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Introduction: Telepractice service delivery of allied health interventions to people with disability can potentially reduce access barriers and improve service equity. However, questions remain regarding telepractice functionality for people with disability. This study addressed questions related to how allied health clinicians and managers perceive telepractice as functioning in the provision of therapy services to people with disability. Methods: Thirteen interviews of allied health clinicians and managers from across Australia were conducted between 21 November and 22 February via MS teams. Qualitative methodology and critical realist theoretical paradigm underpin the study. Data analysis was completed using a reflective thematic analysis method and five themes were generated and described utilising an analytic metaphor. Results: The study themes were described in relation to a shopping for shoes analytic metaphor and the five themes included (1) a shoe for every foot, (2) planned purchases, (3) shoe on the other foot, (4) you need both shoes and (5) help choosing their shoes. In summary, the function of telepractice fits differently for each individual, similar to pairs of shoes. Conclusions: Telepractice has its own strengths and weaknesses and isn't a direct substitute for in‐person sessions, much like left and right shoes are similar but not the same. The results support participant perceptions that telepractice functions best as an adjunct to in‐person sessions through a flexible hybrid delivery model in the provision of therapy services to people with a disability. A strategy for improving perceived usefulness may involve positioning telepractice as unique with strengths and weaknesses, not replacing in‐person care. Patient or Public Contribution: The paper forms part of a larger codesign process which included customer and carer participants throughout the design and planning of the project, inclusion of a peer researcher, and the selection of the analytic metaphor including in the findings of this article production. [ABSTRACT FROM AUTHOR]

Introduction: Facilitators to implement shared cancer follow‐up care into clinical practice include mechanisms to allow the oncologist to continue overseeing the care of their patient, two‐way information sharing and clear follow‐up protocols for general practitioners (GPs). This paper aimed to evaluate patients, GPs and radiation oncologists (ROs) acceptance of a shared care intervention. Methods: Semi‐structured interviews were conducted pre‐ and post intervention with patients that were 3 years post radiotherapy treatment for breast, colorectal or prostate cancer, their RO, and their GP. Inductive and deductive thematical analysis was employed. Results: Thirty‐two participants were interviewed (19 patients, 9 GPs, and 4 ROs). Pre intervention, there was support for GPs to play a greater role in cancer follow‐up care, however, patients were concerned about the GPs cancer‐specific skills. Patients, GPs and ROs were concerned about increasing the GPs workload. Post intervention, participants were satisfied that the GPs had specific skills and that the impact on GP workload was comparable to writing a referral. However, GPs expressed concern about remuneration. GPs and ROs felt the model provided patient choice and were suitable for low‐risk, stable patients around 2–3 years post treatment. Patients emphasised that they trusted their RO to advise them on the most appropriate follow‐up model suited to their individual situation. The overall acceptance of shared care depended on successful health technology to connect the GP and RO. There were no differences in patient acceptance between rural, regional, and cancer types. ROs presented differences in acceptance for the different cancer types, with breast cancer strongly supported. Conclusion: Patients, GPs and ROs felt this shared cancer follow‐up model of care was acceptable, but only if the RO remained directly involved and the health technology worked. There is a need to review funding and advocate for health technology advances to support integration. Patient or Public Contribution: Patients treated with curative radiotherapy for breast, colorectal and prostate cancer, their RO and their GPs were actively involved in this study by giving their consent to be interviewed. [ABSTRACT FROM AUTHOR]

