Lyn Phillipson

Why carers of people with dementia do not utilise out-of-home respite services

While many people with dementia require institutional care, having a co-resident carer improves the likelihood that people can live at home. Although caregiving can have positive aspects, carers still report a high need for respite. Despite this need, the use of respite services for carers of people with dementia is often low. This article investigates carer beliefs regarding out-of-home respite services and why some carers do not utilise them. A total of 152/294 (51.7%) carers of community-dwelling people with dementia (NSW, Australia) who were sent a survey completed it (November 2009-January 2010). Despite reporting unmet need for both services, 44.2% of those surveyed were not utilising day respite and 60.2% were not utilising residential respite programmes. Binary logistic regression models were used to examine factors associated with non-use using the Theory of Planned Behaviour within an expanded Andersen Behavioural Model on a final sample of 113 (due to missing data). The model explained 66.9% of the variation for day centres, and 42% for residential respite services. Beliefs that service use would result in negative outcomes for the care recipient were strongly associated with non-use of both day care [OR 13.11; 95% CI (3.75, 45.89)] and residential respite care [OR 6.13; 95% CI (2.02, 18.70)] and were more strongly associated with service non-use than other predisposing, impeding and need variables. For some carers who used services despite negative outcome beliefs, the benefits of respite service use may also be diminished. To improve use of out-of-home respite services in this vulnerable group, service beliefs should be addressed through service development and promotion that emphasises benefits for both carer and care recipients. Future research utilising behavioural service models may also be improved via the inclusion of service beliefs in the study of health and social service use.

Use of day centers for respite by help-seeking caregivers of individuals with dementia.

Addressing the use of respite services by caregivers of individuals with dementia is important to improving social support among this vulnerable group. This article uses theory to conceptualize the behavioral, normative, and control beliefs that caregivers of individuals with dementia associate with the use of out-of-home day centers for respite. Interviews and focus groups with 36 caregivers were conducted to explore the beliefs of both users and nonusers of these services. While service users held positive beliefs, nonusers perceived negative outcomes for the care recipient with dementia or faced barriers associated with the recipients behavioral or physical needs. To address negative perceptions, nurses may need to promote the benefits of day centers for both caregivers and care recipients. However, improvements in program activities and environments, staff development, and caregiver support are also required to address negative beliefs and meet the needs of those currently not accessing care.

“Between the Devil and the Deep Blue Sea”: The Beliefs of Caregivers of People With Dementia Regarding the Use of In-Home Respite Services

This article details results from qualitative research with caregivers in regard to the beliefs they associate with the use of in-home respite services. Outcomes are perceived by caregivers in relation to care recipient personal safety and the avoidance of negative consequences through the provision of supervision in the caregivers absence. Use of in-home services challenges normative beliefs for some caregivers, particularly for spousal caregivers who feel it is their role to provide assistance that is needed in the home. Likewise, perceived inflexibility and the inability of in-home services to provide responsive and personalized care make the use of in-home services difficult and may inform control beliefs. Implications are discussed in relation to community care pathways and the promotion and development of in-home respite services to better target caregiver beliefs and respond to caregiver perceived needs.

Dementia attitudes and help-seeking intentions: an investigation of responses to two scenarios of an experience of the early signs of dementia.

Objectives: To investigate associations between dementia-attitudes and help-seeking intentions. Method: An online survey of 611 Australian adults (45–60 years) assessed dementia-related attitudes and help-seeking intentions in response to two scenarios of an experience of early dementia: for themselves (Scenario 1); and for a significant other (proxy help-seeking) (Scenario 2). Logistic regression models examined the relationship between four dementia-related attitudes (labelled Personal Avoidance, Fear of Labelling, Fear of Discrimination and Person Centredness) and help-seeking intentions. Results: Most participants indicated they would seek help from a general practitioner (GP) for themselves (82.2%) or for a proxy (78.7%) in response to the scenarios. Whilst only 7.2% indicated they would seek help from no-one, 21.3% would delay seeking help. In response to Scenario 1, Personal Avoidance and Fear of Labelling were associated with intentions to delay help-seeking. Fear of both Labelling and Discrimination were associated with intentions to seek help from no-one. In response to Scenario 2, Personal Avoidance was associated with intentions to delay proxy help-seeking and a reduced likelihood of seeking help by phone or and with Fear of Discrimination, via a GP. Fear of Labelling was also associated with an intention to delay proxy help-seeking. Conclusion: Efforts to improve help-seeking for dementia should address attitudes relating to stigma including negative labelling and a desire for the avoidance of people with dementia. Fears relating to discrimination indicate a need to build public confidence regarding the capacity of the health and workforce sectors to support people with dementia ethically and appropriately.

Correlates of dementia attitudes in a sample of middle-aged Australian adults

To examine sociodemographic factors associated with attitudes regarding dementia.

Cancer beliefs in ethnic minority populations: a review and meta-synthesis of qualitative studies.

