Genevieve Currie

Caregiver experiences of caring for a child with lifelong care needs reveal health, social, and financial inequities for the child and their family. Barriers that exist in health care, disability, and community-based supports often lead to inequities in health care, social participation and inclusion, social roles, and economic security. There is a need to understand inequities of caring for children with lifelong care needs to inform health and social care policy and nursing practice. Insufficient system support keeps caregivers struggling with unrealistic care responsibilities and health, social and financial inequities. This study aimed to explore these inequities by posing the following research question: What are the care-related responsibilities, challenges, and support needs for caregivers of children and young adults with lifelong care needs? This article reports on the qualitative component of a larger study based on multiple method design. Twenty-one caregivers took part in interviews to describe their experiences, challenges and needs. Thematic analysis was used to describe caregiver experiences in the following areas: a) termination of supports across all areas of life; b) indefinite extreme care work; and c) growing isolation with an uncertain future. In summary, the lack of understanding of families caring for children with lifelong care needs prohibits advancement of further research, strategies and policies. This knowledge can inform future development and access to effective supports from nursing and other health care providers, as well as policy solutions for families across health, social, and economic domains.

We live in a social world, where we continuously interact with others in ways that often require response. In this article, we elucidate the transformative role of response communities when undertaking participatory research methods using narrative inquiry. Specifically, we examine how the features intrinsic to response communities—grounded in narrative inquiry methodology—have shaped our care, research practices and transition to scholarship. As we became a response community we felt a sense of belonging to something larger than ourselves as a way to uphold the touchstones or guideposts of narrative inquiry. We joined a community of scholars who embraced relationality and engaged with participants as they lived, told, re-lived and retold narratives of everyday experience. In this article, we share conversations and memories of our dialogues and reflections as researchers within our response community. We delve into three central features of response communities: playfulness, the multiplicity of tensions, and the capacity to imagine otherwise. We link these features to a sense of care and belonging that were instrumental when using participatory research methods.

Background: The Canadian Association of Schools of Nursing (CASN) Community Health Nurse Educators Interest Group has witnessed an erosion of community/population health content in baccalaureate curricula across Canadian schools of nursing in the last decade. A scarcity of community practice placements during the COVID-19 pandemic, with schools opting to prioritize acute care opportunities for students, exacerbated an erosion in practice hours for this important component of baccalaureate nursing education. Community nursing educators across Canada are greatly concerned by the reduction of nursing education content and relational practice framed in health equity; social, ecological, and structural determinants of health; and intersectionality, which are vital to nursing and the health of Canadians. With these concerns in mind, the purpose of this study was to gain an understanding about the current state of community health/population health theoretical and practice education in baccalaureate nursing programs in Canada. Method: A cross-sectional survey using open- and closed-ended questions was administered to all accredited nursing programs across Canada in November 2021. Quantitative data were analyzed using descriptive statistics, and qualitative data were analyzed using Clarke and Braun’s (2021) thematic analysis. Results: Data were analyzed from 28 completed surveys submitted from nine provinces. The results showed that community health nursing (CHN) theory and practice opportunities are delivered across all four years of baccalaureate nursing curricula. There is a diversity among the practice experiences, hours, and theoretical frameworks in CHN education. The precarity of community placements and limited opportunities for CHN practice education is a major concern. A variety of simulation opportunities are increasingly being used in schools of nursing in response to this and the COVID-19 pandemic. CHN standards and competencies provide the needed structure and outcomes for nursing programs. Conclusion: The survey was identified as a helpful way for CHN educators to have their voices heard regarding the troubling trend of eroding CHN education in baccalaureate nursing programs. Given the findings, there is a need for continued advocacy and leadership for CHN education’s place within accredited baccalaureate programs. CHN champions and CHN faculty are needed to advocate for and facilitate quality CHN education opportunities. The development of partnerships with community practice sites and the support for student learning in community health provide transformational experiences for students with diverse populations. These experiences supported the development of learning cultural safety, working with diverse populations, and inclusive practice. However, there was a strong message of concern about the erosion and devaluing of CHN education in Canada—necessitating timely advocacy and collaborative strategizing in order to remedy this troubling trend.

Daily experiences of mothers caring for children with Prader-Willi syndrome (PWS) are largely unknown and unvoiced. Knowledge of PWS has generally focused on pathology of the disorder. This emphasis overlooks the challenging moments of everyday life caring for children with PWS. Storied accounts of mothers caring for children with PWS offer expanded narratives to medicalized descriptions of experience. An understanding of everyday challenges in managing physical and mental health issues of PWS including hyperphagia and anxiety may create shifts in social and clinical perspectives. This understanding could improve practices in health and social care for families with PWS. This narrative inquiry studied everyday experience using storied accounts. Participants were mothers caring for children aged 3–17 years with genetically confirmed PWS who were experiencing hyperphagia. Four participants were recruited, and each interviewed 8–12 times over 12 months. Field texts and narrative accounts were co-composed through a collaborative process of analysis. Engaging with participants’ day-to-day experiences offered insights into their work of nurturing, caring, and contributing to the care of a child with PWS. Narrative threads focused on complexity and rarity and include the desire to be normal, how ordinary becomes extraordinary, isolation, behaviors and normative standards, and alternative stories of mothering. Recommendations for practice and policy include (a) challenges of mothering a child with complexity, (b) moving beyond functionality and impairment to participation and quality of life, (c) re-storying narratives and supports for families, and (d) engaging with mothers to determine care priorities.