Introduction: Indigenous women experience high rates of family violence‐related head injuries. At present, lived experience accounts from Indigenous women are absent, which results in incomplete understandings and inadequate responses that have detrimental impacts on them and their families. The aim of this study was to gain insight into Indigenous women's personal and family perspectives regarding violence‐related traumatic brain injury (TBI), including impacts on life, as well as decision‐making processes about healthcare access and engagement. Methods: Purposeful sampling was used to complete semi‐structured interviews with 18 Indigenous women living in regional and remote Australia who had experienced TBI from family violence. The data from these interviews were augmented by data from interviews and focus groups with 28 community members, including family members or carers of Indigenous women living with TBI from family violence. Results: Three themes were conceptualised based on the data and research aims: interweaving of the past and the present—ways women experience brain injury; factors that inform decision‐making to access healthcare; and managing everyday changes that result from TBI from family violence. Indigenous women described living with a range of symptoms following repeated head injuries including problems with memory, cognition and concentration. A range of strategies to manage long‐term symptoms of TBI were used by Indigenous women and when they did seek healthcare, Indigenous women were required to navigate a range of barriers. Conclusions: The findings identify a range of gaps in healthcare and housing supports for Indigenous women with TBI from violence, highlighting the significant investment needed to develop responsive and appropriate pathways of care in regional and remote areas. A range of suggestions are discussed including development of a specialised workforce who can provide apppropriate follow‐up support, co‐designed concussion clinics and educational resources. TBI must also be a key aspect of policy and practice for services working with Indigenous women who have experienced violence to ensure appropriate responses are provided. Public or Patient Contribution: Indigenous women shared their views and experiences of TBI from family violence as well as decision‐making about accessing healthcare and managing TBI symptoms. As such, study participants provided public contributions to the research. [ABSTRACT FROM AUTHOR]

Introduction: Globally, there is an increasing demand for quality medical rehabilitation services. This is the first article of a two‐part series showing the findings from the Rehabilitation Choices study in which the main aim was to understand the current landscape of decision‐making, enablers and barriers to access appropriate rehabilitation services in the Australian setting. In Part 1, these insights were sought from a healthcare professionals' perspective. Methods: This was an exploratory, qualitative study, using semi‐structured interviews with a discussion guide that was codesigned together with rehabilitation clinicians and rehabilitation researchers. Themes and sub‐themes were identified using an inductive approach. Results: We interviewed a heterogeneous group of 31 professionals who are involved in making referral decisions about rehabilitation or who design and deliver rehabilitation programs, including specialist rehabilitation physicians and other medical doctors across in‐patient, outpatient, and primary care settings, allied health professionals, rehabilitation service managers, nurses, multicultural health liaison officers and rehabilitation research scientists. Three key themes relevant to barriers and enablers to service access were identified from the data: defining rehabilitation; a lack of timely access to patient and rehabilitation service data; and patient diversity not expected by the system. Conclusions: Healthcare professionals who make decisions about rehabilitation referrals and services feel that it was necessary for them to keep up to date with information relating to rehabilitation services. There was some concern regarding what rehabilitation constituted and what services were available for different clinical indications. They also indicated that current systems did not consider diversity among patients' needs and goals. Their recommendations included the need for better communication pathways, improved referral systems and resources that could help provide best practice of rehabilitative care in the future. Patient or Public Contribution: Three study team members had a lived experience of rehabilitation as a patient or carer, and previous experience participating in qualitative research. They worked with the study team to codesign the recruitment strategy, participant‐facing communications, the interview discussion guide, and the approach to the conduct of activities with participants and in the interpretation and contextualization of findings and all were involved in writing this manuscript. [ABSTRACT FROM AUTHOR]

Background and Context: Involving people with lived experience of health conditions and the public (consumers) in health research is supported by policy, practice and research funding schemes. However, consumer involvement programmes in discovery‐based preclinical research settings are uncommon. Few formal evaluations of these programmes are reported in the literature. Objective: This study aimed to evaluate an established patient and public involvement programme operating in a major Australian Discovery‐Based Medical Research Institute (DBMRI) to inform programme development and the wider field. Design and Participants: A multimethods programme evaluation incorporating demographic, descriptive and qualitative data obtained through consumer/researcher co‐developed online surveys and semistructured virtual interviews. Programme participants (n = 111) were invited to complete an online survey seeking feedback on their experience of involvement, programme processes and perceived impacts. A purposive sample of 25 participants was interviewed. Descriptive data were analysed using explanatory statistics and qualitative data from surveys and interviews were thematically analysed. Results: This consumer involvement programme was found to be useful and meaningful for most participants, with specific examples of perceived added value. Consumers most commonly engaged with researchers to inform research development, prepare funding applications or strengthen lay communication of science. Genuine consumer–researcher interactions, relationship development and mutual respect were key elements in a positive experience for participants. Opportunities to 'give back', to learn and to ground research in lived experience were identified programme strengths and benefits. Developing researcher training in how to work with consumers, increasing the diversity of the consumer group membership and expanding the range of consumer activities were identified opportunities for improvement. Organisational support and adequate programme resourcing were identified as key enablers. Conclusion: Discovery‐based preclinical research is often viewed as being distant from clinical application; therefore, consumer involvement may be considered less relevant. However this study identified value in bringing a strong consumer voice to the discovery‐based research process through a coordinated, organisation‐wide approach with the potential for application in similar preclinical research settings. Patient or Public Contribution: Four consumer partners from the DBMRI Consumer Advisory Panel were actively engaged in developing this programme evaluation. Specifically, these consumer partners co‐developed and pilot‐tested surveys and interview guides, reviewed and commented on project data analysis and reporting and also contributed as co‐authors by editing the manuscript. [ABSTRACT FROM AUTHOR]

