My smart home: an auto-ethnography of learning to live with smart technologies.

Smart home technology is expected to be widespread in the future and to accommodate a green transition to reduce and time-shift energy consumption. However, smart technologies also have social consequences, which are important to understand. At a basic level, we need to know more about learning to live with these technologies and how they influence our everyday practices and routines. Providing in-depth longitudinal insights into these processes, this paper presents an auto-ethnography of living with smart home technology: a 20-month diary kept by one of the authors. The paper uses theories of practice to investigate details of learning processes when interacting with three selected technologies: smart alarm and lighting management, smart control of heating, and a smart electric vehicle (EV). Theories of learning have a well-established tradition within theories of practice, and the concept of "knowing how to go on" and the concept of practical intelligibility are central in this work. This paper investigates the adoption of new smart technologies and how they interact with learning processes in different material and social contexts. Such an approach can lay the groundwork for further empirical research with a broader set of materials. It can also provide knowledge to assist in the design of better technologies and in developing policies and regulations to promote this.

The photographers' gaze: the Mobile Radioisotope Exhibition in Latin America (1960-1965).

During the IAEA's Mobile Radioisotope Exhibition (1960-1965) through the eventful roads of five Latin American countries (Mexico, Uruguay, Argentina, Brazil, and Bolivia), a variety of photographs were taken by an unknown Mexican official photographer, and by Josef Obermayer, a staff driver from Vienna. The exhibition carried not only bits of nuclear sciences and technologies, but also the political symbolism of the 'friendly atom' as a token of modernization. The photographs embarked on different trajectories, though all of them ended up at the training and exchange official's desk in charge of the exhibition, Argentinian physicist Arturo Cairo. The ones taken in Mexico also had a local circulation as propaganda intended to promote radioisotope applications. The two sets of images were intended to show the contrast between modernity and traditional society, but they did it from different gazes. Our paper argues that, in the case of Mexico, the photographer reinforced representations of the country which were already popularized by Hollywood for foreign and local audiences. On the other hand, the Viennese photographer's gaze delivers an autoethnography of his dutiful journey. We also argue that Obermayer's projection is one of what Roger Bartra has conceptualized as the 'salvage on the mirror'.

When my four-year-old got cancer: a retrospective on resilience in a paediatric oncology ward.

The author presents an interpersonal experience between the author and her son during childhood cancer treatment and care, illustrating the complex relationship between childhood cancer and the term 'resilience'. During treatment and care, nurses used the term 'resilience' in an apparent attempt to reassure her. However, the author found that the concept distanced her from her and her son's experience, creating emotional distress for him. She discovered that the everyday use of resilience, devoid of its research connotations, has the potential to create barriers in understanding these experiences for the patient and the caregiver. For example, this everyday use did not account for the relationship that resilience has with growth. It is not just important in terms of diagnosing a tumour, it is also important for supporting the agency of a child and the cultivation of trustworthiness. A focus on growth supports the notion of an "active resilience," a process informed by research literature to help medical staff and families develop the child patient's capability for growing into resilience throughout the survivorship experience. By neglecting this relationship with growth, resilience was found to silence the agency and voice of the author's child which added to the difficulty that she had in providing care. As more children survive cancer, a meaningful use of the term resilience can support their recovery from the adversities of treatment and a life of adverse outcomes. The ethnographic detail provides the context necessary for contributing to and unpacking the normative use of the term resilience in paediatric oncology.

Performing collaborative research: a dramaturgical reflection on an institutional knowledge brokering service in the North East of England.

BACKGROUND: To increase the uptake of research evidence in practice, responsive research services have been developed within universities that broker access to academic expertise for practitioners and decision-makers. However, there has been little examination of the process of knowledge brokering within these services. This paper reflects on this process within the AskFuse service, which was launched in June 2013 by Fuse, the Centre for Translational Research in Public Health, in North East England. The paper outlines the challenges and opportunities faced by both academics and health practitioners collaborating through the service. METHODS: The authors reflected on conversations between the AskFuse Research Manager and policy and practice partners accessing the service between June 2013 and March 2017. Summary notes of these conversations, including emails and documents relating to over 240 enquiries, have been analysed using an auto-ethnographic approach. FINDINGS: We identified five challenges to knowledge brokering in an institutional service, namely length of brokerage time required, limits to collaboration, lack of resources, brokering research in a changing system, and multiple types of knowledge. CONCLUSIONS: To understand and overcome some of the identified challenges, we employ Goffman's dramaturgical perspective and argue for making better use of the distinction between front and back stages in the knowledge brokering process. We emphasise the importance of back stages for defusing destructive information that could discredit collaborative performances.