ObjectiveTo describe the solutions community health nurses (CHNs) identify to address health inequities during the COVID-19 pandemic and to explore what leadership competencies enable CHNs to enact these solutions.DesignOnline survey, distributed to all members of the Community Health Nurses of Canada and associated provincial and territorial networks.ParticipantsInclusion criteria included all nurses who were working during the COVID-19 pandemic in Canada. A total of 245 responses were included in the analysis.MeasurementThe survey included 25 open ended and fixed response questions. Descriptive statistics were used to describe the quantitative data. Framework Analysis was used to analyze the qualitative data.ResultsSolutions focused on advancing health equity and expanding community relationships and partnerships were identified as priorities. To enact these solutions system transformation, engaging others, and developing coalitions were identified as the main leadership competencies required by CHNs.ConclusionParticipants in this study clearly articulated structural and process solutions to address health inequities among priority populations during the pandemic. CHNs described with practice knowledge and confidence that solutions enacted in system transformation with community partners are necessary to advance health equity.

Mothers’ experiences of caring for children with Prader-Willi Syndrome (PWS) is largely unknown. With no treatment for PWS, parents undertake (extra)ordinary care practices to keep children safe from overeating and self harm. Knowledge of these care practices could lead to effective interventions. Narrative inquiry was used to study everyday experience with Canadian mothers. Participants cared for a child 3 to 17 years old who had hyperphagia. Participants were interviewed 8 to 12 times each over the course of a year. Narrative accounts were co-composed through a collaborative process of analysis. Engaging with participants’ everyday experiences amplified complex care needs for families and gaps in health and social care systems. Narrative threads focused on engaging in (extra)ordinary care practices, rigid care work to keep children healthy and safe, tension from others while enacting these care practices, and difficulty conforming to social expectations with childrearing and care work. Recommendations for practice and policy include (a) shifting from untenable care practices, (b) reconceptualizing care work, and (c) alternative care models.

Background: The COVID‐19 pandemic and subsequent public health restrictions created significant challenges for children with neurodevelopmental disabilities with medical complexity and their caregivers including restrictions in care coordination for children and their families. Care coordination enhances families' skills in accessing and coordinating medical, education and disability care across sectors and systems.Objective: This study examined the implications of pandemic restrictions on care coordination from caregiver perspectives. These experiences can inform emergency preparedness planning and recovery strategies.Method: A qualitative descriptive design was utilized to explore and describe the experience of caregivers of children with neurodevelopmental disabilities and medical complexity. Nineteen caregivers were interviewed about their experience with care coordination during the pandemic.Findings: Caregiver experiences of care coordination during the pandemic highlighted the importance of care coordination during a public health emergency. Two themes emerged: (1) disruptions to care coordination from initial COVID‐19 restrictions leading to lack of access to supports and services, increasing level of need, and impacts of disruption for caregivers and children; and (2) adaptation and responsiveness to COVID‐19 restrictions by advocating for families and managing uncertainties.Recommendations: Recommendations include recognition of care coordination as a protective factor, designation as an essential service and sustained or increased funding for care coordination during emergencies. Families should be engaged in identifying care needs during care coordination, including during public health emergencies.

The core values of community health nursing practice are rooted in the social determinants of health, health equity and social justice. Throughout the COVID-19 pandemic, community health nurses (CHNs) witnessed first-hand the impact on individuals in situations of marginalization. This research inquiry explored how health inequities among client populations contributed to experiences of MD among CHNs in Canada during the pandemic. A total of 245 CHNs from across Canada participated in an online survey. Participants reported that during the pandemic individuals living in situations of marginalization were disproportionately impacted. CHNs were unable to provide the necessary health promotion interventions and experienced high levels of moral distress. The negative impact of the pandemic on individuals living in situations of marginalization illuminated the intersecting social and structural inequities that drive negative health outcomes and emphasized the need to adopt an equity focus for current and future pandemic planning, response, and recovery.

Purpose: The experiences of parents caring for the complex care needs of children with rare neurodevelopmental disorders are not well understood. Parents struggle to meet their children’s medical, behavioural, and social needs within and across health, social, and family systems. The purpose of this study was to explore the parents’ experience of caring for medical and social care needs for children with rare neurodevelopmental disorders. Methods: Hermeneutic phenomenology was used for the data analysis. Fifteen parents participated in semi-structured interviews. Results: Interpretive analysis revealed four insights: (a) difference in children’s behaviours and disease manifestations led to misunderstanding and vulnerability within social domains, (b) social taboo and stigma were experienced with rarity, (c) fragmented disconnected care from health and social systems impacted families, and (d) incomprehension from friends and family occurs when managing daily care. Conclusion: New interpretations and increased understanding of parents’ experiences are required in supporting parents caring for children with complex needs. Understanding parents’ experiences could reduce social isolation and exclusion, and mitigate appropriate and supportive practices and services within and across medical, social, and family systems.

Background: Parent experiences of caring for children with neurodevelopmental disease have been silenced and constrained by social, political and health influences. There is a need to co‐construct new meanings and interpretations of parenting a child with complex disabilities by having an increased understanding of the struggles and barriers for parents.Methods: A hermeneutic phenomenology approach was applied in this inquiry. Fifteen parents of children with rare neurodevelopmental diseases participated in semi‐structured interviews.Results: Parents experienced silencing or being silenced within interactions with health‐care and social care systems and providers. Interpretive thematic analysis revealed three insights: (a) parents experience a sense of disconnect and silencing as little is known or understood by health‐care providers about the experience of caring for children at home; (b) parents make strong efforts to be heard and acquire services within health and social systems as fighters, saviours and navigators; and (c) parents sacrifice themselves to the caregiving role and become therapists and caregivers to their medically fragile children at the cost of losing themselves as parents.Conclusion: An understanding of parents’ experiences in caring for a child with a rare neurodevelopmental disease may provide insight to systemic health and social support challenges faced by families and mitigate appropriate and supportive policies and services.