Context: In vitro fertilisation (IVF) is now a common assisted reproductive technology (ART) procedure globally, with 8 million children alive today having been conceived utilising IVF. For many patients, IVF is a difficult experience with many discontinuing treatment because of emotional, relationship and financial stress, or intolerable physical side effects of hormone treatments. Design and Participants: A qualitative study, in which 31 professionals and 25 patients from the ART sector in Australia were interviewed. The interviews were analysed using codebook thematic analysis. Results: Our data indicates there are 'silences' within the therapeutic relationship of IVF, which may limit the capacity for patients to prepare emotionally, financially, or medically for the procedure, and may contribute to psychological distress and dissatisfaction with care. These 'silences' include what the patient 'is not told' by their clinician or 'does not hear' and what the patient feels they 'cannot say'. Discussion: Drawing upon the work of Jay Katz, Charis Thompson, and Miles Little on 'silences' and performance in clinical practice, we argue that although IVF is a complex and multifaceted procedure that is often conducted in a commercial setting, the clinical and therapeutic relationship between doctor and patient remains pivotal to the experiences of patients. The 'silences' within this relationship may impact negatively on decision‐making, and on the delivery and experience of care. Conclusions: Careful attention to the realities of IVF treatment in the clinic room (and awareness of the performances that hide them) should allow for more present and compassionate care. Such care may leave patients more satisfied with their experience and their choices, regardless of treatment outcomes. Patient or Public Contribution: This article draws on interviews with patients who had undergone or were currently undergoing IVF, as well as a range of representatives from the ART community (including reproductive medicine specialists, general practitioners, fertility nurses, counsellors, administrators in ART businesses and embryologists). [ABSTRACT FROM AUTHOR]

Objective: Health consumers (patients, their family, friends and carers) are frequently using their smartphones to record hospital clinical encounters. However, there is limited research which has explored the social interaction surrounding this behaviour. Understanding the consumer perspective is key to informing policy and practice. This study explored consumer attitudes and experiences regarding patient‐led recordings. Methods: Semistructured interviews were undertaken with 20 hospital consumers. Participants were recruited via advertising, posters and invitation letters. Interviews were digitally recorded and transcribed. Data were analysed using thematic analysis. Findings: Four main themes were identified relating to participant perspectives of patient‐led recordings: (1) consumers viewed clinician consent as important, although they reported different experiences of the consent process, (2) consumers indicated that a clinician refusing the recording had the potential to undermine the consumer–clinician relationship, (3) consumers were both uninformed and misinformed regarding relevant policy and legislation and (4) consumers expressed a number of expectations regarding their rights to record and of the health service in supporting this practice. Conclusion: Consumers want to record their clinical encounters with the consent of their clinician but are unprepared to navigate consent discussions. Health services and clinicians should inform consumers who want to record about their rights and responsibilities, to support the consent process and safe recording environments. Clinician refusal to consent to a patient‐led recording may not lead to increased covert recording; however, clear communication about the reasons for refusing a recording is needed to protect the consumer–clinician relationship. Patient or Public Contribution: A health consumer was part of the research team and was involved in all stages of this study, including the design, data analysis and reviewing of the manuscript. [ABSTRACT FROM AUTHOR]