Tied to the worldly work of writing: Parent as ethnographer.

Parent narratives have contributed to ethnographic accounts of the lives of children with autism, but there are fewer examples of parents producing their own autoethnographies. This article explores the affordances of an online blog for enabling a parent of a child with autism to produce a written record of practice which may be considered 'autoethnographic'. Richardson's framework for ethnography as Creative Analytic Process (CAP) is applied to extracts from a blog post in order to consider its contribution, reflexivity, aesthetic merit and impact. The article addresses the methodological and ethical implications of reconceptualizing parents as researchers and the potential contribution of new writing platforms to the development of auto/ethnography.

Serving on a hospital board: A case study.

BACKGROUND: It is important for nurses to serve on hospital boards, largely to give voice to matters of quality and patient safety. PURPOSE: Describe what one nurse was able to accomplish on a statewide board over time as chair of the board's Quality and Patient Safety Committee. METHODS: The experience was analyzed using auto-ethnography and narrative analysis. DISCUSSION: After describing the organization, the paper summarizes the key issues on which the nurse took the lead, measures of success in the role, and learning acquired along the way. CONCLUSION: The "system" orientation of nurses is an asset in getting hospital boards to view themselves as institutional champions of quality.

What happened when I invited students to see me? A Black queer professor's reflections on practicing embodied vulnerability in the classroom.

What are the hesitations, dangers, and potentialities to inviting students to peruse my body? What possibilities arise from centering and leading with the body in the teaching/learning process? What risks and possibilities does this enactment pose to a Black lesbian educator? This auto/ethnography journeys through and reflects upon my experience enacting what I have coined "embodied vulnerability" as a pedagogical practice. Within this essay, I explore the interrelationship of race, gender, and embodiment (or, the performance of self). In addition, I reflect upon the pedagogical exercise-enacted over the last seven years-of asking students to see me and name what they see to illumine how social identities are read alongside context/location, as well as in relation to other assumed identities. Due to the historical and contemporary framing of Blackness and femininity-as paradoxical in popular culture and popular constructions of Blackness and queerness as antithesis-my queerness is undetectable in predominantly White classroom spaces. This essay documents my experience working through this contentious reality and offers the practice "embodied vulnerability" as a feminist practice and educative tool for mediating how the body is understood in the classroom, invoking identity and mobilizing the body in teaching/learning processes.

Recursive Health Care Structures and Choice in the Manner of Our Dying: An Auto-Ethnographic Account.

Science has shaped our understanding of the diseases we are diagnosed with. Medical treatment has transformed their natural courses. The law has married medical knowledge and experience to the legal competence of physicians to make ultimate decisions for the patient at the end of life. When it is our time to die, we will confront a pre-structured health care landscape affording some courses of action while limiting others. In this article, I provide an auto-ethnographic account of the dying of one woman, my wife, diagnosed with ovarian cancer. It speaks of our meeting with oncology, her refusal of aggressive treatment, and the palliative care allies we found for her way of dying. It also speaks of the opportunities for choice in dying that emerge when participants in the care collective accept that one of them must die while the others live on.

An Auto-Ethnographic Study of the Disembodied Experience of a Novice Researcher Doing Qualitative Cancer Research.

Qualitative health researchers who explore individuals' experiences of illness are exposed to an emotionally demanding work environment. After doing 49 interviews with cancer patients living alone, I was confronted with serious emotional distress that kept me from my work for almost 6 months. Because there is a need for discussion within academia about the emotional risks encountered by researchers, I used auto-ethnography to explore what I call the "three disembodied experiences" I encountered during the research: disembodiment linked with suppression of emotions, disembodiment linked with distal traumatization, and disembodiment linked with overidentification with the participant. I illustrate these concepts with personal stories of doing research with cancer patients living alone. I conclude that writing down experiences of doing qualitative research in an embodied and reflexive way holds two advantages: It can protect the researcher and enhance the quality of research.

An Auto-Ethnographic Study of "Open Dialogue": The Illumination of Snow.

