Anxiety can create serious disruption in the life and mind of youth who are affected. Youth living with anxiety suffer a wealth of physical and psychological challenges, yet little is known about how ...anxiety influences the sense of the self. The purpose of this research was to explore the experience of the self in a sample of Canadian youth living with anxiety.
The qualitative research approach of hermeneutic phenomenology was used. The sample consisted of 58 Canadian youth with anxiety, 44 females and 14 males between the ages of 10 and 22. Youth took part in open-ended interviewing, ecomaps, and photovoice. Data analysis followed a staged process, informed by Max van Manen. All sources of data were included in the analysis to form thematic statements.
Entering into the lifeworld of youth revealed that they suffered deeply. A fractured sense of self underlined their experience, setting up for a great deal of self-scrutiny and a lack of self-compassion. They experienced a profound sense of responsibility for others at the loss of being-there-for-oneself. Navigating their social sphere presented an additional challenge. However, youth were genuinely interested in self-discovery through awareness and reflection.
The phenomenological accounts by youth on living with anxiety reinforce the challenges they experienced within themselves that give rise to a great deal of inner turmoil. Care and support to youth with anxiety requires an understanding of the ways in which the self may be fractured by their experiences with anxiety. Providing young people with an opportunity to share with others who had similar lived experiences can serve to contribute to a sense of healing for youth, while also providing a safe space in which young people can let down their guard and openly acknowledge or share their experiences without fear of stigmatization.
Little research attention has been given to understanding the lived experience of parents who access mental health services in the context of child anxiety disorders. This paper reports on findings ...specific to parents' lived experience of accessing services for their child living with anxiety and the recommendations they provided for improving access.
We used the qualitative research approach of hermeneutic phenomenology. The sample included 54 Canadian parents of youth living with an anxiety disorder. Parents took part in one semi-structured and one open-ended interview. We used a 4 staged data analysis process informed by van Manen's approach and Levesque and colleagues' framework of access to healthcare.
The majority of parents reported being female (85%), white (74%), and single parents (39%). Parents' ability to seek and obtain services was affected by not knowing when or where to access services, having to learn to navigate the system, limited availability of services, lack of timely services and interim supports, limited financial resources, and clinicians' dismissal of parental concerns and knowledge. Provider (ability to listen), parent (willingness to participate in therapy), child (same race/ethnicity as provider), and service characteristics (cultural sensitivity) influenced whether parents perceived services as approachable, acceptable, and appropriate. Parents' recommendations focused on: (1) improving the availability, timeliness, and coordination of services, (2) providing supports for parents and the child to facilitate obtaining care (education, interim supports), (3) improving communication with and among healthcare professionals, (4) the need to recognize parents' experience-based knowledge, and (5) encouraging parents to take care of themselves and advocate for their child.
Our findings point to possible avenues (parents' ability, service characteristics) that can be targeted to improve service access. As experts on their situation, parents' recommendations highlight priority needs of relevance to health care professionals and policymakers.
In this article, we discuss findings of a hermeneutic phenomenological study that sought to describe the experiences of parents who have a child with autism. Qualitative interviews were conducted ...with parents from 16 families of children with autism residing in a western Canadian province. “Living in a world of our own” emerged as the essence of the parents' experiences. In “living in a world of our own,” parents described a world of isolation. Three themes representing the essential challenging elements of the parents' experiences included vigilant parenting, sustaining the self and family, and fighting all the way. Although much is known about the fundamental importance of support to parents of children with chronic conditions and/or disabilities, findings from this study indicate that knowledge has not been adequately transferred to the care of children with autism.
Purpose: This mixed-methods systematic review synthesized findings from studies published between January 1, 2006 and July 31, 2018 on the social inclusion experiences of children with and without ...disabilities, as viewed from their own perspective, with a focus on how typically developing peers promote social inclusion.
Method: Forty-five studies met the inclusion criteria. Data from included studies were synthesized by means of content analysis.
Results: The findings detail the inner social inclusion experiences (e.g., feeling included, different) of children with disabilities and provide information regarding the influence of disability type (e.g., physical, social, affective) on typically developing peers' responses (e.g., acceptance vs. rejection), peers' explanations for social inclusion/exclusion, and peers' relationships with children with disabilities. Barriers to social inclusion, supports, as well as strategies used to promote social inclusion, as perceived by peers and children with disabilities, are also reported.
Conclusion: The findings of this review provide evidence that despite society's efforts to promote social inclusion, children with disabilities continue to report feeling lonely and excluded, having limited contact socially outside of home, and encountering systemic barriers (e.g., bullying, discrimination). More research on the social inclusion experiences of children with disabilities beyond educational settings is needed, such as in the contexts of recreation and leisure, community, and employment.
Implications for rehabilitation
The perspectives of children with and without disabilities need to be integrated in activities and programs aimed at promoting social inclusion.
Teaching social inclusion strategies to children with and without disabilities is needed to help them deal with barriers.
