Needs of children with neurodevelopmental disorders and medical complexity: Caregiver perspectives.

BACKGROUND: Caregivers of children with neurodevelopmental disorders and medical complexities (NDD-MC) coordinate care across complex multisectoral systems. Often NDD-MC children have complex behaviors, however there is limited information on coordination needs for families. AIM: The objective of this mixed methods study was to understand the needs of families with NDD-MC children. METHODS AND PROCEDURES:  This sequential exploratory study obtained the perspectives of 67 caregivers of NDD-MC children using semi-structured interviews and validated questionnaires to measure family quality of life, care integration, and resource use. An adapted model using Maslow's hierarchy of needs was integrated, to understand the impacts of caregiving on quality of life. OUTCOMES AND RESULTS: Lack of support in caring for NDD-MC children negatively impacted family quality of life, resulting in various unmet needs, including caregiver burden, behavioural challenges, financial losses, and mental health issues. Caregivers dealt with a fragmented healthcare system that offered limited support to address coordination challenges. CONCLUSIONS AND IMPLICATIONS: The implementation of a needs-based care coordination program is recommended to consider the health, educational, and social needs of NDD-MC children and their families. Effective care for children with complex needs should tailor support for families using Maslow's hierarchy to enhance quality of life.

Building a strong public health nursing workforce in Canada: A continuing education solution.

Building a strong public health nursing (PHN) work-force capable of advancing population health and reducing inequities is critical. Though undergraduate nursing education is expected to provide introductory knowledge and practice of PHN in Canada, this is not always sufficient to adequately prepare nursing graduates for the complexity of PHN practice. To be practice ready for the full scope of PHN roles and interventions, new baccalaureate nurses and new registered nurses in public health are required to apply PHN competencies, theory, and knowledge of nursing and public health sciences, and to practice within the mandates of provincial and territorial public health legislation. To advance practice readiness a formal continuing education program is essential to foster these critical roles in PHN. This article describes the development of a postgraduate continuing education program for preparation to practice in PHN.

"Unable to Feed My Hungry Child": Experiences of Mothers Caring for Children With Prader-Willi Syndrome.

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.

Mothering a Child With Complexity and Rarity: A Narrative Inquiry Exploring Prader-Willi Syndrome.

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.

Community health nurses leadership in advancing health equity.

OBJECTIVE: To 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. DESIGN: Online survey, distributed to all members of the Community Health Nurses of Canada and associated provincial and territorial networks. PARTICIPANTS: Inclusion criteria included all nurses who were working during the COVID-19 pandemic in Canada. A total of 245 responses were included in the analysis. MEASUREMENT: The 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. RESULTS: Solutions 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. CONCLUSION: Participants 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.

Measure what matters: considerations for outcome measurement of care coordination for children with neurodevelopmental disabilities and medical complexity.

Introduction: Care Coordination (CC) is a significant intervention to enhance family's capacity in caring for children with neurodevelopmental disability and medical complexity (NDD-MC). CC assists with integration of medical and behavioral care and services, partnerships with medical and community-based supports, and access to medical, behavioral, and educational supports and services. Although there is some consensus on the principles that characterize optimal CC for children with NDD-MC, challenges remain in measuring and quantifying the impacts of CC related to these principles. Two key challenges include: (1) identification of measures that capture CC impacts from the medical system, care provider, and family perspectives; and (2) recognition of the important community context outside of a hospital or clinical setting. Methods: This study used a multilevel model variant of the triangulation mixed methods design to assess the impact of a CC project implemented in Alberta, Canada, on family quality of life, resource use, and care integration at the broader environmental and household levels. At the broader environmental level, we used linked administrative data. At the household level we used quantitative pre-post survey datasets, and aggregate findings from qualitative interviews to measure group-level impacts and an embedded multiple-case design to draw comparisons, capture the nuances of children with NDD-MC and their families, and expand on factors driving the high variability in outcome measures. Three theoretical propositions formed the basis of the analytical strategy for our case study evidence to explore factors affecting the high variability in outcome measures. Discussion: This study expanded on the factors used to measure the outcomes of CC and adds to our understanding of how CC as an intervention impacts resource use, quality of life, and care integration of children with NDD-MC and their families. Given the heterogeneous nature of this population, evaluation studies that account for the variable and multi-level impacts of CC interventions are critical to inform practice, implementation, and policy of CC for children with NDD-MC.

Care coordination of children with neurodevelopmental disabilities and medical complexity during the COVID-19 pandemic: Caregiver experiences.

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.

Children with Disabilities in Canada during the COVID-19 Pandemic: An Analysis of COVID-19 Policies through a Disability Rights Lens.

