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Full Text, Thesis (PhD Doctorate), Doctor of Philosophy (PhD), School of Human Services and Social Work, Griffith Health, Chronic conditions are the leading cause of mortality worldwide. With the majority of Australians reported to have one or more chronic conditions, this is a key priority area for the Australian Government and healthcare sector. As medication is frequently used to manage chronic conditions, pharmacists, as medication experts, are well placed to help these consumers. Health professionals, including pharmacists, are increasingly being encouraged to meet consumer needs in a patient-centred manner, i.e. empowering, individualised, respectful and holistic care. Yet, there has been limited insight into what pharmacy services would best meet the needs of consumers with chronic conditions and their carers. This exploratory study examined how pharmacies, as accessible healthcare destinations, could better assist these consumers. A mixed methods approach was adopted to gain a better understanding of the lived experiences and healthcare priorities of consumers who were newly diagnosed with, or had established chronic conditions, were unpaid carers, or both. Methods included a systematic review, semi-structured interviews, the Nominal Group Technique and a survey, between November 2011 and January 2014. Participants were purposively sampled from four Australian regions: Logan-Beaudesert and Mt Isa, Queensland; Perth, Western Australia; and Northern Rivers, New South Wales. These areas represent diversity in culture, socioeconomic status, location and pharmacy access.

Background To optimize positive outcomes, the design of new pharmacy services should consider the preferences of consumers with chronic condition(s) and their carers. Objectives (i) To evaluate the relative importance of community pharmacy service characteristics, from the perspective of consumers with chronic condition(s) and carers; (ii) To compare consumer and carer preferences to health professional beliefs about ideal service characteristics for consumers. Method A discrete choice experiment was completed by consumers with chronic condition(s) and/or carers (n = 602) and health professionals (n = 297), recruited from four regions in Australia. Participants were each randomized to one survey version containing four (from a total 72) different choices between two new pharmacy services. Consumer and carer participants were also given an ‘opt out’ alternative of current service. Each service was described using six attributes related to pharmacy service characteristics: continued medicines supply, continuity and coordinated care, location, medication management, education and information, and cost. Results Consumers and carers placed highest priority on continued medicines supply by a pharmacist for regular and symptom flare up medicines (100 priority points), a pharmacy located within a ‘one-stop’ health center (61 points) and home delivery of medicines (52 points). Although continued medicines supply was most important for consumers and carers, pharmacy location was perceived by health professionals to be the most important characteristic for consumers. Participants were less inclined to choose new services if their current pharmacy offered high quality services that were person-centered, easy to access and responsive to their needs. Younger, more highly educated and employed participants, and those with established condition(s) were more likely to choose new services. Conclusions Person-centered care is a fundamental tenet for

Background: It is well established that health consumer opinions should be considered in the design, delivery, and evaluation of health services. However, the opinions of people with chronic conditions and their carers and what they actually consider as ideal healthcare is limited. The aim of this study is to investigate the healthcare priorities of consumers with chronic conditions and their carers, if there are differences between these two groups, and if priorities differ depending on geographical location. Methods: The nominal group technique was used as a method to identify what is currently important to, or valued by, participants. This method was also particularly suited to learning about healthcare problems and generating important solutions, thereby helping to bridge the gap between research and policy. Recruitment was carried out via purposive sampling, with the assistance of community pharmacies, general practices, various health agencies, government and non-government organisations. A total of 11 nominal groups were conducted; five groups consisted predominantly of consumers (n = 33 participants), two groups consisted predominantly of carers (n = 12 participants) and four were mixed groups, i.e. consumers, carers, and both (n = 26 participants). Results: The findings suggested that to create a model of ideal healthcare for people with chronic conditions and their carers, appropriate and timely healthcare access was of paramount importance. Continuity and coordinated care, patient-centred care and affordability were equally the second most important healthcare priorities for all groups. When compared with other groups, access was discussed more frequently among participants residing in the rural area of Mount Isa. Compared to consumers, carers also discussed priorities that were more reminiscent with their caring roles, such as increased access and continuity and coordinated care. Conclusions: Access to healthcare is the most important priority for people