This auto-ethnographic study describes the changes in the author's thinking and clinical work connected to her first-hand experience of Open Dialogue, which is an innovative, psychosocial approach to severe psychiatric crises developed in Tornio, Finland. In charting this trajectory, there is an emphasis on three interrelated themes: the micropolitics of U.S. managed mental health care; the practice of "dialogicality" in Open Dialogue; and the historical, cultural, and scientific shifts that are encouraging the adaptation of Open Dialogue in the United States. The work of Gregory Bateson provides a conceptual framework that makes sense of the author's experience and the larger trends. The study portrays and underscores how family and network practices are essential to responding to psychiatric crises and should not be abandoned in favor of a reductionist, biomedical model.

Creating creationists: The influence of 'issues framing' on our understanding of public perceptions of clash narratives between evolutionary science and belief.

Clash narratives relating to evolutionary science and personal belief are a recurrent theme in media or public space discourse. However, a 2009 British Council poll undertaken in 10 countries worldwide shows that the perception of a necessary clash between evolutionary worldviews and belief in a God is a minority viewpoint. How then does the popular conception that there is an ongoing conflict between evolution and belief in God arise? One contributing factor is the framing and categorization of creationism and evolutionism within large-scale surveys for use within media campaigns. This article examines the issue framing within four polls conducted in the United Kingdom and internationally between 2008 and 2013. It argues that by ignoring the complexity and range of perspectives individuals hold, or by framing evolutionary science as atheistic, we are potentially creating 'creationists' - including 'Islamic creationists' - both figuratively and literally.

Screen time, mute, mixed messages, and panic: An international auto-ethnographic study of knowledge workers during a pandemic.

The coronavirus pandemic provoked worldwide changes to the workplace, leading to rapid changes in lifestyles and working conditions. While organizations and governments struggled to develop regulations and policies, individuals were forced to find ways to manage work and life. During the pandemic and quarantine, a group of knowledge workers from around the world convened virtually and agreed to use qualitative autoethnographic methods to study how the quarantine disrupted their conventional patterns of work and care. In this article, we apply two communication perspectives-uncertainty reduction theory and re-silience-to participant diaries to understand how participants represent internal and external stressors, the efforts diarists employed to overcome those stressors, and their varying success in doing so. Post-hoc application of these communication concepts suggests that the diarists, though privileged in some ways, were not exempt from the social, professional, and emotional consequences of the pandemic and that their efforts to enact resilience were unevenly successful, especially in relation to their use of communications technology. Diarists reported struggling with uncertainty at numerous levels and that uncertainty contributed to individual emotional and cultural distress. Disruptions to work, home, and communities significantly affected wellbeing and ability to cope with challenges. Added to this were the complex and competing roles that diarists felt as they struggled to work from home, parent, and remain engaged.

An auto-ethnographic study of co-produced health research in a patient organisation: unpacking the good, the bad, and the unspoken.

BACKGROUND: In rare diseases, limited access to services and rare disease experts may force families to act as medical advocates for their child; they can volunteer to support clinician-initiated research or initiate and lead research themselves. Ketotic Hypoglycemia International (KHI) is a new, global organization for families affected by idiopathic ketotic hypoglycemia (IKH) and is run solely by volunteers. Doing research together, families and international experts in a collaborative process such as at KHI, also referred to as patient and public involvement and engagement (PPIE) or extreme citizen science, is often praised for its positive effects on the research and the stakeholders involved. METHODS: We used auto-ethnographic narratives from parents and medical professionals in KHI to report on their experiences with co-produced health research. All co-authors wrote down their experiences in relation to three topics: time invested, work invested and power dynamics. RESULTS: Whilst the parents and health care professionals felt a new hope for (their) children with IKH, they also felt pressure to contribute time or to be flexible in how and when they dedicated time towards the organization. The power dynamics were characterised by a change in the relationship between the parents and medical experts; the parent being taught by the expert shifted to the expert learning from the lived experience of the parent. Both parents and medical experts struggled with maintaining boundaries and safeguarding their mental health. CONCLUSION: Our findings call for the need to secure and prioritize funding for patient organizations, to enable them to create the sustainable architecture required for meaningful PPIE within these organizations. The morals and often deeply personal reasons for engaging with voluntary work in health research, can lead to overstepping of boundaries. As a result of our research, we call for the development of ethics of care guidelines within collaborative health research.

