Family physicians' moral distress when caring for patients experiencing social inequities: a critical narrative inquiry in primary care.

BACKGROUND: Family physicians (GPs) working with patients experiencing social inequities have witnessed patients' healthcare needs proliferate. Alongside increased workload demands fostered within current remuneration structures, this has generated concerning reports of family physician attrition and possible experiences of moral distress. AIM: To explore stories of moral distress shared by family physicians caring for patients experiencing health needs related to social inequities. DESIGN AND SETTING: A critical narrative inquiry, informed by the analytic lens of moral distress, conducted in Ontario, Canada. METHOD: Twenty family physicians were recruited through purposive and snowball sampling via word of mouth and email mailing lists relevant to addictions and mental health care. Physicians participated in two narrative interviews and had the opportunity to review the interview transcripts. RESULTS: Family physicians' accounts of moral distress were linked to policies governing physician remuneration, scope of practice, and the availability of social welfare programmes. These structural elements left physicians unable to get patients much needed support and resources. CONCLUSION: This study provides evidence that physicians experience moral distress when unable to offer crucial resources to improve the health of patients with complex social needs resulting from structural features of the Canadian health and social welfare system. Further research is needed to critically interrogate how health and social welfare systems around the world can be reformed to improve the health of patients and increase family physicians' professional quality of life, potentially improving retention.

How do perceptions of Covid-19 risk impact pregnancy-related health decisions? A convergent parallel mixed-methods study protocol.

INTRODUCTION: Pregnant people have a higher risk of severe COVID-19 disease. They have been disproportionately impacted by COVID-19 infection control policies, which exacerbated conditions resulting in intimate partner violence, healthcare access, and mental health distress. This project examines the impact of accumulated individual health decisions and describes how perinatal care and health outcomes changed during the COVID-19 pandemic. OBJECTIVES: Quantitative strand: Describe differences between 2019, 2021, and 2022 birth groups related to maternal vaccination, perinatal care, and mental health care. Examine the differential impacts on racialized and low-income pregnant people.Qualitative strand: Understand how pregnant people's perceptions of COVID-19 risk influenced their decision-making about vaccination, perinatal care, social support, and mental health. METHODS AND ANALYSIS: This is a Canadian convergent parallel mixed-methods study. The quantitative strand uses a retrospective cohort design to assess birth group differences in rates of Tdap and COVID-19 vaccination, gestational diabetes screening, length of post-partum hospital stay, and onset of depression, anxiety, and adjustment disorder, using administrative data from ICES, formerly the Institute for Clinical Evaluative Sciences (Ontario) and PopulationData BC (PopData) (British Columbia). Differences by socioeconomic and ethnocultural status will also be examined. The qualitative strand employs qualitative description to interview people who gave birth between May 2020- December 2021 about their COVID-19 risk perception and health decision-making process. Data integration will occur during design and interpretation. ETHICS AND DISSEMINATION: This study received ethical approval from McMaster University and the University of British Columbia. Findings will be disseminated via manuscripts, presentations, and patient-facing infographics. TRIAL REGISTRATION: Registration: Clinicaltrials.gov registration number: NCT05663762.

"I can't be the nurse I want to be": Counter-stories of moral distress in nurses' narratives of pediatric oncology caregiving.

As a term used in nursing and other health professions to describe when one is prevented by institutional constraints from pursuing the right course of action, moral distress has gained traction to examine the effects of restructuring on health and social care providers. Using a critical narrative methodology, this paper presents the counter-stories of nine pediatric oncology nurses in Ontario, Canada, whose stories illustrate the embeddedness of their caregiving and moral distress within institutional contexts that leave them stretched thin amongst multiple caregiving and administrative demands, and that limit their capacities to be the nurses they want to be. Informed by feminist philosophical theorizations of moral distress, we elucidate how the nurses' counter-stories: (i) re-locate the sources of their moral distress within institutional constraints that fracture their moral identities and moral relationships, and (ii) dis-locate dominant narratives of technological cure by ascribing value and meaning to the relational care through which they sustain moral responsibilities with patients and their families. By making visible the relational care that they find meaningful and that brings them in proximity to patients and families, these counter-stories assist nurses in restoring their damaged moral identities. This study demonstrates the power of identifying and mobilizing counter-stories in tracing and critically examining the conditions that structure nurses' experiences of moral distress. The findings add theoretical and empirical depth to contemporary understandings of moral distress and complement ongoing public discussion of burnout among nurses and other health care workers during the COVID-19 pandemic. These counter-narratives may act as resources for resistance among nurses, help to reduce the distance between management and health care workers, and catalyze changes in policy and practice so that nurses, and the full scope of their caregiving, are valued.