Living in a rural or remote environment presents unique challenges for people with chronic conditions, mainly those created by limited health-care services and the physical and emotional isolation. Yet, research on how people self-manage their chronic conditions in such locations is limited. This study aims to contribute to research and clinical practice by describing the ways in which a diverse group of rural and remote people with a range of chronic conditions, and their unpaid carers, self-manage their conditions. Using semi-structured in-depth interviews, data was collected from a sample of 32 participants, residing in one of two regions of Australia: Mount Isa/North West region of Queensland and the Northern Rivers area of New South Wales. Our findings suggest that although self-managing in a rural and remote context requires many of the lifestyle changes necessary in urban areas, the uniqueness of the rural lifestyle and the limited availability of health care results in, at times, creative forms of self-management. Health-care professionals and policy makers need to be cognisant of the ways in which rural and remote residents modify self-management strategies to suit their needs, and help them develop self-management plans tailored to the realities of their rural environment.

OBJECTIVE To explore the attributes of pharmacy choice for people with chronic conditions. METHODS Semi-structured interviews were conducted between May and October 2012, across four regions in three Australian states. Purposive sampling was used to recruit participants with chronic conditions and unpaid carers. Interviews were analysed via the constant comparison method. KEY FINDINGS Ninety-seven interviews were conducted. The majority of participants were regular patrons of one pharmacy and five attributes influenced this choice: patient-centred care, convenience, price, personal trait or preference and service/medication need. Patient-centred care, such as providing individualised medication counselling, continuity of care, development of relationships and respectful advice, emerged as an important attribute. There was minimal discussion as to choosing a pharmacy based on the provision of professional services, underscoring the limited consumer knowledge of such services and related standards of care. CONCLUSION Patient-centred care is an important attribute of quality care as perceived by people who are regular community pharmacy users. These findings highlight the need for pharmacy staff to implement a patient-centred approach to care, thus meeting the perceived needs of their customers. A greater effort is also necessary to raise the profile of pharmacy as a healthcare destination.

The nominal group technique (NGT) is a method to elicit healthcare priorities. Yet, there is variability on how to conduct the NGT, and limited guidance on how to analyse a diverse sample of multiple groups. This paper addresses some of this ambiguity, and explores whether different approaches to analysis provide the same outcome/s. Conceptual papers and empirical studies were identified via PubMed and informed an adapted version of the NGT. Twenty-six nominal groups were conducted, which provided in-depth knowledge on how to best conduct this method. Pilot group data were used to compare different analysis methods and to explore how this impacted on reported outcomes. Data analyses for large data-sets are complex; thematic analysis is needed to be able to conduct across group comparisons of participant priorities. Consideration should be given not just to the strength, i.e. sum of votes, or relative importance of the priority, but to the voting frequency, i.e. the popularity of the idea amongst participants; our case study demonstrated that this can affect priority rankings for those ideas with the same score. As a case study, this paper provides practical information on analysis for complex data sets. Researchers need to consider more than one analysis process to ensure that the results truly reflect participant priorities. A priority that has a high score may not necessarily reflect its popularity within the group; the voting frequency may also need to be considered.

Background Consumer health organisations (CHOs), which operate outside the mainstream healthcare system with a specific focus on supporting people to self-manage their health conditions, have become widespread. Yet, there has been little systematic research into CHOs, including their perceived benefits and barriers, which encourage or deter their access by people with a variety of chronic health conditions. Aim This study explored the benefits of CHOs in self-management and also the barriers that inhibit their access, from the perspective of people with chronic conditions and their unpaid carers. Methods In-depth, semi-structured interviews were completed with 97 participants across four regions of Australia. The sample included a high representation of people from culturally and linguistically diverse backgrounds and Aboriginal and Torres Strait Islander people as well as non-indigenous Australians. Findings Three inter-related themes were identified that represented the benefits of involvement and participation in CHOs: knowledge and information, connection and support and experiential learning. However, limited access pathways emerged as a barrier that inhibited a person’s entry into CHOs. Furthermore, the person’s beliefs and experiences about their own health condition(s) also inhibited their continued participation in CHO programmes. Conclusion Although our findings confirm that CHOs are a valuable resource in alleviating the ‘work of being a patient’ for some people, there seems to be some barriers that prevent their full access and utilisation. Structured integration systems to increase the reliable delivery and accessibility of CHOs are needed to ensure that people who would benefit from accessing them can do so.

