E-bibliotherapy for improving the psychological well-being of informal caregivers of people with dementia: a randomized controlled trial protocol.

BACKGROUND: Providing informal care for individuals with dementia is frequently a challenging and demanding experience that can have detrimental effects on the psychological well-being of caregivers. Regrettably, community-based caregiver services often prove inadequate, highlighting the necessity for innovative approaches to support caregivers. AIM: To test the efficacy of e-bibliotherapy in improving the psychological well-being of informal caregivers of people with dementia. METHOD: The study is divided into two phases. In phase 1, the research team will co-design the e-bibliotherapy app with caregivers. In phase 2, a randomized controlled trial will be conducted among 192 informal caregivers of people with dementia in Hong Kong. Caregivers will be randomly assigned to either the e-bibliotherapy group or the control group using simple randomization. Outcome measures will encompass caregivers' psychological well-being, caregiving appraisal, mental health, saliva cortisol levels as an indicator of stress, and health-related quality of life for caregivers. Data will be collected at baseline, immediately post intervention, and 3 months and 6 months post intervention. General linear mixed model will be employed to analyze intervention effects. Qualitative interviews will be undertaken to explore caregiver experiences within this study and evaluate intervention acceptability using conventional content analysis methods. DISCUSSION: This study represents a pioneering effort in utilizing e-bibliotherapy to enhance the psychological well-being of informal caregivers of individuals with dementia, addressing the existing gap in caregiver services and facilitating knowledge dissemination within the community. TRIAL REGISTRATION: The trial has been registered on ClinicalTrial.gov (Ref: NCT05927805).

Collaborating across sectors to provide early intervention for Aboriginal and Torres Strait Islander children with disability and their families: a qualitative study of provider perspectives.

Aboriginal and Torres Strait Islander children experience a higher prevalence of disability than other Australian children. Early intervention from across the health, education, and social service sectors is vital for improving outcomes, but families face lack of coordination between services. This study aimed to inform improvements in service access for families of urban-dwelling Aboriginal children with disability through exploring providers' perceptions of factors that influenced working together across sectors. Semi-structured interviews were conducted. Data analysis was informed by the general inductive approach and the Collaborative Practice to Enhance Patient Care Outcomes framework. Twenty-four providers participated. Interprofessional collaborative practice was influenced by interdependent interactional and organizational factors. Interactional factors fit within one of two dimensions: the ability of providers to share common goals and vision within a complex cross-sector service landscape, and influence of interpersonal relationships on their sense of belonging working in a cross-cultural space. Organizational factors also fit within one of two dimensions: the influence of governance in relation to its role in coordination and unlocking the strength of schools as service settings, and the need to formalize processes for effective interprofessional communication. Interprofessional collaborative practice was managed within the context of systemic factors relating to policy and funding. These findings demonstrate the complex interplay of factors related to the cross-sector involvement of providers in early intervention service provision. Consideration of these factors is required to facilitate collaborative cross-sector responses to improve service access for Aboriginal families.Abbreviations: WHO: world health organization; ACCHS: aboriginal community controlled health service; GP: general practitioner; NDIS: national disability insurance scheme.

Older Patients' Perspectives of Online Health Approaches in Chronic Obstructive Pulmonary Disease.

Background: Chronic obstructive pulmonary disease (COPD) is a complex, chronic condition. Patients commonly have limited access to face-to-face support due to decreased mobility, symptom burden, and availability of services. Online health care approaches provide the potential for increased access to self-management education and support. This study sought to understand older patients with COPD's perspectives of online approaches to health care. Materials and Methods: Participants older than 65 years were recruited from a respiratory service at an academic medical center. Qualitative, focus groups were used and recorded, transcribed verbatim, and analyzed using thematic analysis to identify key and repeated emergent themes. Results: Focus groups were undertaken between January and May 2014. Thematic analysis resulted in five overall themes: (1) concern over risks in the online environment; (2) multimedia and technology use as part of everyday life; (3) online resources as an opportunity for revision of forgotten knowledge; (5) potential for facilitation of decision-making support across geographical and physical barriers; and (4) perceived benefits of online peer support for people with COPD. Conclusions: Overall, these older participants with COPD had positive views of online health information, but did raise the need for guidance to ensure valid and reliable online sources. The capacity for online sources to increase access to decision support and up-to-date information was viewed positively, as was the ability to interact with peers who had similar experiences. Telecommunication tools and approaches are already being utilized in health care interactions. Further research is required into the most appropriate, feasible, and sustainable online health approaches to support patients with chronic illnesses such as COPD.

