The Wicked Problem of Stigma for Youth Living With Anxiety.

Anxiety disorders typically emerge in childhood and, if left untreated, can lead to poor health and social outcomes into adulthood. Stigma contributes to the burden of mental illness in youth. Mental health stigma has been conceptualized as a wicked problem and efforts to address this complexity require a greater understanding of how stigma operates in the lives of youth. Fifty-eight youth in Manitoba, Canada aged 10 to 22 years and living with anxiety took part in the study. Data collection involved in-depth interviews and arts-based methodologies. Youth living with anxiety faced stigma at three levels: (a) interpersonal, (b) intrapersonal, and (c) structural. Stigma held by others, internalized by youth and embedded in social institutions led to compromised relationships with family and peers, low self-esteem and self-efficacy, reduced help-seeking, and discrimination in school, workplace and health care settings. Implications and potential strategies for addressing these levels of stigma are discussed.

Above chaos, quest, and restitution: narrative experiences of African immigrant youth's settlement in Canada.

BACKGROUND: African Immigrant and refugee youth represent an increasing group of newcomers in Canada. Upon their immigration, youth experience challenges that have the potential to lead to poor health, yet little is known about their settlement journey. Accordingly, this qualitative study examines the settlement journey of African immigrant and refugee youth with a focus on how their experiences were shaped by the social determinants of health. METHODS: We conducted a total of 70 interviews with 52 immigrant and refugee youth (ages 13-29 years) who had arrived in Canada in the preceding six years. Qualitative data was analyzed using Frank's dialogical narrative analysis approach (Frank AW, Practicing Dialogical Narrative Analysis. In: Varieties of Narrative Analysis, 2016). RESULTS: Youth experienced different settlement journeys that are described in the three narrative typologies of chaos, quest, and restitution. The chaos narrative of a long road ahead revealed the themes of 'facing challenges' and 'still the outsider.' The quest narrative of not there yet was represented by the themes of 'stepping out of your comfort zone' and 'being relentless.' The theme of 'supportive environments' depicted the restitution narrative of dreams become a reality. Youth highlighted the impact of social determinants of health in their settlement. CONCLUSION: Youth experienced different settlement journeys that were mired in chaos and challenges. However, youth were more likely to experience restitution when they received social support and found a sense of belonging. In future, policies and programs that seek to improve immigrant and refugee youth's settlement experiences need to be multifaceted, offer more support and promote a sense of belonging.

A qualitative study on African immigrant and refugee families' experiences of accessing primary health care services in Manitoba, Canada: it's not easy!

BACKGROUND: Immigrant and refugee families form a growing proportion of the Canadian population and experience barriers in accessing primary health care services. The aim of this study was to examine the experiences of access to primary health care by African immigrant and refugee families. METHODS: Eighty-three families originating from 15 African countries took part in multiple open ended interviews in western Canada. Qualitative data was collected in six different languages between 2013 and 2015. Data analysis involved delineating units of meaning from the data, clustering units of meaning to form thematic statements, and extracting themes. RESULTS: African immigrant and refugee families experienced challenges in their quest to access primary health care that were represented by three themes: Expectations not quite met, facing a new life, and let's buddy up to improve access. On the theme of expectations not quite met, families struggled to understand and become familiar with a new health system that presented with a number of barriers including lengthy wait times, a shortage of health care providers, high cost of medication and non-basic health care, and less than ideal care. On the theme of facing a new life, immigrant and refugee families talked of the difficulties of getting used to their new and unfamiliar environments and the barriers that impact their access to health care services. They talked of challenges related to transportation, weather, employment, language and cultural differences, and lack of social support in their quest to access health care services. Additionally, families expressed their lack of social support in accessing care. Privately sponsored families and families with children experienced even less social support. Importantly, in the theme of let's buddy up to improve access, families recommended utilizing networking approaches to engage and improve their access to primary health care services. CONCLUSIONS: African immigrant and refugee families experience barriers to accessing primary health care. To improve access, culturally relevant programs, collaborative networking approaches, and policies that focus on addressing social determinants of health are needed.

The centrality of disclosure decisions to the illness experience for youth with chronic conditions: A qualitative study.

