The case for integrated health and community literacy to achieve transformational community engagement and improved health outcomes: an inclusive approach to addressing rural and remote health inequities and community healthcare expectations.

CONTEXT: Despite the substantial investment by Australian health authorities to improve the health of rural and remote communities, rural residents continue to experience health care access challenges and poorer health outcomes. Health literacy and community engagement are both considered critical in addressing these health inequities. However, the current focus on health literacy can place undue burdens of responsibility for healthcare on individuals from disadvantaged communities whilst not taking due account of broader community needs and healthcare expectations. This can also marginalize the influence of community solidarity and mobilization in effecting healthcare improvements. OBJECTIVE: The objective is to present a conceptual framework that describes community literacy, its alignment with health literacy, and its relationship to concepts of community engaged healthcare. FINDINGS: Community literacy aims to integrate community knowledge, skills and resources into the design, delivery and adaptation of healthcare policies, and services at regional and local levels, with the provision of primary, secondary, and tertiary healthcare that aligns to individual community contexts. A set of principles is proposed to support the development of community literacy. Three levels of community literacy education for health personnel have been described that align with those applied to health literacy for consumers. It is proposed that community literacy education can facilitate transformational community engagement. Skills acquired by health personnel from senior executives to frontline clinical staff, can also lead to enhanced opportunities to promote health literacy for individuals. CONCLUSIONS: The integration of health and community literacy provides a holistic framework that has the potential to effectively respond to the diversity of rural and remote Australian communities and their healthcare needs and expectations. Further research is required to develop, validate, and evaluate the three levels of community literacy education and alignment to health policy, prior to promoting its uptake more widely.

A community engaged primary healthcare strategy to address rural school student inequities: a descriptive paper.

AIM: This descriptive paper aims to describe the design and implementation of a community engaged primary healthcare strategy in rural Australia, the Primary Healthcare Registered Nurse: Schools-Based strategy. This strategy seeks to address the health, education and social inequities confronting children and adolescents through community engaged service provision and nursing practice. BACKGROUND: There have been increasing calls for primary healthcare approaches to address rural health inequities, including contextualised healthcare, enhanced healthcare access, community engagement in needs and solutions identification and local-level collaborations. However, rural healthcare can be poorly aligned to community contexts and needs and be firmly entrenched in health systems, marginalising community participation. METHODS: This strategy has been designed to enhance nursing service and practice responsiveness to the rural context, primary healthcare principles, and community experiences and expectations of healthcare. The strategy is underpinned by a cross-sector collaboration between a local health district, school education and a university department of rural health. A research framework is being developed to explore strategy impacts for service recipients, cross-sector systems, and the establishment and maintenance of a primary healthcare nursing workforce. FINDINGS: Although in the early stages of implementation, key learnings have been acquired and strategic, relationship, resource and workforce gains achieved.

Service-learning partnerships: Features that promote transformational and sustainable rural and remote health partnerships and services.

OBJECTIVE: To describe features that promote transformational and sustainable community engaged health partnerships and services in rural and remote Australian locations. DESIGN: A pragmatic qualitative study using focus groups and individual semi-structured interviews. Data were analysed using four stages of data comparison. SETTING: Far west New South Wales, Australia. The health partnership, initiated by primary school principals in 2008, aimed to address allied health service inequities experienced by regional children. A service-learning program was developed, aligning allied health student placements to student-led services. The program has been operational since 2009. PARTICIPANTS: Community participants included school principals (n = 7) and senior managers (n = 2) from local facilitating agencies. Campus participants included allied health students (n = 10) and academics (n = 2), one rurally located with student supervision responsibility and one metropolitan located with a strategic partnership role. MEASURES: All data were collected by an independent researcher. Four stages of data comparison were undertaken. A thematic analysis was conducted and six key features identified through Stage Four comparison, a comparison across the findings from discrete community and campus groups, reflecting transformational community engagement were identified. RESULTS: These six features are: (i) identifying and responding to community need, (ii) providing services of value, (iii) community leadership and innovation, (iv) reputation and trust, (v) consistency, and (vi) knowledge sharing and program adaptation. CONCLUSION: We propose that these features contributed to the transformational engagement of community and university participants. These features can inform health sector approaches to community engagement, enhancing rural and remote service accessibility, acceptability, and sustainability outcomes.

Patient perspectives on ipilimumab across the melanoma treatment trajectory.

PURPOSE: Ipilimumab was the first FDA-approved agent for advanced melanoma to improve survival and represents a paradigm shift in melanoma and cancer treatment. Its unique toxicity profile and kinetics of treatment response raise novel patient education challenges. We assessed patient perceptions of ipilimumab therapy across the treatment trajectory. METHODS: Four patient cohorts were assessed at different time points relative to treatment initiation: (1) prior to initiation of ipilimumab (n = 10), (2) at weeks 10-12 before restaging studies (n = 11), (3) at week 12 following restaging studies indicating progression of disease (n = 10), and (4) at week 12 following restaging studies indicating either a radiographic response or disease stability (n = 10). Patients participated in a semistructured qualitative interview to assess their experiences with ipilimumab. Quality of life was assessed via the Functional Assessment of Cancer Therapy-General and its Melanoma-specific module. RESULTS: Perceived quality of life was comparable across cohorts, and a majority of the sample understood side effects from ipilimumab and the potential for a delayed treatment response. Patients without progression of disease following restaging studies at week 12 held more positive views regarding ipilimumab compared to patients who had progressed. CONCLUSION: Patients generally regarded ipilimumab positively despite the risk of unique toxicities and potential for delayed therapeutic responses; however, those with progression expressed uncertainty regarding whether taking ipilimumab was worthwhile. Physician communication practices and patient education regarding realistic expectations for therapeutic benefit as well as unique toxicities associated with ipilimumab should be developed so that patients can better understand the possible outcomes from treatment.

Cancer-related internet information communication between oncologists and patients with breast cancer: a qualitative study.

OBJECTIVE: Many patients with cancer search out information about their cancer on the internet, thus affecting their relationship with their oncologists. An in-depth analysis of patient-physician communication about information obtained from the internet is currently lacking. METHODS: We audio-recorded visits of patients with breast cancer and their oncologists where internet information was expected to be discussed. Inductive thematic text analysis was used to identify qualitative themes from these conversations. RESULTS: Twenty-one patients self-reported discussing cancer-related internet information (CRII) with their oncologists; 16 audio recordings contained detectable discussions of CRII and were analyzed. Results indicated that oncologists and patients initiated CRII discussions implicitly and explicitly. Oncologists responded positively to patient-initiated CRII discussions by (1) acknowledging their limited expertise/knowledge, (2) encouraging/approving using the internet as an information resource, (3) providing information/guidance on the proper use of internet searches, (4) discussing the pros and cons of relevant treatment options, or (5) giving information. Finally, patients reacted to the CRII discussions by (1) indicating that they only used reputable sources/websites, (2) asking for further explanation of information, (3) expressing continued concern, or (4) asking for the oncologist's opinion or recommendation. CONCLUSIONS: These results indicate that the majority of patients introduce internet information implicitly, in order to guard against any threat to their self-esteem. Physicians, in turn, seem to respond in a supportive fashion to reduce any threat experienced. Future interventions may consider providing prescription-based guidance on how to navigate the internet as a health information resource and to encourage patients to bring these topics up with their oncologist.