Children with disabilities were especially vulnerable during the COVID-19 pandemic, and policies designed to mitigate its effects were limited in addressing their needs. We analyzed Canadian policies related to children with disabilities and their families during the COVID-19 pandemic to identify the extent to which these policies aligned with the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) and responded to their mental health needs by conducting a systematic collection of Canadian provincial/territorial policies produced during the pandemic, building a categorization dictionary based on the UN CRPD, using text mining, and thematic analysis to identify policies' alignment with the UN CRPD and mental health supports. Mental health was addressed as a factor of importance in many policy documents, but specific interventions to promote or treat mental health were scarce. Most public health policies and recommendations are related to educational settings, demonstrating how public health for children with disabilities relies on education and community that may be out of the healthcare system and unavailable during extended periods of the pandemic. Policies often acknowledged the challenges faced by children with disabilities and their families but offered few mitigation strategies with limited considerations for human rights protection.

Impacts of the COVID-19 Pandemic: Pan-Canadian Perspectives From Parents and Caregivers of Youth With Neurodevelopmental Disabilities.

INTRODUCTION: The COVID-19 pandemic brought unprecedented challenges for youth with neurodevelopmental disabilities (NDD) and their families. Although health measures were implemented to contain the COVID-19 virus, they disrupted public service, profoundly impacting youth and their families' access to services. This study sought to better understand the perspectives and experiences of parents and caregivers of youth with NDD across Canada in accessing services and their mental health needs during the pandemic. METHOD: The study used a qualitative research design in which we interviewed 40 parents and caregivers across Canada. RESULTS: The results enabled us to understand the impact of service disruptions in significant areas of life, including health, education, employment, and risk mitigation. DISCUSSION: Policymakers must consider a disability-inclusive lens during public health emergency planning and response to reduce the disproportionate impacts faced by youth with NDD and their families.

Developing simulation games to advance public health nursing competence in baccalaureate education.

We describe the development of an innovative baccalaureate nursing education strategy for public health nursing. Virtual simulation pedagogy is known to be effective for acute care nursing practice while less known for public health nursing. Three Canadian nursing schools, the Canadian Association of Schools of Nursing (CASN), and the Canadian Alliance of Nurse Educators using Simulation (CAN-Sim) partnered to develop three public health nursing virtual simulation games. Learners work through unfolding population health scenarios, simulating public health nursing practice focused on entry level public health nursing competencies. Each game fosters clinical reasoning and collaborative, community decision-making to respond to population health issues during community assessment, evidence-informed health promotion planning, and evaluation processes. A companion guide was developed to support best practices in implementing virtual simulation and promote optimum student learning using the public health nursing games.

Mental health challenges during COVID-19: perspectives from parents with children with neurodevelopmental disabilities.

BACKGROUND: The global pandemic and subsequent denials, delays, and disruptions in essential daily activities created significant challenges for children with neurodevelopmental disorders (NDDs) and their parents. Public health restrictions during the COVID-19 pandemic limited access to supports and services required by children with NDDs to maintain their health and well-being. OBJECTIVE: This study sought to understand the impacts of these public health measures and restrictions on mental health from the perspective of parents with children with NDDs to inform pathways for public health policies responsive to the needs of this population. METHOD: Interpretive descriptive design was used to guide data collection and data analysis. Forty caregivers were interviewed about their experience with pandemic restrictions. FINDINGS: Generic policy measures contributed to many gaps in families' social support systems and contributed to mental health challenges for children and their parents. Four themes emerged: 1) lack of social networks and activities, 2) lack of access to health and social supports, 3) tension in the family unit, and 4) impact on mental health for children and their parents. RECOMMENDATIONS: Emergency preparedness planning requires a disability inclusive approach allocating resources for family supports in the home and community. Families identified supports to minimize further pandemic disruptions and enhance recovery.

Advancing Excellence in Community Health Nursing Through Evidence-Based National Standards of Practice.

BACKGROUND: Current standards of practice are necessary to ensure safe nursing practice in Canada and across the world. This article aimed to describe and present findings from the rigorous review process undertaken to update the 2011 Canadian Community Health Nursing Standards of Practice. METHOD: A revision process included a scoping review of the literature, focus groups, and a modified Delphi method. RESULTS: Through the inclusive consultation process, 495 community health nurses enhanced the content of the standards with respect to cultural safety, cultural humility, Indigenous health and ways of knowing, health equity, and evidence-informed practice. CONCLUSION: This comprehensive revision process can guide other nursing specialty groups developing or revising specialized practice standards in Canada and across the world. [J Contin Educ Nurs. 2021;52(4):168-175.].