Drawing on experience: exploring the pedagogical possibilities of using rich pictures in health professions education.

In both clinical and health professions education research, rich pictures, or participant-generated drawings of complex phenomena, are gaining recognition as a useful method for exploring multifaceted and emotional topics in medicine. For instance, two recent studies used rich pictures to augment semi-structured interviews exploring trainees', health care professionals' (HCPs), and parents' experiences of difficult conversations in the Neonatal Intensive Care Unit (NICU)-an environment in which communication is often challenging, anxiety-provoking, and emotionally distressing. In both studies, participants were invited to draw a picture depicting how they experienced a difficult conversation in this setting. As part of the interview process, participants were asked to both describe how they engaged with rich pictures, and to share their perceptions about the affordances and limitations of this research method. Here, their perspectives are reported and the possibilities of using rich pictures to inform pedagogical innovations in health professions education and research are considered.

Translating developmental origins of health and disease in practice: health care providers' perspectives.

Currently, there is limited knowledge on how health care providers perceive and understand the Developmental Origins of Health and Disease (DOHaD), which may impact how they inform patients and their families throughout the perinatal period. This qualitative descriptive study explored if and how health care providers counsel on in utero programming and future health outcomes with parents, both preconception and during pregnancy. One-on-one, semi-structured interviews were conducted with 23 health care providers from varying health disciplines including obstetrics and gynaecology, midwifery, paediatrics, endocrinology and internal medicine. Audiotaped interviews were transcribed verbatim and analysed using inductive thematic analysis. Three themes were identified: Knowledge about DOHaD, Counselling on DOHaD in Practice Settings and Impact of DOHaD on Health. Health care providers not only expressed excitement over the potential health benefits of DOHaD counselling but also indicated barriers to knowledge translation, including a lack of knowledge among providers and a disconnect between basic scientists and practitioners. All health care providers expressed concerns on how and when to introduce the concept of DOHaD when counselling patients and called for the development of practice guidelines. Counselling on DOHaD needs to be framed in a way that is empowering, minimising the potential of coercion and guilt. More interaction and collaboration are needed between health care providers and researchers to identify strategies to support knowledge translation generated from DOHaD research into practice settings.

"There Is No Before Cancer There Is Only Cancer." Perceived Late Effects of Pediatric Cancer on Survivors.

BACKGROUND: Although "late effects" connotes experiencing effects later in life, they can emerge immediately after active treatment. The effects that survivors experience have been reported but rarely from the point of view of the survivors regarding their life after treatment. OBJECTIVE: To examine the perceived late effects of pediatric cancer on survivors and their self-identified primary support persons in order to understand the multifaceted nature of living after a pediatric cancer diagnosis. METHODS: Using a pragmatic interpretive phenomenology approach, 10 survivors of pediatric cancer (aged 21-28 years) and 9 of their support persons (aged 23-73 years) participated, completing background questionnaires and semistructured, one-on-one interviews. Interview transcripts were analyzed thematically. RESULTS: Both survivors and support persons acknowledged that survivors experienced negative physical and cognitive health outcomes that require follow-up care. Survivors acknowledged that their cancer experience and residual effects have changed the trajectory of their lives. CONCLUSIONS: Research on young adult survivors of pediatric cancer and the residual/late effects and emotional outcomes they experience is warranted. Longitudinal research can aid in understanding how effects develop or worsen over time. IMPLICATIONS FOR PRACTICE: The findings of this study support The Children's Oncology Group Long-term Follow-up Guidelines for practitioners. As the frontline caring for these individuals and families, nurses' involvement in transitional care out of treatment is necessary. Continued involvement and understanding of long-term pediatric cancer survivorship for nurses are also imperative for continuity for survivors and families.

Having a Sibling with ASD: Perspectives of Siblings and Their Parents.

The overall purpose of this research was to explore the experiences of families living with a child with autism spectrum disorder (ASD). This paper reports the experiences of siblings of children with ASD, from the perspective of both siblings and parents. Using a phenomenological case study design, participants completed face sheets to provide context for one-on-one, semi-structured interviews, which were transcribed verbatim, and verified via member checks. Van Manen's (1990) selective approach was used for data analysis. Siblings and parents described that the children with ASD made their siblings the targets of their aggression, and siblings spent less time with parents the children with ASD required more attention. It was also acknowledged that the siblings were more mature as a result of having a sibling with ASD. Families acknowledged that the relationship between children with ASD and their siblings would not differ if their children did not have ASD. This work highlights the importance of examining the family as a unit to provide a multifaceted perspective of how having a child with ASD affects their siblings.