The aim of this paper is to illuminate findings of disclosure experiences for youth living with chronic illness using a non-categorical approach. The findings were derived from a larger qualitative study framed by social constructivist grounded theory that sought to understand youth's involvement in healthcare decision-making in the context of chronic illness. Fifty-four youth participated in the study, ranging from 9 to 24 years. Three main themes representing the youth's perspectives and experiences of disclosing chronic illness were identified: (1) disclosure is central to the illness experience; (2) spectrum of disclosure; and (3) navigating others' reactions to disclosure. The findings reinforce that more emphasis on decisions related to disclosing illness in research and clinical care for youth with chronic conditions is warranted.

Understanding Youth's Lived Experience of Anxiety through Metaphors: A Qualitative, Arts-Based Study.

Living with anxiety can be a complex, biopsychosocial experience that is unique to each person and embedded in their contexts and lived worlds. Scales and questionnaires are necessary to quantify anxiety, yet these approaches are not always able to reflect the lived experience of psychological distress experienced by youth. Guided by hermeneutic phenomenology, our research aimed to amplify the voices of youth living with anxiety. Fifty-eight youth living with anxiety took part in in-depth, open-ended interviews and participatory arts-based methods (photovoice and ecomaps). Analysis was informed by van Manen's method of data analysis with attention to lived space, lived body, lived time, and lived relationships, as well as the meanings of living with anxiety. Youth relied on the following metaphors to describe their experiences: A shrinking world; The heavy, heavy backpack; Play, pause, rewind, forward; and A fine balance. Overall, youth described their anxiety as a monster, contributing to feelings of fear, loss, and pain, but also hope. The findings from this study can contribute to the reduction of barriers in knowledge translation by encouraging the use of narrative and visual metaphors as a communicative tool to convey youth's lived experience of anxiety to researchers, clinicians, and the public.

The lived experience of anxiety and the many facets of pain: A qualitative, arts-based approach.

Background: Findings reported in this article emerged from the study titled "Youth's Voices: Their Lives and Experiences of Living with an Anxiety Disorder." Though the initial focus of this study was not on the pain experiences of youth living with an anxiety disorder, it became apparent from the very first interviews that pain and suffering was key in the youth lived experience, permeating their everyday lives and impeding their participation and functioning in the world. Aims: The aim of this article is to highlight the ways in which pain is a central experience for young people living with an anxiety disorder. Methods: The study was approached from the qualitative research design of hermeneutic phenomenology. Fifty-eight young people who were living with anxiety disorders and their parents participated in the study. Youth took part in multiple qualitative open-ended interviews and the participatory arts-based method of photovoice. Themes were developed using van Manen's method of data analysis. Results: The overall theme emerged as "anxiety is very much about pain." The four subthemes are (1) embodied experience of anxiety: physical pain; (2) a prominent symptom of anxiety: mental-emotional pain; (3) difficult interpersonal relationships: social pain; and (4) articulating their pain. Conclusions: Use of qualitative, arts-based methodologies provided the opportunity and space for youth with anxiety to articulate their multifaceted experience with pain in their own words. This work reinforces the need for use of qualitative approaches to understanding pain experiences in young people.

Contexte: Les conclusions présentées dans ce document sont issues de l'étude intitulée « La voix des jeunes : Leurs vies et leurs expériences de la vie avec un trouble anxieux ¼. Bien que l'objectif initial de cette étude n'était pas de s'intéresser aux expériences de douleur des jeunes vivant avec un trouble anxieux, il est apparu dès les premiers entretiens que la douleur et la souffrance étaient des éléments clés de l'expérience vécue par les jeunes, qui imprégnaient leur vie quotidienne et entravaient leur participation et leur fonctionnement dans le monde.Objectifs: Le présent document vise à mettre en lumière les façons dont la douleur constitue une expérience de premier plan pour les jeunes vivant avec un trouble anxieux.Méthodes: L'étude a été abordée à partir de la conception de la recherche qualitative de la phénoménologie herméneutique. Cinquante-huit jeunes vivant avec des troubles d'anxiété et leurs parents ont participé à l'étude. Les jeunes ont pris part à de multiples entretiens qualitatifs ouverts et à la méthode participative Photovoice, fondée sur les arts. Les thèmes ont été déterminés en utilisant le processus d'analyse des données inspiré de van Manen.Résultats: Le thème général qui s'est dégagé est le suivant : « L'anxiété est essentiellement liée à la douleur ¼. Les quatre sous-thèmes sont les suivants : (1) L'expérience de l'angoisse incarnée : La douleur physique ; (2) Un symptôme important de l'anxiété : la douleur mentale et émotionnelle ; (3) Les relations interpersonnelles difficiles : la douleur sociale ; et (4) l'articulation de leur douleur.Conclusions: L'utilisation de méthodologies qualitatives fondées sur les arts a permis aux jeunes anxieux d'exprimer leur expérience multidimensionnelle de la douleur dans leurs propres mots.Ce travail renforce la nécessité d'utiliser des approches qualitatives pour comprendre les expériences de la douleur chez les jeunes.