Negotiating health and chronic illness in Filipino-Australians: a qualitative study with implications for health promotion.

OBJECTIVE: In spite of the healthy immigrant effect, the prevalence of lifestyle-related chronic diseases among migrants is reported to approximate that of the host country with longer duration of stay. For example, higher rates of chronic diseases such as Type 2 diabetes and hypertension have been observed among Filipino migrants and these have been linked to acculturation. The aim of this study was to explore the experiences of Filipino-Australian migrants in managing their chronic health conditions in a Western host country. DESIGN: This paper reports on qualitative findings of a mixed methods study that used an explanatory sequential design. Nine focus group discussions were undertaken with 58 Filipino-Australian migrants with chronic disease. Thematic analysis was undertaken using a five-stage general purpose thematic framework ensuring that themes closely identified key participants' experiences . RESULTS: Findings revealed that health benefits provided by the health system in Australia were considered advantageous. However, a lack of social and instrumental support compounded isolation and disempowerment, limiting self-management strategies for chronic illnesses. Cultural beliefs and practices influenced their knowledge, attitude to and management of chronic disease, which health service providers overlooked because of perceived acculturation and English language skills. Overall this study has clearly identified recognition of cultural beliefs, language needs and support as three core needs of Filipino-Australian migrants with the elderly the most vulnerable. CONCLUSION: This paper highlights that self-management of chronic disease among elderly Filipino immigrants may be adversely affected by host language difficulties, a lack of social support and cultural issues, impacting on access to services, health-seeking behaviours and participation in health promotion initiatives. Language, culture-specific health interventions and resources and enhancing social support are likely important strategies in promoting chronic disease self-management among the elderly. These interventions have the potential to empower and encourage individuals to take control and better manage their chronic disease.

Interacting With Providers: An Intersectional Exploration of the Experiences of Carers of Aboriginal Children With a Disability.

Intersectionality has potential to create new ways to describe disparities and craft meaningful solutions. This study aimed to explore Aboriginal carers' experiences of interactions with health, social, and education providers in accessing services and support for their child. Carers of Aboriginal children with a disability were recruited from an Australian metropolitan Aboriginal community-controlled health service. In-depth, semistructured interviews were conducted with 19 female carers. Intersectionality was applied as an analytical framework due to the inherent power differentials for Aboriginal Australians and carers for people with a disability. Marginalization and a lack of empowerment were evident in the experiences of interactions with providers due to cultural stereotypes and racism, lack of cultural awareness and sensitivity, and poverty and homelessness. Community-led models of care can help overcome the intersectional effects of these identities and forms of oppression in carers' interactions with providers and enhance access to care.

Experiences and needs of carers of Aboriginal children with a disability: a qualitative study.

