Consumer engagement in doctoral research - what difference does it make?

STUDY DESIGN: Qualitative reflective descriptive study. OBJECTIVE: To evaluate a consumer engagement experience in the context of doctoral research. SETTING: Full time doctoral research at an Australian university. METHOD: A reflective evaluation of consumer engagement was completed, presented using the Guidance for Reporting Involvement of Patients and the Public, and frameworks of the research cycle, levels of consumer participation and integrated knowledge translation guiding principles providing theoretical background. Seven people with SCI (n = 6 men, n = 1 woman) replied to an expression of interest to join a Consumer Advisory Group for a doctoral researcher. Activities included: four 90-minute meetings, formal and ad-hoc email exchanges, and one-to-one conversations as required. Data sources included meeting transcripts, email correspondence, researcher's notes, and a short consumer survey. RESULTS: Consumer engagement occurred at each stage of the research cycle and met all guiding principles. Consumers participated at consultation and involving levels, however, collaboration evolved. Enablers included a common interest for the research topic, rapport with the researcher, using a virtual platform to disseminate research findings, supervisory support, and availability of funding. Challenges included complexity in harnessing different perspectives, using a virtual platform for group meetings, time, and consumers' negative experiences of media. CONCLUSION: Consumer engagement informed doctoral research by promoting nuanced perspectives on the unique experiences of living with SCI, providing unanticipated richness to data analysis. Building trust, and being responsive, led to in-depth consumer participation.

Media portrayal of spinal cord injury and its impact on lived experiences: a phenomological study.

STUDY DESIGN: This is a qualitative, phenomenological study. OBJECTIVE: To investigate media portrayal of spinal cord injury (SCI) as perceived by people with SCI and explore its impact on their lived experience. SETTING: People with SCI living in Australia. METHOD: Twenty-four participants, recruited using purposive and snowball sampling, completed in-depth, semi-structured interviews. Thematic data analysis followed an inductive, iterative process. RESULTS: Participants perceived media portrayed SCI through a narrow lens, describing how people with SCI were 'absent' or portrayed as either 'pity or pedestal'. Participants said media portrayed an inaccurate picture of their lived experience that perpetuated misunderstandings of SCI. This portrayal fostered unreasonable public expectations and assumptions about living with SCI, which presented in the participant's lives as uncomfortable interactions and inappropriate remarks. The impact for participants was a burden to explain SCI and justify what it meant for them. People with SCI would like media to portray a broader, more authentic representation of SCI to improve public understanding and to reduce the negative impact on their lives. CONCLUSION: People with SCI perceived a narrow and inaccurate portrayal of SCI in media that overlooked potential quality of life, overshadowed health and life domains they considered important and reinforced the idea that SCI can be overcome. People with SCI were mostly concerned with what was absent in media portrayal of SCI rather than what was present. Action for change lies in promoting information, expanding narratives and raising awareness to diverse abilities of people with SCI.

What is known about healthcare professional-patient communication when discussing stem cell therapies? A scoping review.

OBJECTIVES: When therapeutic options are limited, patients may invest hope in therapies proposed by healthcare professional, or those they find online. This review aims to explore how healthcare professional-patient communication is realised when discussing stem cell therapies. METHOD: Four electronic databases were systematically searched for relevant studies. Twenty-six studies met the inclusion criteria. Descriptive analyses and a thematic analysis guided by a functions of medical communication framework were performed on extracted data. RESULTS: Most included studies addressed communication in contexts of conventional stem cell therapies, such as bone marrow transplants for blood cancers. Few studies investigated communication in contexts of experimental stem cell therapies yet to receive regulatory approval. Two themes were identified as informational and relational aspects of communication, and a third theme being a mismatch in orientations. CONCLUSIONS: Communication between healthcare professionals and patients about stem cell therapies is practised using a combination of communication approaches that do not always align with patients' needs, hopes or expectations. PRACTICE IMPLICATIONS: The context of healthcare settings and health conditions are important when communicating about stem cell therapies. Acknowledging healthcare professionals' environmental and personal determinants can inform strategies to navigate complex discussions about stem cell therapies with patients.

The Development of a Communication Tool to Aid Parent-Centered Communication between Parents and Healthcare Professionals: A Quality Improvement Project.

Good communication is central to good healthcare. As a result of poor communication between parents and healthcare professionals (HCPs) in clinical settings, this study aimed to address this problem by developing a communication tool to empower parents and act as a prompt for HCPs to talk about the child's care and gather information at the point of admission to hospital about what is important to families, therefore supporting patient-centered communication. A design thinking process was used to develop a physical copy of Chloe's card and evaluate its use. Design thinking is a problem-solving approach, which uses an empathetic lens to integrate viewpoints of different stakeholders throughout the process of creating solutions. Design thinking involves five processes: (1) empathise-including a literature review and data synthesis, (2) define-by completing semi-structured interviews with parents about their experience of communication and HCPs perceptions of parent's experience of communication, (3) ideate-iterate the design of Chloe's card with parents and HCPs, (4) prototype-develop the design of Chloe's card, and (5) test-pilot test in clinical practice. Results from this initial study suggest that a small hand-held card, with emoticons and a place to write concerns, was acceptable to parents and feasible to use in clinical practice. Parents do not always feel heard by HCPs and a tool such as Chloe's card may help facilitate sharing of information about matters important to them and their child. However, some HCPs felt the need for a communication tool undermined their clinical skills. Feedback from HCP participants suggests that the idea of Chloe's card was acceptable and perceived as potentially being useful in clinical practice. Further work is required, as part of a larger study, to further refine this communication tool, identify those parents who would benefit most from Chloe's card, as well as to further refine the HCP process prior to implementing it into clinical settings. It was noted future iterations would benefit from a digital version linked with a child's electronic record, as well as multi-language versions and information for parents.

Media portrayal of elite athletes with disability - a systematic review.

BACKGROUND: The media plays an important role in shaping society's beliefs about disability and sport. The aim of this systematic review is to identify how elite athletes with disability are portrayed in the media. METHOD: Six electronic databases were searched from 2001 to March 2017 for quantitative or qualitative content analysis of media coverage of elite athletes with disability: SportsDiscus, CINAHL, PsychInfo, Medline 1996-, Embase, and Proquest. Quality assessment and data extraction were performed by two independent assessors. RESULTS: Seventeen moderate quality articles were included. Six themes emerged from the data such as frequency of articles and photos about elite athletes with disability; athlete gender; athlete nationality; disability; athleticism; and Olympic Games versus Paralympic Games. Our results show that elite athletes with disability are less visible in the media than their nondisabled counterparts; female athletes received less coverage than male; the media favored domestic athletes and certain types of disability; and, although there was a focus on athleticism, this was underpinned by a "supercrip" narrative and a medicalised description of disability. CONCLUSION: Although there has been a positive shift in the narrative around elite athletes with disability in media, relative absence and differing portrayal is present. Considering the power of media shaping society's perceptions of disability, further investigation is warranted. Implications for Rehabilitation Media has a role in how elite athletes with disability are portrayed and consequently perceived by the public. Elite athletes with disability rarely feature in media. Images of disability are minimized, and certain types of disabilities are favored. An athletic narrative is emerging; however, a medicalised description of athletes remains, shifting the focus from athleticism. "Supercrip" and "Superhuman" terms are commonly used, but may negatively impact the broader disability community.