Healthy Canadian adolescents' perspectives of cancer using metaphors: a qualitative study.

OBJECTIVES: Cancer has been described using metaphors for over 4 decades. However, little is known about healthy adolescents' perspectives of cancer using metaphors. This paper reports on findings specific to adolescents' perspectives of cancer using metaphors. The findings emerged from a qualitative ethnographic study that sought to understand Canadian adolescents' conceptualisation of cancer and cancer prevention. DESIGN: To arrive at a detailed description, data were obtained using individual interviews, focus groups and photovoice. SETTING: 6 high schools from a western Canada province. PARTICIPANTS: 75 Canadian adolescents. RESULTS: Use of 4 metaphors emerged from the data: loss (cancer as the sick patient and cancer as death itself); military (cancer as a battle); living thing (haywire cells and other living things) and faith (cancer as God's will) metaphors, with the loss and military metaphors being the ones most frequently used by adolescents. Adolescents' descriptions of cancer were partly informed by their experiences with family members with cancer but also what occurs in their social worlds including mass media. Adolescents related cancer to emotions such as sadness and fear. Accordingly, more holistic and factual cancer descriptions, education and psychosocial support are needed to direct cancer messaging and clinical practice. CONCLUSIONS: Findings from this study suggest that the public and healthcare providers be more aware of how they communicate cancer messages.

Living in a world without closure: reality for parents who have experienced the death of a child.

The death of a child has been described as being for parents one of the most traumatic of losses. Nevertheless, information about how parents experience transition through the death trajectory is lacking. This phenomenological study explored parents' lived experienced of transitioning through the death of a child. Twenty-eight bereaved parents (17 mothers, 11 fathers) took part in retrospective, open-ended interviews. Findings showed that, regardless of the time, parents continued to live in a world without closure and, more importantly, did not want to experience closure in their transitioning. To parents, "closure" meant an end to their child in every sense of the word. Their experience of living in a world without closure was supported by four themes: "keeping the memories alive", "being a good parent", "being there at my child's death", and "being there for me after my child dies". Findings yield new insights into how parents live with the death of a child.

A different way of being: adolescents' experiences with cancer.

Adolescents with cancer face many challenges that may impact negatively their psychological well-being. In evaluating the psychosocial functioning of adolescents with cancer, research suggests that an altered self-image may emerge in those who have difficulty adjusting. However, little is known about adolescents' perceptions of how cancer affects their sense of self. Part of a larger study, this article addresses findings specific to understanding the impact that cancer and its symptoms had on adolescents' sense of self. To help discover meaningful interpretations of their experiences, a longitudinal, qualitative study was conducted. Data collection methods included open-ended, individual and focus group interviews and participant observation. The constant comparative method of data analysis yielded theoretical categories that were supported by the adolescents' narratives. Findings revealed that adolescents experienced changes in their lived bodies because of the symptoms and this, in turn, impacted their sense of self and way of being in the world. Six ways of being in the world were identified: life as a klutz; life as a prisoner; life as an invalid; life as an alien; life as a zombie; and life as a kid. In helping adolescents deal with the changes, it was important to family and friends to respond to them like they were the same person, but also to treat them special at times. Although adolescents spoke to the significance that cancer had on their lives, they described themselves as "still being pretty much the same person."

A different perspective to approaching cancer symptoms in children.

