As we discussed in our first editorial in the December 2018 issue (Polaha & Sunderji, 2018), an emerging science of knowledge translation (also known as implementation and dissemination science) aims to bridge the disconnect between evidence and practice. Researchers are increasingly engaging with knowledge users and other stakeholders as a key strategy to promote uptake. This may include policymakers, payers, and—the focus of this editorial—patients. Patient-oriented research is featured in national research agendas around the world including in Canada (Canadian Institutes of Health Research, 2018) and the United States (Patient-Centered Outcomes Research Institute, see https://www.pcori.org/), in part as it may contribute one solution to the “bench to bedside” gap (Greenhalgh, Jackson, Shaw, & Janamian, 2016; Jull, Giles, & Graham, 2017; McGavin, 2017). In this editorial, we provide a general introduction to research, its potential, and its realized value. We also suggest strategies for conducting patient-oriented research effectively, including a description of common barriers and how they can be dealt with. We hope this background will inspire you to get started with patient-oriented research and to learn more, as well as to share your patient-oriented research through Families, Systems, & Health.

Background: Patients with head and neck cancer (HNC) carry a clinically significant symptom burden, alterations in function (e.g. impaired ability to chew, swallow, and talk), and decrease in quality of life. Furthermore, treatment impacts social activities and interactions as patients report reduced sexuality and high rates of depression. Patients may suffer undue anxiety because they find treatment incomprehensible, which is partially a function of limited, understandable information. This can be particularly challenging for patients with limited health literacy. Furthermore, a globalized world consisting of cultural differences increases the need to enhance transparent communication of risk. Research on risk literacy and medical decision-making validates that across different cultures, people often have severe obstacles in grasping a host of prerequisite concepts for understanding health-related risk information such as numbers, graphs, and basic medical facts. Patients’ perceptions of having obtained adequate information prior and during treatment are predictive of positive outcomes. Providing patient-centered decision-support, utilizing visual images, may increase understanding of treatment options and associated risks to improve satisfaction with their decision and consultation, while reducing decisional conflict. A scoping review was conducted on electronic, decision aids (DAs) for oncology patients that returned 4217 articles, but only 167 for HNC, with 12 meeting the inclusion criteria. Three themes were identified: (1) both patients and physicians valued the DA; (2) DAs should be visually supported by images; and (3) use of a DA lessened decisional conflict and anxiety while improving knowledge, satisfaction and shared decision-making. This informed the design of a prototype DA. Semi-structured interviews were conducted with 12 survivors of HNC who completed treatment at BC Cancer- Victoria on their experiences, feedback on the utility of a DA, and insights into design features. Thematic analysis resulted in 12 themes that were organized into 3 categories. The first category, “the patient experience,” included three themes: “patients have high, through varying information needs”; “an emotional experience”; and “stories of coping, strength and resiliency.” The second category, “electronic DAs and decision support,” also included three themes: “familiarity with decision aids”; “support of concept: usefulness and of visual aids”; and “versatility of the prototype.” The last category, “evaluation of prototype”, contained six themes: “reaction to prototype”; “favourited features”; “complexity”; “preference for customizability”; “suggestions for improvement”; and “presentation device.” Key Message: The use of DAs have been shown to better inform and increase patients’ knowledge, accuracy of risk perception, and congruency between informed values and care choices allowing them to take part in active decision-making, compared to usual care. Survivors of HNC were in unanimous support of using visual images to help explain treatment and assist in decision making on treatment options. Furthermore, they contributed invaluable feedback on the prototype design, demonstrating the value of a co-design methodologies. / Graduate