Background Community pharmacies are ideally located as a source of support for people with chronic conditions. Yet, we have limited insight into what innovative pharmacy services would support this consumer group to manage their condition/s. The aim of this study was to identify what innovations people with chronic conditions and their carers want from their ideal community pharmacy, and compare with what pharmacists and pharmacy support staff think consumers want. Methods We elicited ideas using the nominal group technique. Participants included people with chronic conditions, unpaid carers, pharmacists and pharmacy support staff, in four regions of Australia. Themes were identified via thematic analysis using the constant comparison method. Results Fifteen consumer/carer, four pharmacist and two pharmacy support staff groups were conducted. Two overarching themes were identified: extended scope of practice for the pharmacist and new or improved pharmacy services. The most innovative role for Australian pharmacists was medication continuance, within a limited time-frame. Consumers and carers wanted improved access to pharmacists, but this did not necessarily align with a faster or automated dispensing service. Other ideas included streamlined access to prescriptions via medication reminders, electronic prescriptions and a chronic illness card. Conclusions This study provides further support for extending the pharmacist’s role in medication continuance, particularly as it represents the consumer’s voice. How this is done, or the methods used, needs to optimise patient safety. A range of innovative strategies were proposed and Australian community pharmacies should advocate for and implement innovative approaches to improve access and ensure continuity of care.

OBJECTIVE: To explore the perceptions of Australian consumers and carers about the financial burden associated with medicines used for the treatment of chronic conditions. METHOD: Semi-structured interviews were undertaken with individuals (n=97) who identified as having a chronic condition(s) (n=70), cared for someone with a chronic condition(s) (n=8), or both (n=19). Participants included individuals identifying with an Aboriginal or Torres Strait Islander (n=23) or Culturally and Linguistically Diverse (n=19) background. Data were analysed using the constant comparison method and reported thematically. RESULTS: Participants described substantial costs associated with medicines use, along with aggravating factors, including the duration and number of medicines used, loss of employment, lack of pricing consistency between pharmacies and the cost of dose administration aids. Consequences included impacts on medicine adherence, displacement of luxury items and potentially a reduced financial incentive to work. Understanding and beliefs related to pharmaceutical pricing policy varied and a range of proactive strategies to manage financial burden were described by some participants. CONCLUSIONS: The financial burden associated with medicines used for the management of chronic conditions by Australian consumers is substantial. It is compounded by the ongoing need for multiple medicines and indirect effects associated with chronic conditions, such as the impact on employment. WHAT IS KNOWN ABOUT THE TOPIC?: Medicines are a common form of treatment in chronic conditions. The financial burden related to medicines use, including co-payments, is associated with reduced adherence and other cost-coping strategies. Out of pocket costs for prescription medicines are relatively high in Australia compared with some other countries, including New Zealand and the United Kingdom. Australian consumers with chronic illness are likely to be at particular risk of financial burden associa

BACKGROUND Rates of chronic illness are rising in Australia and as medications are frequently used in the management of a range of chronic conditions, community pharmacists are in an ideal position to better assist these consumers. There is currently limited information as to how pharmacy can do this from the perspective of consumer health organizations, health advocates and professional support organizations. OBJECTIVES To explore new roles, opportunities and any associated barriers for community pharmacy to better assist consumers with chronic illnesses. METHODS Representatives of non-government consumer health organizations (n = 10) were interviewed from the key health priority areas emphasized by the Australian government. Health advocates (n = 3), innovative health care professionals (n = 4) and representatives of health care professional organizations (n = 4) from pharmacy and medicine also participated. Interviews were analyzed via thematic analysis. RESULTS Twenty-one in-depth interviews were conducted. The core finding was the potential for community pharmacies to become a health hub destination, whereby pharmacy staff assist consumers with chronic conditions to: navigate the health system (e.g., provide information on support services), manage their medications, and provide health advocacy. Participants expressed their concern that consumers may not be aware of the breadth of the pharmacist's expertise and that further collaboration is needed with non-government consumer health organizations and other health providers. Emphasis was placed on the improvement of the pharmacist's current role, particularly in the area of medication advice and accessibility, with the current pharmacy remuneration model identified as a barrier to becoming a health hub destination. CONCLUSION The eventual progression toward a health hub destination was seen to be important to better assist consumers with chronic conditions. This focuses on a mo