Background: There is a need for effective health service solutions to provide greater structure and support for implementing evidence‐based practice in back pain care. Patient involvement in developing these solutions is crucial to increase relevance, acceptability and uptake. Objectives: To determine patients' perceived needs and barriers to best‐practice back pain care, and potential solutions to better address care needs. The study is the third in a series of needs assessment studies feeding into the 'idea generation' for service design in a large teaching hospital in a culturally and linguistically diverse community in metropolitan Sydney, Australia. Design: We conducted a combination of focus groups and in‐depth interviews using an interpretive description approach. We used inductive thematic analysis to identify the main themes. Setting and Participants: We purposively sampled patients with diverse characteristics from the neurosurgery and physiotherapy outpatient clinics, in particular those whose primary language was English, Arabic, Persian or Mandarin. Non‐English audio recordings were translated and transcribed by bilingual researchers. Results: There were 24 participants (focus groups = 9; individual interviews = 15) when data saturation was reached. The analysis identified three key themes with several subthemes around what service designers needed to understand in helping people with back pain in this setting: (1) This is who I am; (2) It's not working for me; and (3) What I think I need. Discussion and Conclusion: This study highlights that perceived unmet needs of patients are underpinned by unhelpful beliefs about the causes of and solutions for back pain, misaligned care expectations, unclear expectations of the hospital role and fragmentations in the health system. To design and implement a service that can deliver better back pain care, several solutions need to be integrated around: developing new resources that challenge unhelpful beliefs and set realistic expectations; improving access to education and self‐management resources; focusing on individualized care; using a collaborative multidisciplinary approach within the hospital; and better connecting with and directing primary health care services. Patient or Public Contribution: A consumer representative of the Western Sydney Local Health District provided input during study conceptualisation and is duly recognized in the Acknowledgements section. [ABSTRACT FROM AUTHOR]

Background: Refugees and asylum seekers arrive in the Australian community with complex health needs and expectations of healthcare systems formed from elsewhere. Navigating the primary healthcare system can be challenging with communication and language barriers. In multicultural societies, this obstacle may be removed by accessing language‐concordant care. Emerging evidence suggests language‐concordance is associated with more positive reports of patient experience. Whether this is true for refugees and asylum seekers and their expectation of markers of quality patient‐centred care (PCC) remains to be explored. This study aimed to explore the expectations around the markers of PCC and the impacts of having language‐concordant care in Australian primary healthcare. Methods: We conducted semi‐structured individual in‐language (Arabic, Dari, and Tamil) remote interviews with 22 refugee and asylum seekers and 9 general practitioners (GPs). Interview transcripts were coded inductively and deductively, based on the research questions, using Thematic Analysis. Extensive debriefing and discussion took place within the research team throughout data collection and analysis. Results: Community member expectations of markers of PCC are constantly evolving and adapting based on invisible and visible actions during clinical encounters. Challenges can occur in the clinical encounter when expectations are 'unsaid' or unarticulated by both community members and GPs due to the assumption of shared understanding with language concordant care. Expectations of what constitutes satisfactory, quality PCC are dynamic outcomes, which are influenced by prior and current experiences of healthcare. Conclusion: This study highlights the importance of understanding that language concordant care does not always support aligned expectations of the markers of quality PCC between community members and their GP. We recommend that GPs encourage community members to provide explicit descriptions about how their prior experiences have framed their expectations of what characterizes quality PCC. In addition, GPs could develop a collaborative approach, in which they explain their own decision‐making processes in providing PCC to refugees and asylum seekers. Patient or Public Contribution: Bilingual researchers from multicultural backgrounds and experience working with people from refugee backgrounds were consulted on study design and analysis. This study included individuals with lived experiences as refugees and asylum seekers and clinicians as participants. [ABSTRACT FROM AUTHOR]

Background: People with multiple sclerosis (MS), who are often immunocompromised, require complex care and engage with a variety of health‐care providers to manage their health. Objective: To elucidate people with MS' experiences of accessing health care during the COVID‐19 pandemic in Australia. Design: A qualitative study involving semi‐structured interviews and thematic analysis. Settings and participants: Eight adults with a clinical diagnosis of MS participated in telephone or video call interviews between June and July 2020. Results: Participants were aware that having MS made them more vulnerable to contracting COVID‐19. In some cases, usual care was postponed or not sought. Some circumstances warranted the risk of a face‐to‐face consultation. Benefits of telehealth consultations included improved access, convenience and being contact‐free. In comparison with video consultations, those via telephone were considered less personal and limited capacity to read body language, and for physical examination. Most participants hoped to incorporate telehealth into their future health‐care routines. Discussion and conclusion: Personal risk assessment and trust in health‐care professionals are determinants of the mode through which people with MS accessed health care during the COVID‐19 pandemic. Telehealth has been a valuable tool to mitigate COVID‐19 transmission through enabling contact‐free consultations. People with MS may find specific value in video consultations, which enable visualization of physical function. There is a need for training and support for all clinicians to conduct remote consultations. Patient or public contribution: This study was conducted by a team comprised of four people with MS, a neurologist and four health services researchers. [ABSTRACT FROM AUTHOR]