BACKGROUND: Australian parents/carers of a person with a disability experience higher rates of depression, more financial stress, and are twice as likely to be in poor physical health than the general population. Aboriginal and Torres Strait Islander peoples experience worse health, social and economic outcomes than other Australians, and those with a disability face 'double disadvantage'. This study aimed to better understand the experiences and needs of parents/carers/families of Aboriginal children with a disability. METHODS: Semi-structured in-depth interviews were conducted with parents or primary carers of Aboriginal children aged zero-eight with disability. Interviews were analysed using thematic analysis. RESULTS: Nineteen women (sixteen mothers and three grandmothers) were interviewed. More than half were lone carers (without a partner or spouse). Participants described their experiences, including challenges and facilitators, to providing and accessing care, impacts on their health and wellbeing, and associated economic and non-economic costs of caregiving. Financial strain and social isolation was particularly prominent for lone carers. CONCLUSIONS: Tailoring services to the needs of carers of Aboriginal children with a disability means supporting kinship caregiving, facilitating engagement with other Aboriginal families, and streamlining services and systems to mitigate costs. The experiences described by our participants depict an intersection of race, socio-economic status, gender, disability, and caregiving. Services and funding initiatives should incorporate such intersecting determinants in planning and delivery of holistic care.

A framework for an asset-informed approach to service mapping.

BACKGROUND: Asset-informed approaches are increasingly emphasised in public health, but transferring this approach to planning health services requires prospective systematic methods. Asset-informed approaches to service-mapping have started to develop, but there are no standardised guidelines. These methods are becoming of particular interest, as nurses engage in population health activities. AIM: To identify methods of asset-informed mapping for addressing health problems and develop a framework to support the methodological rigour of service-mapping. DISCUSSION: The authors undertook an integrative literature review using a systematic approach and narrative synthesis. Ten articles met the inclusion criteria. Reported methods included the formation of a core team to drive the process, as well as varying detail about methods of collecting data and forming maps. Challenges and solutions included the effectiveness of the core team depending on having a designated leader, frequent meetings and previous partnerships, using community 'cultural brokers', and determining aims and scope. CONCLUSION: Results of the review can be used to modify existing generic resources for asset-informed mapping to their application in health services. Four main stages seem especially applicable and important: defining the parameters of the service-mapping process; identifying services; mapping services; and consultation and implementation. IMPLICATIONS FOR PRACTICE: The shift towards asset-informed approaches in community and public health is an important step in realising the potential of existing assets in communities to influence health outcomes. The framework offered in this paper is intended to assist in developing an evidence base, by promoting the systematic and rigorous reporting of methods used in asset-informed approaches to service-mapping.

Systems to identify potentially inappropriate prescribing in people with advanced dementia: a systematic review.

BACKGROUND: Systems for identifying potentially inappropriate medications in older adults are not immediately transferrable to advanced dementia, where the management goal is palliation. The aim of the systematic review was to identify and synthesise published systems and make recommendations for identifying potentially inappropriate prescribing in advanced dementia. METHODS: Studies were included if published in a peer-reviewed English language journal and concerned with identifying the appropriateness or otherwise of medications in advanced dementia or dementia and palliative care. The quality of each study was rated using the STrengthening the Reporting of OBservational studies in Epidemiology (STROBE) checklist. Synthesis was narrative due to heterogeneity among designs and measures. Medline (OVID), CINAHL, the Cochrane Database of Systematic Reviews (2005 - August 2014) and AMED were searched in October 2014. Reference lists of relevant reviews and included articles were searched manually. RESULTS: Eight studies were included, all of which were scored a high quality using the STROBE checklist. Five studies used the same system developed by the Palliative Excellence in Alzheimer Care Efforts (PEACE) Program. One study used number of medications as an index, and two studies surveyed health professionals' opinions on appropriateness of specific medications in different clinical scenarios. CONCLUSIONS: Future research is needed to develop and validate systems with clinical utility for improving safety and quality of prescribing in advanced dementia. Systems should account for individual clinical context and distinguish between deprescribing and initiation of medications.

Navigating the journey of Aboriginal childhood disability: a qualitative study of carers' interface with services.