Planting seeds of community-engaged pedagogy: Community health nursing practice in an intergenerational campus-community gardening program.

As part of a participatory action research (PAR) study, nursing student participants collaborated with faculty, along with older adults, people with mixed abilities, and preschool aged children in order to 'sow the seeds of social change' and grow a campus community gardening project. The focus of this article is on the community-engaged pedagogy within a community health nursing practice course that supported student learning. Insights were gleaned over the course of four academic semesters (and four student cohort groups) with students as co-developers of the campus-community garden and participants in the PAR. Key themes emerged from student participants in the PAR process including: (1) planning in community to "think global, act local"; (2) discovering 'the people in your neighbourhood' as socially just partnerships; (3) revisiting landscapes of social inclusion; and (4) reflecting on "humble togetherness" across generational gaps. The findings showcased here attest to how community-engaged pedagogy, in conjunction with PAR, can facilitate student learning outside of traditional settings and grow social inclusion, intergenerational connection, and social justice.

Social isolation and exclusion: the parents' experience of caring for children with rare neurodevelopmental disorders.

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.

Experiences, mental well-being and community-based care needs of fathers of late preterm infants: A mixed-methods pilot study.

Aims: We explore fathers' experience of caring for a late preterm infant including their stressors, needs and corresponding interventions proffered by public health nurses. Design: Pilot mixed-methods exploratory sequential design. Methods: We collected (a) qualitative data from semi-structured interviews (N = 5) and (b) quantitative data (N = 31) about fathers' levels of stress (Parenting Stress Index), anxiety (Speilberger State-Trait Anxiety) and depression (Edinburgh Postnatal Depression Scale) at 6-8 weeks after birth of their infant. Results: Fathers appreciated their infant was born 'early', however, discovered through experience the demands of their infant, which appeared as stress (child and parent domains) and anxiety. Themes: hypervigilance in care explained the fathers' sense of competency and role restriction; infant fatigue and parental feeding elucidated the stressful aspect of father-infant interaction. Unscientific advice from healthcare providers was confusing and frustrating while uncertainty of rehospitalization caused worries, fears or stress. One father experienced depressive symptoms.

'It would be much easier if we were just quiet and disappeared': Parents silenced in the experience of caring for children with rare diseases.

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.

"It is like a jungle gym, and everything is under construction": The parent's perspective of caring for a child with a rare disease.

DESCRIPTIVE TITLE: Parents of children with rare diseases face pervasive challenges in meeting medical and social care needs. Existing research on the parents' experience of caring for a child with a rare disease is limited. This paper offers suggestions for better supporting families living with rare disease as well as possible avenues of future research. BACKGROUND: Parents of children with rare diseases face pervasive challenges in meeting medical and social care needs. Existing research on the parent's experience of caring for a child with a rare disease is limited. METHODS: An interpretive phenomenological approach was applied in this inquiry. Fifteen parents of children with rare diseases participated in semistructured interviews. RESULTS: Interpretive thematic analysis revealed that due to the rarity of the disease and an overall lack of knowledge of the disease, there is an increase in the burden on the family in relation to "rarity" in addition to "disability." Four insights were also revealed: (a) Parents often know more about the disease then Health Care providers, and this leads to entanglements in communication and collaboration as experts and parents; (b) there is lack of coordination of care between providers and services caring for children with rare diseases; (c) there is a gap in accessibility to government supports; and (d) due to fragmented care, parents must fill the aforementioned gaps by juggling multiple roles including that of advocate, case manager, and medical navigator. CONCLUSION: This paper offers suggestions for better supporting families living with rare disease as well as possible avenues of future research.

Caring for late preterm infants: public health nurses' experiences.

BACKGROUND: Public health nurses (PHNs) care for and support late preterm infants (LPIs) and their families when they go home from the hospital. PHNs require evidence-informed guidelines to ensure appropriate and consistent care. The objective of this research study is to capture the lived experience of PHNs caring for LPIs in the community as a first step to improving the quality of care for LPIs and support for their parents. METHODS: To meet our objectives we chose a descriptive phenomenology approach as a method of inquiry. We conducted semi-structured interviews with PHNs (n = 10) to understand PHN perceptions of caring for LPIs and challenges in meeting the needs of families within the community. Interpretative thematic analysis revealed PHN perceptions of caring for LPIs and challenges in meeting the needs of families within the community. RESULTS: Four themes emerged from the data. First, PHNs expressed challenges with meeting the physiological needs of LPIs and gave voice to the resulting strain this causes for parents. Second, nurses conveyed that parents require more anticipatory guidance about the special demands associated with feeding LPIs. Third, PHNs relayed that parents sometimes receive inconsistent advice from different providers. Lastly, PHNs acknowledged that due to lack of resources, families sometimes did not receive the full scope of evidence informed care required by fragile, immature infants. CONCLUSION: The care of LPIs by PHNs would benefit from more research about the needs of these infants and their families. Efforts to improve quality of care should focus on: evidence-informed guidelines, consistent care pathways, coordination of follow up care and financial resources, to provide physical, emotional, informational support that families require once they leave the hospital. More research on meeting the challenges of caring for LPIs and their families would provide direction for the competencies PHNs require to improve the quality of care in the community.