People from ethnic minorities often experience poorer cancer outcomes, possibly due to later presentation to healthcare and later diagnosis. We aimed to identify common cancer beliefs in minority populations in developed countries, which can affect symptom appraisal and help seeking for symptomatic cancer. Our systematic review found 15 relevant qualitative studies, located in the United Kingdom (six), United States (five), Australia (two) and Canada (two) of African, African-American, Asian, Arabic, Hispanic and Latino minority groups. We conducted a meta-synthesis that found specific emotional reactions to cancer, knowledge and beliefs and interactions with healthcare services as contributing factors in help seeking for a cancer diagnosis. These findings may be useful to inform the development of interventions to facilitate cancer diagnosis in minority populations.

Effective Communication Only Part of the Strategy Needed to Promote Help-Seeking of Young People with Mental Health Problems

Formative research was undertaken in the Illawarra region of New South Wales (south of Sydney, Australia) to identify local communication strategies to influence the help-seeking behavior of young people in relation to a new youth-focused general practice (or physician) led mental health service. Research with the target market (12–25years) revealed the need for a local campaign to address the stigma associated with the use of mental health services and the need to emphasize the central role of the general practitioner or physician to the service. The results also indicated that any overarching campaign should be complemented by segment-specific strategies which tailor not only communication variables and channels to reach different market segments, but also consider varying aspects of the product or service to reach a broad cross-section of the target group.

Applying Knowledge Translation Concepts and Strategies in Dementia Care Education for Health Professionals: Recommendations From a Narrative Literature Review

Introduction: Dementia education programs are being developed for health professionals, but with limited guidance about “what works” in design and content to promote best practice in dementia care. Knowledge translation (KT) is a conceptual framework for putting evidence to work in health care. This narrative literature review examined the question: What does the field KT offer, conceptually and practically, for education of health professionals in dementia care? It seeks to identify the types of strategies currently used within education to facilitate effective KT for the wide range of health professionals who may be involved in the care of people with dementia, plus explore enablers and barriers to KT in this context. Methods: From 76 articles identified in academic databases and manual bibliographic searching, 22 met review criteria. Results: The literature synthesis indicated four hallmarks of successful KT-oriented dementia education for health professionals: (1) multimodal delivery, (2) tailored approaches, (3) relationship building, and (4) organizational support for change in the work setting. Participatory action frameworks were also favored, based on interactive knowledge exchange (eg, blended learning) rather than passive unidirectional approaches alone (eg, lectures). Discussion: The following six principles are proposed for educating health professionals in dementia care: (1) Match the education strategy to the KT goal and learner preferences; (2) Use integrated multimodal learning strategies and provide opportunities for multiple learning exposures plus feedback; (3) Build relationships to bridge the research–practice gap; (4) Use a simple compelling message with formats and technologies relevant to the audience; (5) Provide incentives to achieve KT goals; and (6) Plan to change the workplace, not just the individual health professional.

‘I don’t want to cause any trouble’: the attitudes of hospital patients towards patient empowerment strategies to reduce healthcare-acquired infections

Background: Patients have, traditionally, been assumed to be the passive party in the healthcare-associated infections equation, with relatively little research focused on the patients’ perspective. This study aimed to explore the attitudes of hospital patients towards patient empowerment as one of the key components of patient engagement. Methods: Semi-structured interviews were undertaken with surgical patients from a major public hospital in Sydney, Australia. Findings: While participants acknowledged that patients could play a role in preventing infections while in hospital, that role was largely associated with maintaining their own personal hygiene. No reference was made to patients interacting with staff members. Some participants said that they would feel comfortable and happy to engage with staff, while others voiced concerns. Some about not wanting to ‘cause trouble or start fires’ and therefore would not tell staff members to perform hand hygiene. Some participants articulated a fear that their care may be negatively affected if they directly engaged or confronted clinicians about their behaviours. Conclusion: We found that patient engagement remains an underused method of preventing healthcare-associated infections, and the deep-seated public fears about individual vulnerabilities still need to be addressed.

Empowering patients in the hospital as a new approach to reducing the burden of health care–associated infections: The attitudes of hospital health care workers

BACKGROUND Any approach promoting a culture of safety and the prevention of health care-associated infections (HCAIs) should involve all stakeholders, including by definition the patients themselves. This qualitative study explored the knowledge and attitudes of health care workers toward the concept of patient empowerment focused on improving infection control practices. METHODS Semi-structured interviews were undertaken with 29 staff from a large hospital in Sydney, Australia. RESULTS There was virtually unanimous agreement among the participants that patients should be thought of as a stakeholder and should have a role in the prevention of HCAI. However, the degree of patient responsibility and level of system engagement varied. Although very few had previously been exposed to the concept of empowerment, they were accepting of the idea and were surprised that hospitals had not yet adopted the concept. However, they felt that a lack of support, busy workloads, and negative attitudes would be key barriers to the implementation of any empowerment programs. CONCLUSION Although the World Health Organization has recommended that patients have a role in encouraging hand hygiene as a means of preventing infection, patient engagement remains an underused method. By extending the concept of patient empowerment to a range of infection prevention opportunities, the positive impact of this intervention will not only extend to the patient but to the system itself.