BACKGROUND: The disadvantage experienced by Aboriginal and Torres Strait Islander children with a disability is well recognized. The long term consequences of failing to address disability on health, education and employment underlies the importance of early intervention. Caregivers experience a disproportionate burden and have challenges accessing services. The aim of this study was to describe the carer journey of accessing support and services. METHODS: We conducted in-depth semi-structured interviews with nineteen parents and carers of Aboriginal children aged 0-8 years. The children were patients at a child developmental clinic at a metropolitan area Aboriginal health service in Eastern Australia. Interpretive phenomenological analysis was applied to transcribed verbatim accounts. RESULTS: Four themes were developed using the 'journey' metaphor to describe the carer pathway of accessing support and services at the community, service and policy levels. Themes included 1) the need for increased signage within communities via community education, information and awareness, 2) wrong way signs, roundabouts and roadblocks encountered when accessing services, 3) alternate routes can facilitate the journey, and 4) incompatibility of inflexible bureaucratic road rules and lived realities. CONCLUSIONS: The challenges of caring for a child with a disability are indisputable and these can be compounded for people experiencing socio-economic disadvantage and marginalisation. Overcoming challenges to service access faced by carers of Aboriginal children with a disability will require investment in community, services and policy to tailor culturally appropriate models of care.

Validation of the professional practice environment scale in nurse educators in hospitals.

AIM: To report an assessment of the psychometric properties of the Professional Practice Environment (PPE) scale in a sample of Australian nurse educators in acute care hospitals. BACKGROUND: Although nurse educators are important in an enabling work environment, there has been no reported exploration of their satisfaction with work in acute care hospitals. DISCUSSION: The factor structure and internal consistency of the PPE scale were consistent with Erickson's eight-factor model of the items, indicating the appropriateness of the scale as an assessment tool to measure the PPE of nurse educators. CONCLUSION: The PPE scale is useful for monitoring the work environment of nurse educators in clinical practice and the environmental effects influencing their recruitment, retention and job satisfaction. IMPLICATIONS FOR PRACTICE: This work may inform the development of integrated professional practice environments where the professional practice and workplace satisfaction of nurse educators are optimised, influencing safe, quality patient care.

Strategies to enhance recruitment of rural-dwelling older people into community-based trials.

AIM: To describe strategies that can enhance the recruitment of rural-dwelling older people into clinical trials. BACKGROUND: Recruitment to studies can be time-consuming and challenging. Moreover, there are challenges associated with recruiting older people, particularly those living in rural areas. Nevertheless, an adequate sample size is crucial to the validity of randomised controlled trials (RCTs). DATA SOURCES: The authors draw on the literature and their personal experiences, to present a range of flexible and inclusive strategies that have been successfully used to recruit older people into clinical trials. REVIEW METHODS: This paper describes attempts to improve recruitment of rural-dwelling, older Thai people to a clinical trial. DISCUSSION: To attract potential participants, researchers should consider minimising the burden of their study and maximising its benefits or convenience for participants. Three factors that may influence participation rates are: personal factors of participants, researchers' personal attributes, and protocol factors. In addition, three important strategies contribute to improving recruitment: understanding the culture of the research setting, identifying the 'gatekeepers' in the setting and building trust with stakeholders. CONCLUSION: Even though the study covered did not recruit a large number of participants, these understandings were crucial and enabled recruitment of a sufficient number of participants in a reasonable timeframe. IMPLICATIONS FOR PRACTICE/RESEARCH: These strategies may be of use in rural settings and with different communities including urban communities.

Cross-sector collaborations in Aboriginal and Torres Strait Islander childhood disability: a systematic integrative review and theory-based synthesis.