In addition to educational settings, rehabilitation clinicians need to promote social inclusion strategies in other contexts such as recreation and leisure, community, and employment contexts.
Introduction
Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues ...to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems.
Methods
We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second‐level analysis involved applying themes and subthemes to cross‐functional process maps.
Findings
Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers.
Conclusion
The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN.
Patient or Public Contribution
The research team is composed of patients, researchers, clinicians and decision‐makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way.
This study provides insights on the ways that youth express and process the emotions arising from their involvement in climate action. The specific objectives were to: (1) understand the ways youth ...come to know, conceptualize and reflect on climate change, (2) explore how youth’s emotions in response to climate change impacts their everyday lives; and (3) determine the modalities in which youth are expressing and processing such emotions. We used a grounded theory approach and the photovoice interview method to elicit participant’s views on climate-change-related emotions and interviews were analysed using qualitative data analysis software according to a grounded theory approach. The study resulted in identifying key themes, as well as supports for youth experiencing difficult emotions associated with climate change.
Refugee youth face challenges in navigating different cultures in destination countries and require better support. However, we know little about the adaptation experiences of African refugee youth ...in Canada. Accordingly, this paper presents the adaptation experiences of African refugee youth and makes recommendations for ways to support youth. Twenty-eight youth took part in semi-structured interviews. Using a thematic analysis approach, qualitative data revealed four themes of: (1) '
where youth talked about being separated from their parent(s) and the effect on their adaptation; (2)
where youth shared differences between African and mainstream Canadian culture; (3)
where youth narrated their struggles in finding identity; and (4) '
where youth narrated how they navigate African and Canadian culture. Overall, the youth presented with challenges in adapting to cultures in Canada and highlighted how these struggles were influenced by their migration journey. To promote better settlement and adaptation, youth could benefit from supports and activities that promote cultural awareness with attention to their migration experiences. Service providers could benefit from newcomer-friendly and culturally sensitive training on salient ways of how experiences of multiple cultures affect integration outcomes.
Objective
To summarize the psychosocial experience of women with breast cancer from a lifespan perspective by examining the findings of qualitative studies.
Methods
A meta‐aggregate review of 24 ...qualitative studies was undertaken. To be included, studies must include women with a breast cancer diagnosis and focus on younger or older women (as defined by the study), or compare a psychosocial issue across the lifespan. Eight databases were searched systematically.
Results
Study participants ranged in age from 26 to 91 years. Sixteen studies focused on younger women, six focused on older women, and two included women across the lifespan. A total of 155 findings were extracted from the studies and were aggregated into 11 categories. These were synthesized into four synthesized findings: (a) dealing with cancer, (b) the importance of caring, (c) the aftermath of cancer, and (d) fertility and infertility.
Conclusions
Further research is required to explore these findings, and to examine the needs of older women in particular. Delineating the similarities and differences in the needs of women across the lifespan will inform the development of psychosocial interventions for all women with breast cancer.
ObjectivesRespite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of families’ respite ...experiences who reside in Canada. We sought to understand experiences of the use of respite services by families with CYSHCN with the aim to help improve respite services. This paper reports on the qualitative arts-based findings.DesignQualitative methods including open-ended interviews combined with the arts-based methods of ecomaps and the photovoice process were used. Analysis involved delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes.SettingManitoba, a western Canadian province.ParticipantsThirty-two families (including 38 parents and 13 siblings) of CYSHCN.ResultsWe identified six themes surrounding challenges experienced by families’ in their journeys accessing, acquiring and navigating the respite care system, and sustainment of respite care for their families, leading to familial burn-out and breakdown, financial stress, unemployment and unaddressed mental health struggles. Families provided multipronged recommendations to address these challenges.ConclusionsThrough the lens of Canadian families of children with a range of complex care needs, the qualitative arts-based portion of the study underscores the challenges with accessing, navigating and sustaining respite care, which has implications for CYSHCN, their clinicians and the potential for long-term costs for government and society. This study identifies the state of the current Manitoba respite care system as an issue, presenting actionable recommendations from families that can assist policymakers and clinicians in advocating for and implementing a collaborative, responsive, family-centred system of respite care.
Child loss is the most traumatic loss a parent can experience, increasing their risk of negative outcomes such as complicated grief. Unexpected loss in the unfamiliar environment of the Emergency ...Department (ED) significantly increases this risk. Despite this knowledge, research on child loss in the context of the ED is scarce. An interpretive description qualitative research study was performed with eight parents (five mothers and three fathers) to examine their experience of unexpectedly losing a child in the pediatric ED. Data collection included interviews, demographic questionnaires, and field notes. Data were analyzed using a constant comparative method and revealed four main themes: “grief as waves,” “being the good parent,” “coping through the waves of grief,” and “the new normal.” Improving understanding around child loss and implementing stronger support for parents, through communication, advocacy, and physical presence while in the ED, could greatly reduce parents’ risk of negative outcomes.
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