When confronted with a rare disease it is often hard to access information and or medical experts for help. Parents of children affected by idiopathic ketotic hypoglycemia (IKH) have joined in a patient-led organisation to initiate and lead research that could give answers to their medical questions and worries. Medical experts have been invited to join the organisation as members of the Scientific Advisory Board (SAB). When people report on health research conducted in collaboration with patients and or members of the public, they mostly mention positive outcomes. At KHI, some people had left the organisation and we had to deal with some difficult situations; so, we wanted to document and understand these challenges. Nine members of KHI, parents and medical experts, wrote down their stories, using three topics to guide their narrative: time invested, work invested and power dynamics at KHI. Parents and medical experts felt a new hope for (their) children with IKH when working for KHI but they also felt pressured to work at all hours and at the cost of time with their families or their own health. The stories revealed that parents felt less important compared to medical experts, but also that the relationship between parents and experts changed from the parent being taught by the expert, to the expert starting to learn from the lived experience of the parent. To make these collaborations successful we plead for funding for patient-led organisation and ethical guidelines to safeguard volunteers (both medical and lay people).

Establishing and sustaining authentic organizational partnerships in childhood disability research: lessons learned.

There is an increased interest from both researchers and knowledge users to partner in research to generate meaningful research ideas, implement research projects, and disseminate research findings. There is accumulating research evidence to suggest the benefits of engaging children/youth with disabilities and their parents/families in research partnerships; however, less is known about the benefits of, and challenges to, engaging organizations as partners in research. The purpose of this commentary is to reflect on successful organizational partnership experiences from the perspectives of researchers at an internationally-recognized childhood disability research centre (CanChild), and to identify and share key ingredients for developing partnerships between organizations and academic institutions. A companion study is underway to examine partnership experiences with CanChild from the partners' perspective. Four CanChild researchers and two co-facilitators participated in a collaborative auto-ethnography approach to share experiences with organizational research partnerships and to reflect, interpret, and synthesize common themes and lessons learned. The researchers and facilitators met virtually via Zoom for 105 min. Researchers were asked to discuss the following: the formation of their organizational partnerships; if/how partnerships evolved over time; if/how partnerships were sustained; and lessons learned about benefits and challenges to building research partnerships with organizations. The meeting was recorded, transcribed verbatim, and analyzed by the facilitators to identify and synthesize common experiences and reflections. Multiple rounds of asynchronous reflection and feedback supported refinement of the final set of analytic themes. Researchers agreed that partnerships with organizations should be formed through a mutual interest, and that partnerships evolved by branching to include new organizations and researchers, while also involving trainees. Researchers identified the importance of defining roles and responsibilities of key individuals within each partnering group to sustain the partnership. Lessons learned from organizational partnerships included reciprocity between the partnering organization and academic institution, leveraging small pockets of funds to sustain a partnership over time, and building a strong rapport with individuals in a partnership. This commentary summarized lessons-learned and provided recommendations for researchers and organizations to consider when forming, growing, and sustaining research partnerships over time.

Researchers and people who use research findings are partnering to create research projects and share results. There are examples of children with disabilities and their families participating in research partnerships, but less is known about the involvement of healthcare organizations and community organizations as research partners. The purpose of this article is to share successful examples of partnership between organizations and a childhood disability research centre from the perspective of researchers. Four researchers and two facilitators met to reflect on their experiences with organizational research partnerships. They met online for 105 min using Zoom software. The researchers were asked to talk about how their partnerships with organizations were formed, how they grew over time, and how they were maintained. The meeting was recorded, and the facilitators took the researchers' experiences and summarized them into common messages. Everyone then read the summary on their own and added their ideas. This happened three different times until everyone agreed on one set of ideas. The researchers agreed that partnerships with organizations should be formed through common goals, that they should grow to include new partners and junior researchers, and that clear roles and responsibilities were needed to keep the partnership going. The experiences shared in this article are valuable to other researchers and organizations that are interested in forming research partnerships.

Leading co-production in five UK collaborative research partnerships (2008-2018): responses to four tensions from senior leaders using auto-ethnography.