Background: Opportunities for cancer survivors' employment can both reflect and perpetuate health inequities, as employment is an important social determinant of health. Socio‐economic and geographic disadvantage is associated with greater difficulty finding work, but little is known about work needs of Australian cancer survivors living with disadvantage. Objective: This study examined survivor and health‐care professional (HCP) perspectives on barriers experienced by Australian cancer survivors experiencing disadvantage when attempting to remain at or return to work. Method: Focus groups and individual interviews were held with cancer survivors (N = 15) and oncology and primary HCPs (N = 41), focusing on communities at risk of disadvantage. Participants were asked about employment barriers and facilitators in general and in the context of disadvantage. Themes were identified using framework analysis. Results: Geographic and socio‐economic disadvantage resulted in specific individual‐ and system‐level barriers. These related to distance from treatment and support services and limited availability and suitability of work for survivors living with geographic disadvantage, and limited availability, security, and flexibility of work and previous unemployment for survivors living with socio‐economic disadvantage. Identified needs included system‐level changes such as public and workplace‐level education, legislative and policy changes, and better access to resources. Conclusions: Cancer survivors living with disadvantage experience limited access to flexible employment opportunities and resources, further perpetuating their disadvantage. Promotion of health equity for cancer survivors living with disadvantage requires systemic changes to support attempts to remain at/return to work. Patient or public contribution: This study included cancer survivors and HCPs as investigators, authors and participants. [ABSTRACT FROM AUTHOR]

Background: Consumer genomic testing for nutrition and wellness, (nutritional genomics), is becoming increasingly popular. Concurrently, health‐care practitioners (HPs) working in private practice (including doctors interested in integrative medicine, private genetic counsellors, pharmacists, dieticians, naturopaths and nutritionists) are involved as test facilitators or interpreters. Objective: To explore Australian consumers' and HPs' experiences with nutrigenomic testing. Method: Semi‐structured in‐depth interviews were conducted using predominantly purposive sampling. The two data sets were analysed individually, then combined, using a constant comparative, thematic approach. Results: Overall, 45 interviews were conducted with consumers (n = 18) and HPs (n = 27). Many of the consumer interviewees experienced chronic ill‐health. Nutrigenomic testing was perceived as empowering and a source of hope for answers. While most made changes to their diet/supplements post‐test, self‐reported health improvements were small. A positive relationship with their HP appeared to minimize disappointment. HPs' adoption and views of nutrigenomic testing varied. Those enthusiastic about testing saw the possibilities it could offer. However, many felt nutrigenomic testing was not the only 'tool' to utilize when offering health care. Discussion: This research highlights the important role HPs play in consumers' experiences of nutrigenomics. The varied practice suggests relevant HPs require upskilling in this area to at least support their patients/clients, even if nutrigenomic testing is not part of their practice. Patient or public contribution: Advisory group included patient/public group representatives who informed study design; focus group participants gave feedback on the survey from which consumer interviewees were sourced. This informed the HP data set design. Interviewees from HP data set assisted with snowball sampling. [ABSTRACT FROM AUTHOR]

Background: More than half of Australian adults manage one or more chronic conditions through ongoing interactions with general practitioners (GPs). Their experience of general practice interactions has important implications for their health outcomes and is thus important to explore in‐depth. Consumer expectations have emerged as a key consideration in this regard. How well they met in care settings can inform consumers' satisfaction and response to the care received. However, consumer expectations in Australian general practice are not well researched. Objective: To identify key consumer expectations in clinical interactions in Australian general practice based on consumer and GP perspectives. Design: Qualitative, phenomenological approach using thematic analysis of semi‐structured interviews. Setting and participants: Thirty‐one participants: 18 patients with one or more chronic (persisting > 6 months) conditions, 10 GPs and 3 GP registrars in Sydney, Australia. Results: Consumer expectations were strongly related to the context of their ongoing therapeutic relationship with a regular GP. Themes relating to some of the most commonly reported consumer expectations were as follows: (a) the importance of longevity and continuity; (b) having good rapport; (c) GP's respect for consumer opinions and expertise; (d) having effective communication; and (e) addressing mental health. Conclusion: Australian GPs and consumers prioritize a positive, long‐term clinical relationship in which they respect one another and can communicate their expectations freely. This has implications for consumer satisfaction and in turn ensuring relational continuity, which is particularly relevant to the ongoing care and management of consumers with chronic conditions. [ABSTRACT FROM AUTHOR]

