RSS) screening instrument through a survey of 112 primary next-of-kin carers and analysed using the statistical tests of descriptive statistics, means, scores and significance differences (Wilcoxon test). This is one of the few scales which provides: (a) specific measures of caregiver stress, and (b) is standardised for a population of informal carers in the home environment. The profiles of Slovak next-of-kin carers were identified with statistically significant characteristics (gender, age of carers). The study identified a high level of caregiving stress (82.15%), and selected factors were found to be significant in all burden dimensions: emotional stress (p = 0.001), social stress (p = 0.003), and negative feelings (p = 0.002). The results emphasise the need for coordination of healthcare and social services, possibly by expanding the network of social support groups, operating a counselling hotline/chat, and introducing national educational programmes for the next-of-kin carers of dementia sufferers. The results are also a source of reference for the umbrella organisation ‘the Slovak Alzheimer’s Society’ to access when implementing changes at a national level. Full article