BACKGROUND: Despite growing enthusiasm for co-production in healthcare services and research, research on co-production practices is lacking. Multiple frameworks, guidelines and principles are available but little empirical research is conducted on 'how to do' co-production of research to improve healthcare services. This paper brings together insights from UK-based collaborative research partnerships on leading co-production. Its aim is to inform practical guidance for new partnerships planning to facilitate the co-production of applied health research in the future. METHODS: Using an auto-ethnographic approach, experiential evidence was elicited through collective sense making from recorded conversations between the research team and senior leaders of five UK-based collaborative research partnerships. This approach applies a cultural analysis and interpretation of the leaders' behaviours, thoughts and experiences of co-production taking place in 2008-2018 and involving academics, health practitioners, policy makers and representatives of third sector organisations. RESULTS: The findings highlight a variety of practices across CLAHRCs, whereby the intersection between the senior leaders' vision and local organisational context in which co-production occurs largely determines the nature of co-production process and outcomes. We identified four tensions in doing co-production: (1) idealistic, tokenistic vs realistic narratives, (2) power differences and (lack of) reciprocity, (3) excluding vs including language and communication, (4) individual motivation vs structural issues. CONCLUSIONS: The tensions were productive in helping collaborative research partnerships to tailor co-production practices to their local needs and opportunities. Resulting variation in co-production practices across partnerships can therefore be seen as highly advantageous creative adaptation, which makes us question the utility of seeking a unified 'gold standard' of co-production. Strategic leadership is an important starting point for finding context-tailored solutions; however, development of more distributed forms of leadership over time is needed to facilitate co-production practices between partners. Facilitating structures for co-production can enable power sharing and boost capacity and capability building, resulting in more inclusive language and communication and, ultimately, more credible practices of co-production in research. We provide recommendations for creating more realistic narratives around co-production and facilitating power sharing between partners.

Autistic phenomenology: past, present, and potential future.

We are now at a transition point in autism conceptualisation, science, and clinical practise, where phenomenology could play a key role. This paper takes a broad view of the history of phenomenological perspectives on the autism concept and how this has evolved over time, including contemporaneous theory and methods. Early inquiry from a clinical perspective within the tradition of classical continental phenomenology, linked closely to the consideration of schizophrenia, is contrasted with emerging observations of child development and a period in the second half of the twentieth century of scientific inquiry into a behavioural autistic phenotype where there was little or no phenomenological aspect; a phenotype that has determined the recent scientific and clinical conceptualisation of autism within current nosology. We then mark a more recent reawakening of interdisciplinary interest in subjective experience and phenomenological inquiry, which itself coincides with the increasing prominence and salience of the neurodiversity movement, autistic advocacy, and critical autism studies. We review this emerging phenomenological work alongside a contemporaneous clinical phenomenology perspective and representations of autistic experience from within the extensive literature (including life writing) from autistic people themselves; all perspectives that we argue need now be brought into juxtaposition and dialogue as the field moves forward. We argue from this for a future which could build on such accounts at a greater scale, working toward a more co-constructed, systematic, representative, and empirical autistic phenomenology, which would include citizen and participatory science approaches. Success in this would not only mean that autistic experience and subjectivity would be re-integrated back into a shared understanding of the autism concept, but we also argue that there could be the eventual goal of an enhanced descriptive nosology, in which key subjective and phenomenological experiences, discriminating for autism, could be identified alongside current behavioural and developmental descriptors. Such progress could have major benefits, including increased mutual empathy and common language between professionals and the autistic community, the provision of crucial new foci for research through aspects of autistic experience previously neglected, and potential new supportive innovations for healthcare and education. We outline a programme and methodological considerations to this end.

Two Sisters Family Histories: Self-In-Transit.

Departing from meanings of experiences and experiencing, of memory and poetics, the aim of this article was to describe and analysis the experience of the encounter of two sisters by means of a common ground represented by family narratives. It was based on collaborative auto ethnography. The study involved two sisters that lost their parents and home. The older sister - I-conserved memories of her parents and house; the little one, did not. The main conclusion was that my sister and I constructed narratives that signal something common to both: pointing to the origin in family history.

A Feminist Ethic of Care for the Veterinary Profession.