The Balancing Act: Mothers' Experiences of Providing Care to Their Children With Cancer.

The effect of pediatric cancer and its treatment are overwhelming-these effects are multifaceted and felt by the entire family unit throughout the diagnosis and treatment process. Children experience a plethora of effects as a result of the treatment process; however, it is imperative to remember that a pediatric cancer diagnosis affects parents physically, emotionally, and psychologically as well. While much of the pediatric cancer treatment occurs at the hospital or in clinics, parents are often faced with additional caregiving responsibilities at home, and in many cases, it is mothers who provide care to their children, while also attempting to care for the siblings of their ill children. This secondary data analysis examines the caregiving responsibilities of mothers from Southern Ontario, Canada, during the time from diagnosis to after their children's pediatric cancer treatment. Three subthemes emerged from the overall theme of caregiving: (1) "We tried to do as much as we could outside of the clinic," (2) "I had to be there for everything," and (3) "Most of the time we relied on other people." Each will be discussed in turn. The findings from this work provides insight to health care professionals on how to create or improve the current supports and resources provided to caregivers of children with cancer.

Taking Lemons and Making Lemonade: Posttraumatic Growth From Pediatric Cancer.

PURPOSE: The purpose of this study was to examine the lived experiences of the perceived long-term effects of pediatric cancer on adult survivors and whether these effects had bearing on their primary support persons. DESIGN: This work was guided by van Manen's "new" interpretive phenomenology. METHODS: Ten survivors of pediatric cancer (aged 21-28 years) and 9 of their support persons (aged 23-73 years) were recruited. Background questionnaires were administered, and interviews were conducted. Field notes were collected, and member checks were administered for data credibility. RESULTS: A total of 4 themes emerged from this work; however, only the theme discussing posttraumatic growth will be discussed. Posttraumatic growth manifested in different ways, such as motivation for career or schooling choices, doing charity work, working with cancer organizations, or mentoring children undergoing pediatric cancer treatment. CONCLUSIONS: This work may provide comfort to other individuals with pediatric cancer knowing that they are not alone in their journeys. Healthcare providers should attempt to make pediatric cancer experiences as "normal" as possible for patients and their families and observe for signs of stress in their patients. As well, it is important for the pediatric cancer literature to illustrate that young adult survivors of pediatric cancer find positive outcomes in their experiences.

Who is a survivor? Perceptions from individuals who experienced pediatric cancer and their primary support persons.

PURPOSE: The purpose of this research was to examine the lived experiences of individuals who had cancer as children, as well as lived experiences of their current primary support persons. METHODS: Based on van Manen's "new" interpretive phenomenology, interviews were conducted with ten pediatric cancer survivors and nine of their support persons to gain a more holistic understanding of the pediatric cancer experiences of children and their families. RESULTS: Four themes emerged from the data; however, only the topic of the use of the term "survivor" and identification with the term will be discussed. All participants in the study described their personal definition of the term survivor and what it meant to be a survivor. Additionally, all individuals in the study discussed the concept of being a survivor and if they would consider themselves, or their loved ones, to be "survivors." CONCLUSIONS: The results of this study provide health care professionals, family members, and individuals fundraising or advocating for cancer causes with insights on how the term survivor may be interpreted. This study may provide insight to individuals who had cancer as children, in showing that their personal perspective shapes their identity; although "survivor" is common cancer vernacular, individuals can choose not to identify with their illness experiences.

"It Changed Everything. And Not All in a Bad Way": Reflections of Pediatric Cancer Experiences.

Pediatric cancer, otherwise known as childhood cancer, is devastating to both children and their families. All individuals in a family are often physically, psychologically, and socially affected. Using the qualitative theoretical orientation of interpretive phenomenology, interviews were conducted with 10 pediatric cancer survivors and 9 of their support persons to gain a more holistic understanding of the pediatric cancer experiences of children and their families. A total of 4 themes emerged from the data, however only the past experiences of the survivors and their recollection of their pediatric journeys will be discussed. Survivors experienced a variety of negative effects during and after treatment, while their support persons explained the emotional upheaval they experienced while caring for their children. Further, all individuals recalled positive memories throughout their journeys. The results of this study provide health care professionals and school administrators with insight into how to manage the difficult transitions children with cancer face when returning to school after cancer diagnosis and/or treatment. As well, this study may allow others undergoing similar journeys to relate to the lived experiences of the participants in this work.