INTRODUCTION: Aboriginal and Torres Strait Islander children in Australia experience a higher prevalence of disability and socio-economic disadvantage than other Australian children. Early intervention is vital for improved health outcomes, but complex and fragmented service provision impedes access. There have been international and national policy shifts towards inter-sector collaborative responses to disability, but more needs to be known about how collaboration works in practice. METHODS: A systematic integrative literature review using a narrative synthesis of peer-reviewed and grey literature was undertaken to describe components of inter- and intra-sector collaborations among services to Aboriginal and Torres Strait Islander children with a disability and their families. The findings were synthesized using the conceptual model of the ecological framework. RESULTS: Thirteen articles published in a peer-reviewed journal and 18 articles from the grey literature met inclusion criteria. Important factors in inter- and intra-sector collaborations identified included: structure of government departments and agencies, and policies at the macro- (government) system level; communication, financial and human resources, and service delivery setting at the exo- (organizational) system level; and relationships and inter- and intra-professional learning at the meso- (provider) system level. CONCLUSIONS: The policy shift towards inter-sector collaborative approaches represents an opportunity for the health, education and social service sectors and their providers to work collaboratively in innovative ways to improve service access for Aboriginal and Torres Strait Islander children with a disability and their families. The findings of this review depict a national snapshot of collaboration, but as each community is unique, further research into collaboration within local contexts is required to ensure collaborative solutions to improve service access are responsive to local needs and sustainable.

Factors influencing the psychosocial well-being of people with dementia and their informal caregivers: A systematic review of dyadic studies.

Individuals with dementia and their informal caregivers face significant challenges to their psychosocial well-being, necessitating immediate attention. In spite of the prevalence of this problem, there is limited data regarding the factors that influence the dyadic psychosocial well-being and potential actor-partner influencing mechanisms. Therefore, this review was conducted to synthesise the factors associated with the psychosocial well-being of people with dementia and their informal caregivers. MEDLINE via EBSCOhost, CINAHL, PsycINFO, Embase and Scopus were systematically searched to identify relevant studies. Quantitative, qualitative or mixed-method studies examining the factors influencing dyadic psychosocial well-being outcomes were included. The quality of included studies was assessed using Joanna Briggs Institute Critical Appraisal checklists. A narrative synthesis approach was employed for data analysis. A total of 3217 records were yield, out of which 26 studies were included in the analysis. Quality of life emerged as the most extensively investigated dyadic psychosocial well-being outcome, followed by depression. The interrelation between the quality of life for people with dementia and caregivers was observed, where individual members' quality of life was influenced by their own, partner and dyadic factors. However, there is a dearth of research exploring the mechanisms through which one member's factors exert influence on both their own and partner's quality of life within the dyad. This gap also exists for other psychosocial well-being outcomes, such as depression and anxiety. Further research is warranted to elucidate the underlying mechanisms through which dyadic members influence their own and their partner's psychosocial well-being.

Implantable cardiac defibrillators and end-of-life care--time for reflection, deliberation and debate?

Heart failure (HF) is a common condition associated with high rates of morbidity and mortality. Implantable cardiac defibrillators (ICDs) are an important management strategy in HF management and decrease mortality for both primary and secondary prevention. An emerging body of literature identifies the challenges of managing ICDs at the end of life. This report discusses a critical incident experienced by a HF team in a referral centre and outlines the issues to be considered in advancing discussion and debate of managing ICDs at the end of life. Engaging in debate, discussion and consensus guidelines is likely to be crucial in minimising distress and burden for clinicians, patients and their families alike.

A qualitative study of experiences of asylum-seeker women of living in detention centres: confinement versus safety.

BACKGROUND: Iranian asylum seekers are amongst the highest number of boat arrivals to Australia who have been subject to compulsory detention. Women face more health-threatening problems rather than men in detention, yet, remain understudied in health research. This study aimed to inform healthcare providers about the experiences of living in immigration detentions, which might affect asylum seekers' mental health. METHOD: A qualitative study using semi-structured interviews and thematic analysis. RESULTS: 17 participants shared their experiences: Living in a prison-like environment was a punishment for their boat arrival and violated their privacy and dignity. In contrast, a sense of security, free access to healthcare services, and building social networks were positive aspects of short-term detention. CONCLUSION: To prevent further trauma, living conditions in detention must be conducive to promoting coping and adjustment. The length of detention should be minimised and limited to preparing asylum seekers for facing a new socio-cultural environment.