Background: Navigating treatment pathways remains a challenge for populations with complex needs due to bottlenecks, service gaps and access barriers. The application of novel methods may be required to identify and remedy such problems. Objective: To demonstrate a novel approach to identifying persistent service gaps, generating potential solutions and prioritizing action. Design: Co‐creation and multi‐criteria decision analysis in the context of a larger, mixed methods study. Setting and participants: Community‐dwelling sample of older women living alone (OWLA), residing in Melbourne, Australia (n = 13‐37). Convenience sample of (n = 11) representatives from providers and patient organizations. Interventions: Novel interventions co‐created to support health, well‐being and independence for OWLA and bridge missing links in pathways to care. Main outcome measures: Performance criteria, criterion weights , performance ratings, summary scores and ranks reflecting the relative value of interventions to OWLA. Results: The co‐creation process generated a list of ten interventions. Both OWLA and stakeholders considered a broad range of criteria when evaluating the relative merits of these ten interventions and a "Do Nothing" alternative. Combining criterion weights with performance ratings yielded a consistent set of high priority interventions, with "Handy Help," "Volunteer Drivers" and "Exercise Buddies" most highly ranked by both OWLA and stakeholder samples. Discussion and conclusions: The present study described and demonstrated the use of multi‐criteria decision analysis to prioritize a set of novel interventions generated via a co‐creation process. Application of this approach can add community voice to the policy debate and begin to bridge the gap in service provision for underserved populations. [ABSTRACT FROM AUTHOR]

Background: A large proportion of ambulance callouts are for men with mental health and/or alcohol and other drug (AOD) problems, but little is known about their experiences of care. This study aimed to describe men's experiences of ambulance care for mental health and/or AOD problems, and factors that influence their care. Methods: Interviews were undertaken with 30 men who used an ambulance service for mental health and/or AOD problems in Australia. Interviews were analysed using the Framework approach to thematic analysis. Results: Three interconnected themes were abstracted from the data: (a) professionalism and compassion, (b) communication and (c) handover to emergency department staff. Positive experiences often involved paramedics communicating effectively and conveying compassion throughout the episode of care. Conversely, negative experiences often involved a perceived lack of professionalism, and poor communication, especially at handover to emergency department staff. Conclusion: Increased training and organizational measures may be needed to enhance paramedics' communication when providing care to men with mental health and/or AOD problems. [ABSTRACT FROM AUTHOR]

Context Health policy in Australia emphasizes the role of health service users (HSU) in managing their own care but does not include mechanisms to assist HSUs to do so. Objective To describe motivation towards or away from self-management in a diverse group of older Australians with diabetes, chronic heart failure (CHF) or chronic obstructive pulmonary disease (COPD) and suggest policy interventions to increase patient motivation to manage effectively. Design Content and thematic analyses of in-depth semi-structured interviews. Participants were asked to describe their experience of having chronic illness, including experiences with health professionals and health services. Secondary analysis was undertaken to expose descriptions of self-management behaviours and their corresponding motivational factors. Participants Health service users with diabetes, COPD and/or CHF ( N = 52). Results Participant descriptions exposed internal and external sources of motivation. Internal motivation was most often framed positively in terms of the desire to optimize health, independence and wellness and negatively in terms of avoiding the loss of those attributes. External motivation commonly arose from interactions with family, carers and health professionals. Different motivators appeared to work simultaneously and interactively in individuals, and some motivators seemed to be both positive and negative drivers. Conclusion Successful management of chronic illness requires recognition that the driving forces behind motivation are interconnected. In particular, the significance of family as an external source of motivation suggests a need for increased investment in the knowledge and skill building of family members who contribute to care. [ABSTRACT FROM AUTHOR]