Mother's level of confidence in caring for her late preterm infant: A mixed methods study.

AIM AND OBJECTIVES: To examine what it means to be a mother of a late preterm infant including a mother's level of confidence in caring for her late preterm infant over time and the effect of maternal depression of this experience. BACKGROUND: Little is known about mothers' experiences of caring for their late preterm infants in the community, including their level of confidence and parenting stress within the context of a supported care environment by public health nurses. DESIGN: A mixed methods study, sequential explanatory quantitative and qualitative study. METHODS: A convenience sample of mothers with LPIs (n = 71) completed questionnaires on maternal confidence (3-4 weeks and 6-8 weeks), parenting stress (6-8 weeks), social support (6-8 weeks) and postpartum depression (6-8 weeks). A purposive sample of mothers (n = 11) underwent in-depth, semi-structured interviews. RESULTS: Maternal confidence decreased from 3-4 weeks-6-8 weeks after delivery, and similar results were found for mothers who reported depressive symptoms. Narratives of the mothers suggested the decrease in maternal confidence over time was influenced by the demanding characteristics of the late preterm infant, the prospect of their rehospitalisation and the mother's reported interactions with public health nurses. Depression had an effect on maternal confidence; that is, the depressed mothers demonstrated less confidence about their caretaking role than the nondepressed mothers at 6-8 weeks. Mothers did not discuss mental health issues, which may reflect the protective effects of social support on emotional instability or an inability to recognise postpartum depression. CONCLUSION: The confidence of mothers with LPIs decreased over the first 2 months following delivery and being home with their infants. Assisting mothers to meet their personal needs and the needs of their infant should promote maternal skills, which will likely increase maternal confidence related to the care of their late preterm infant. RELEVANCE FOR CLINICAL PRACTICE: Characteristics of LPIs contributed more to parenting stress score than parent characteristics; mothers however attempted to normalise the late preterm infant in order to minimise the parenting stress. Evidence-informed brief interventions tailored based on late preterm infant and parent characteristics may improve maternal confidence over time. Healthcare professional should provide education and anticipatory guidance prior to discharge, consistent care in hospital and postdischarge as this may impact maternal level of confidence. Future research needs to examine standards of care for discharge of LPIs and adherence to these standards.

A qualitative study: Mothers of late preterm infants relate their experiences of community-based care.

PURPOSE: In Alberta, the high occurrence of late preterm infants and early hospital discharge of mother-infant dyads has implications for postpartum care in the community. Shortened hospital stay and complexities surrounding the care of biologically and developmentally immature late preterm infants heighten anxiety and fears. Our descriptive phenomenological study explores mothers' experience of caring for their late preterm infants in the community. METHODS: Eleven mothers were interviewed using a semi-structured interview guide. Interview transcripts were analysed using an interpretive thematic approach. FINDINGS: The mothers' hospital experience informed their perspective that being a late preterm infant was not a "big deal," and they tended to treat their infant as normal. "Feeding was really problem," especially the variability in feeding effectiveness, which was not anticipated. Failing to recognize late preterm infants' feeding distress exemplified lack of knowledge of feeding cues and tendencies to either rationalize or minimize feeding concerns. Public health nurses represent a source of informational support for managing neonatal morbidities associated with being late preterm; however, maternal experiences with public health nurses varied. Some nurses used a directive style that overwhelmed certain mothers. Seeing multiple public health nurses and care providers was not always effective, given inconsistent and contradictory guidance to care. These new and changing situations increased maternal anxiety and stress and influenced maternal confidence in care. Fathers, family, and friends were important sources of emotional support. CONCLUSION: After discharge, mothers report their lack of preparation to meet the special needs of their late preterm infants. Current approaches to community-based care can threaten maternal confidence in care. New models and pathways of care for late preterm infants and their families need to be responsive to the spectrum of feeding issues encountered, limit duplication of services, and ensure consistent and effective care that parents will accept.