Prior to the coronavirus disease-2019 (COVID-19) pandemic people with chronic obstructive pulmonary disease (COPD) were already experiencing social isolation due to the complex intersection of symptoms, and perceptions towards the illness. COPD is a chronic lung illness characterized by progressive shortness of breath, and decreasing lung function, with influenza and other respiratory illnesses more likely to have fatal consequences for this population. Societal beliefs and assumptions around behavioural risk factors, and in particular smoking, contribute to perceptions that COPD diagnosis, outcomes and experiences are self-inflicted and an individual responsibility. This is a perspective that fails to take into the account the complex contextual factors of the social determinants of health, where structural inequities result in higher smoking rates among populations with lower socioeconomic status. Further, these underlying societal values may compound the isolation experienced with COPD in which ongoing stigma towards the illness discourages people from identifying with a COPD diagnosis. The lack of identity may discourage developing a community where people can share experiences and strategies in living with COPD, and form a collective group that can advocate for change. Digital technologies (DTs), such as Facebook and Zoom offer new avenues to support social connectedness. However, little focus has been given on how people with COPD may (or may not) be using DTs to support their illness. This study explored the role DTs could serve in addressing social connectedness and experiences and outcomes for the COPD community. The study was informed by Mertens (2003, 2007) transformative approach where the knowledge of people living with COPD was prioritized in finding out what DTs they may be using to maintain social connectedness and to support their illness. The three stage mixed methods research design consisted of interviews, patient-reported outcome measures, patient-reported experience measures and a DT survey. Bazeley's (2018) approach was used to guide the integrative mixed analysis on data collected across the three stages. The overall findings were: 1) Participants’ experiences in living with COPD had uniquely prepared them for the COVID-19 pandemic, and it was the community that lacked capacity; 2) Dominant discourse around technology may be creating further harms to the COPD population that extend beyond the digital world; 3) Current digital health monitoring strategies for other chronic illnesses do not fully translate to the interests and needs for people living with COPD; 4) People living with COPD are using DTs, but prefer to keep their virtual world separate from their illness world; and 5) Considerations for DTs for COPD should move beyond managing outcomes, and include supporting experiences of living. Conducted between December 2018 and July 2020, and concurrent with the COVID-19 pandemic, the study demonstrated even greater importance with the onset of the pandemic in understanding how DTs may support social connectedness for people living with life-limiting chronic lung conditions. / Graduate / 2022-02-07

As youth with disabilities age and transition to adulthood, they will often need to learn how to manage their healthcare. Siblings are members of the family who can provide support to their sibling with a disability, but their roles during transition have not been well described in the literature. Typically developing (TD) siblings identified that they require information and resources in their roles. The overall objectives of the research studies in this doctoral dissertation are: 1) to synthesize existing resources and programs to support TD siblings of individuals with a disability; and 2) to develop a deeper understanding about the experiences of TD siblings. The findings from these studies are summarized in six scholarly manuscripts prepared for peer review and publication. All studies were conducted in partnership with siblings with lived experiences. Results from the review and qualitative document analysis of online resources to support TD siblings (Chapter 2) identified that limited resources are available to support TD siblings with healthcare management of their sibling with a disability. The scoping review (with the protocol described in Chapter 3 and results presented in Chapter 4) identified that programs for TD siblings are focused on knowledge development and skill acquisition for the TD siblings themselves or on empowerment by training TD siblings in skills that they can apply with their sibling with a disability. In addition to synthesizing existing knowledge, the qualitative study provided an in-depth understanding of the experiences of TD siblings (with the protocol described in Chapter 5) in two distinct areas: their roles and responsibilities (Chapter 6) and the influence of their sibling and family relationships on their identity formation during developmental stages (Chapter 7). Overall findings from this dissertation suggest areas for future directions, including knowledge transfer to share synthesized resources with target audiences, co-creation of resources to support siblings in their roles, and enhancement of programs to involve siblings and the whole family. / Dissertation / Doctor of Philosophy (PhD) / As youth with a disability transition to adulthood, many will assume greater responsibility for their own health management, activities often supported by family members, including siblings. Little information is available about the roles that siblings have to their sibling with a disability in this process. Siblings have mentioned that they need information and resources for their roles. The purpose of this work is to summarize resources and programs in Canada and internationally for siblings, as well as better understand the experiences of siblings of an individual with a disability. The information from this work can be helpful by sharing the summary of resources with siblings and families, create new resources to support siblings of an individual with a disability, and build on programs that allow for siblings and the whole family to participate.