Concepts such as patient-centered care and shared decision-making are increasingly prominent topics in discourse on quality in healthcare with the growing prevalence of chronic disease. Although patient-centered care has been touted as a way forward, it remains an ambiguous concept with variable application in healthcare. Greater clarity is needed around the concept of patient-centered care alongside a stronger knowledge base on the perspectives of patients with complex needs and service providers, including those outside the formal healthcare system, such as consumer health organizations (CHO). This study explored CHO patient-centered policy, related practice and organizational views on the potential value of pharmacy delivered patient-centered care. In-depth interviews were conducted with 15 organizational representatives until no new themes emerged. Data were concurrently thematically analyzed by 3 researchers from a public health or pharmacy background. Participants called for a paradigm shift away from the paternalistic biomedical model to shared power that values patient choice and promotes active engagement in health. There was disparity between articulation of policy and practice, with CHOs often more patient-centered than they claimed to be. Participants described a wealth of innovative and often patient-centered services and ascribed under-utilization of these resources to limited awareness. Selected CHOs adopted strategies that health professionals can learn from, such as combining multiple elements of patient-centered care and seeking to build patient capacity to self-manage. Health professional education, current infrastructure and remuneration were cited as barriers to more widespread delivery of patient-centered care. However, participants suggested creative solutions to address selected factors, some specific to pharmacy. Both pharmacy and CHOs are under-utilized healthcare resources and there is potential for synergy between these sectors to promote

There is growing interest in patient-centered care, but there is little guidance about the interventions required for its delivery and whether it leads to better health outcomes. This systematic review evaluates the efficacy of patient-centered care interventions for people with chronic conditions. Thirty randomized controlled trials were identified from health-related databases. The findings indicated that most interventions were based on the notion of empowering care and included attempts to educate consumers or prompt them about how to manage a health consultation. Other common interventions focused on training providers in delivering empowering care. Although it was difficult to draw firm conclusions because of the moderate to high risk of bias of the research designs, this review has shown some promising findings from implementing a patient-centered care approach. There appeared to be benefits associated with this model of care in terms of patient satisfaction and perceived quality of care.

Objectives To explore consumer awareness, experience and expectations of Australian community pharmacy practice, from the perspectives of consumers with chronic health conditions, carers or both. Methods Semi-structured in-depth interviews were undertaken in four diverse regions of Australia. The constant comparison method was used for analysis purposes. Key findings Ninety-seven interviews were conducted. Participants had limited understanding regarding the role of community pharmacy staff and the Pharmaceutical Benefits Scheme (PBS). Pharmacists were viewed primarily as medication suppliers, and the services provided by pharmacy, such as Home Medication Reviews, are predominantly unknown. Confusion still exists with respect to generic medications, medication pricing and how the PBS safety net system works. Conclusions There is public uncertainty about specific aspects of Australian pharmacy practice. This is despite the introduction of newer professional services targeting chronic health conditions and extensive marketing campaigns involving pharmacy. If community pharmacy is to better assist consumers with chronic conditions, there needs to be improved community awareness of the professions current scope of practice and the system it works within.

Objectives To explore the perspectives of consumer health organizations about the burden of chronic illness and multiple treatment regimens experienced by the consumers they represent. Methods In-depth interviews (n = 15) were conducted with senior representatives from peak Australian consumer health organizations representing diabetes, asthma, cardiovascular disease, cancer, musculoskeletal illness and mental health. Results Medication burden, which included aspects such as multiple medications, side effects, stigma and adverse events resulting from medication use, emerged as the most significant and prevalent theme. Carer burden and the negative impact of financial burden was widely discussed, particularly for low-income earners with claims that these consumers were forced to prioritise medications according to how effective they perceived them to be. Time taken to learn about treatment, administer, and monitor or travel to obtain treatment also emerged as being burdensome, however, difficulty accessing treatment was considered to be particularly burdensome. The disjointed nature of care among healthcare services was thought to create a sense of confusion and distress. Discussion Many of the issues discussed by participants corroborated existing research, underscoring the complementary provider, and advocacy role of these organisations in mitigating treatment burden for people with chronic illness.