I can still see the dog's face as its eyes connected with mine, framed by the black bin bag it had been carried in. I can still hear the clicking sound, louder than the animal's shrill cries, made by a mass of maggots moving against one another beneath the dogs matted fur, moistened by fluids leaking from its damaged flesh. My hands were shaking with panic and rage and I could hardly draw up the euthatal into the syringe quickly enough. I wanted to put an end to this, immediately. As the lethal fluid flowed into the tiny vein the dog's body finally relaxed. At my hand, like so many others, she had ceased to exist. Through the window I could see her owners waiting outside in the sunshine to pay me and I thought about the silky feel of the fur which covered an expensively shaped head. I knew this dog was loved once. This paper develops two neglected areas of veterinary thought; anthropological studies of the veterinary profession and feminist care approaches in veterinary ethics. I argue that the development of veterinary anthropology is crucial to advancing our understanding of veterinary lived experiences, through highlighting the previously under acknowledged emotional, relational and contextual realities of veterinary practice. I further propose that an ethic of care for the veterinary profession, which meaningfully connects with veterinary lived experiences, may provide a valuable approach through which to further develop veterinary ethical thinking. I share an autoethnographic account of a difficult veterinary encounter, which I then analyse using a novel feminist care approach. Through analyses centered on both emotional and relational aspects of veterinary care, I challenge the boundaries of traditional veterinary ethical approaches in terms of the scope, scale and complexity of veterinary ethical decision making. I describe the concept of emotional sponge work in veterinary practice and outline its potential impact for advancing understanding of both veterinary well-being and the profession's societal role. Finally, I propose that a feminist ethic of care might provide a framework for redefining the focus of veterinary professional responsibility, beyond animal health and toward the maintenance of healthy relationships between humans and animals.

An ethic of care? Academic administration and pandemic policy.

This reflexive essay examines the adoption of an intentional 'ethic of care' by social work administrators in a large social work school located in the Pacific Northwest. An ethic of care foregrounds networks of human interdependence that collapse the public/private divide. Moreover, rooted in the political theory of recognition, a care ethic responds to crisis by attending to individuals' uniqueness and 'whole particularity.' Foremost, it rejects indifference. Through the personal recollections of one academic administrator, the impact of rejecting indifference in spring term 2020 is described. The essay concludes by linking the rejection of indifference to the national political landscape.

Building a culture of engagement at a research centre for childhood disability.

BACKGROUND: Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. METHODS: This study is based on ethnographic research methodology and combines elements of organizational ethnography, interviews, and collaborative auto-ethnography with parent partners, researchers, staff, and trainees. RESULTS: Since the inception of CanChild Centre for Childhood Disability Research at McMaster University in 1989, parents have been involved in research studies. Over time, this involvement evolved from being consulted on research studies to undertaking decision-making roles as partners and most recently as co-principal investigators. A growing infrastructure fosters a community of engagement that goes beyond the individual research study, and often beyond CanChild. This infrastructure consists of training, knowledge mobilization and social networking. In addition, the "softer" building blocks of CanChild's culture of engagement are an openness to learning from others, a commitment to relationship building, and a drive to grow and improve. These values are espoused by the leadership and are instilled in the next generation of researchers to inform both research and clinical work. While some challenges should be acknowledged when researchers and family partners work together on research studies, we identify a number of strategies that we have used in our studies to foster authentic and meaningful family-researcher partnerships. CONCLUSION: Engaging patients and families as partners in research constitutes a culture shift in health research, whereby studies about patients and families are carried out with them. Developing a community of engagement that transcends an individual research study is a step towards creating a culture of research that is truly shaped by the people about whom the research is being done.

More and more patients and family members are getting involved in health research studies as partners. However we do not know much about what happens after the research study ends. This article looks at how parents have been involved in research studies at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. CanChild researchers, staff, students and parents were asked about their experiences of working together on research studies. One of the researchers then pooled together all of these stories, shared them with everyone to get their feedback, and wrote the initial draft of this article. All the people interviewed were invited to read the article and to add their thoughts and opinions until everyone was satisfied with the final product. Our shared stories show that a lot has changed since CanChild was established in 1989. At first, researchers consulted with parents when they were doing a study. Now, many parents are partners and co-principal investigators on research studies. CanChild has also developed opportunities for parents and researchers to get training in patient-family engagement and to network with each other outside of research studies. Researchers, staff, students and parents talked about what makes research partnerships successful, including: being open to learning from each other; taking the time to get to know each other as people; and always trying to do better. They also shared some of the challenges that come up on research studies and suggested strategies for working through them.