'It's quite a complex trail for families now' - Provider understanding of access to services for Aboriginal children with a disability.

Aboriginal and Torres Strait Islander children experience a higher prevalence of disability and socio-economic disadvantage than other Australian children. Early intervention from across the health, education and social service sectors is vital for improving outcomes, but families face a number of barriers to service access which impede intervention. This study aimed to inform ways to improve access to services for families of urban-dwelling Aboriginal children with a range of disabilities. A qualitative approach was taken to explore providers' perceptions of factors that either impeded or enabled families' access to services. In this research, the term 'provider' refers to individuals who are employed in a range of sectors to deliver a service involving assessment or management of an individual with a disability. Semi-structured in-depth interviews with 24 providers were conducted. Data analysis was informed by the general inductive approach and then applied deductively to the candidacy framework to generate additional insights. Candidacy focuses on how potential users access the services they need and acknowledges the joint negotiation between families and providers regarding such access. Our research identified that candidacy was influenced by the historical legacy of colonisation and its ongoing socio-cultural impact on Aboriginal people, as well as funding and current policy directives. Enacting culturally sensitive and meaningful engagement to better understand families' needs and preferences for support, as well as support for providers to develop their understanding of family contexts, will contribute to facilitating service access for Aboriginal children with a disability.

Improved adherence in older patients with hypertension: An observational study of a community-based intervention.

AIMS AND OBJECTIVES: This study sought to assess the effect of a community-based intervention influencing adherence status at baseline, 1, 3 and 6 months, and to evaluate the impact that a community-based intervention and socio-economic factors have on adherence. BACKGROUND: Although high-quality treatment and modern hypertension clinical practice guidelines have been developed worldwide, the outcomes of patients with hypertension in Thailand are not optimal. Implementing a person-centred and integrated health services model to improve hypertension management, such as a community-based intervention, is challenging for healthcare providers in Thailand. DESIGN: An observational study of a community-based intervention. METHODS: The study comprised residents in 17 villages in one province of Thailand. A sample of 156 participants was allocated into the intervention and the control groups. Inclusion criteria were people aged 60 years or older diagnosed with hypertension. Exclusion criteria included the latest record of extreme hypertension and having a documented history of cognitive impairment. The intervention group received the 4-week community-based intervention programme. Multiple linear regression was applied to predict the adherence status at each phase. Multiple logistic regression was then implemented to predict influencing factors between the groups. RESULTS: Patients who received the intervention had significantly lower adherence scores (reflecting a higher level of adherence) at 3 and 6 months after intervention by 1.66 and 1.45 times, respectively, when adjusting for other variables. After 6 months, the intervention was associated with a significant improvement in adherence when adjusting for other variables. CONCLUSION: This study provides evidence to support the use of community-based interventions as an effective adjunct to hospital-based care of hypertension patients in Thailand. IMPLICATIONS FOR PRACTICE: Understanding factors between health outcomes and social determinants of health is crucial for informing the development of culturally appropriate interventions.

Effect of Tai Chi Chuan on balance in women with multiple sclerosis.

OBJECTIVE: To examine the effect of Tai Chi Chuan on balance in women with multiple sclerosis in Iran. DESIGN: 36 women with multiple sclerosis who were members of the Iranian Multiple Sclerosis Society participated in this study. 18 participants were allocated to the intervention group and 18 allocated to the control group. The intervention consisted of Yang style Tai Chi Chuan exercise sessions twice a week for 12 weeks. MAIN OUTCOME MEASURES: This study used a demographic questionnaire and the Berg Balance Scale (BBS) to collect data. RESULTS: After 12 weeks, the mean score of the BBS in the intervention group demonstrated a statistically significant improvement in comparison with baseline status. CONCLUSIONS: The results suggest that Tai Chi Chuan could be used as a safe complementary intervention to increase balance in patients with multiple sclerosis.