A sound and comprehensive knowledge base about symptoms in children experiencing cancer is necessary if health care professionals hope to effectively manage their symptoms. To date, there is still much to be discovered about how children with cancer and their families experience childhood cancer symptoms. Accordingly, a longitudinal qualitative study was undertaken between July 1998 and December 2000 to explore and describe the childhood cancer symptom course from the perspectives of children and their families. The study was conducted in three settings: the participants' homes and both an inpatient and outpatient pediatric cancer unit located in Western Canada. Thirty-nine children (4 1/2- to 18-year-old males and females) with mixed cancer diagnoses and their families (parents and siblings) participated in the study. The majority of the children were diagnosed with either leukemia or lymphoma (72%), had siblings (87%), and two parents (87.2%), and remained in remission at the completion of the study (90%). All the children received chemotherapy either alone (56%) or in combination with surgery (18%), radiation (5%), radiation and bone marrow transplant (8%), radiation and surgery (10%), and surgery, radiation, and bone marrow transplant (3%). Multiple methods of data collection were used including open-ended formal interviewing and participant observation. Interview and participant observation data were analyzed by the constant comparative method of data analysis. The creation of illness narratives added to the understanding of children's and families' experiences. In addition to providing a description of how the symptoms affected children's and families' daily living, findings related to how to health professionals can better understand and approach children's cancer symptoms emerged. When families, physicians, nurses, and other health professionals approached children's symptoms solely as side effects (e.g., nausea) or singular physical and psychological states, children provided minimal description of what they were actually experiencing. However, a greater understanding was achieved when the symptoms were approached as dynamic multidimensional experiences that occurred within a particular context. Children experienced symptoms as feeling states. Critical to children's feeling states were the meanings that children and their families assigned to the symptoms. Viewing cancer symptoms in the context of assigned meanings has implications for how symptoms are assessed and managed. The need to develop a children's symptom assessment tool based on assigned meanings is recommended.

"Nothing is carved in stone!": uncertainty in children with cancer and their families.

Although more children are surviving childhood cancer, they and their families still face many new stressors and challenges. Understanding the experiences of childhood cancer in children and families is conditional upon building a sound and comprehensive knowledge base that is grounded in research. Accordingly, a longitudinal interpretive qualitative study was conducted to arrive at an understanding of children's and families' perspectives on having to experience the childhood cancer-symptom trajectory. A purposive sample of 39 children with cancer and their families were recruited into the study. Open-ended interviews and participant observation were the primary data collection methods. Data were analyzed by the constant comparative method of grounded theory and analysis of illness narratives. Findings revealed that in addition to the stress and suffering resulting from the children's multiple symptom experiences, children and their families experienced many other events or 'rough spots' that made cancer and life difficult to get through. Although the 'rough spots' were numerous and varied, they all resulted in children and their families experiencing feelings of uncertainty. This paper focuses on describing the nature of uncertainty experienced by the children with cancer and their families. Recommendations for nursing practice and research are discussed.

The 2002 Schering Lecture. Children's cancer symptom experiences: keeping the spirit alive in children and their families.

Despite the finding that each child and family experienced cancer in their own unique way, they all shared the need to maintain a sense of spirit. Just as the suffering united the families, so too did their sense of spirit. Talk of the spirit is not foreign in the pediatric oncology literature. Statements such as "the children's responses suggest a resolute spirit that accepts cancer and goes on with life" (Hockenberry-Eaton & Minick, 1994, p.1030) are dispersed throughout the literature and reinforce the importance of the spirit in children and families experiencing childhood cancer. Yet despite this, the spirit in children with cancer has received minimal attention from researchers (Woodgate, 2001). The focus has been solely directed at studying the sense of self in children. In fact, some would even argue that the spirit can be equated with one's sense of self. There is also the feeling that the spirit is something that does not exist. How could it be "real" when it has never been seen or even measured in research? However, just because something cannot be seen or measured, does not mean that it does not exist. As was revealed by the families participating in my study, there was a spirit within them that got them through the cancer experience, especially during times of increased symptom distress. Research that seeks to describe the "spirit within" of children and families who are going through many of life's challenges is warranted. This includes understanding the conceptualization of the spirit from the perspectives of children experiencing illness. Although understanding spirituality and spiritual distress is beginning to be studied in children experiencing illness (Pehler, 1997), children's perspectives are usually not accessed. By developing a deeper understanding of the "spirit within," oncology nurses and other professionals caring for children with cancer may be able to provide more sensitive and comprehensive care. They will have a better understanding to nursing the spirit. So to conclude, let us as oncology nurses continue to help families maintain their sense of spirit. And yes, let us maintain a sense of spirit within ourselves. We could learn from the families we care for with respect to how to nurture our spirits and the spirits of those close to us. Taking care, holding on to the belief, taking one day at a time, and so on, are all strategies that we could learn to incorporate more frequently into our daily lives. May a part of the spirits of those we care for be with us and live on in us forever, because their lingering spirits are sources of hope and strength, as this mother reinforced.

How families of children with complex care needs participate in everyday life.

While we have some understanding of the impact caring for children with complex care needs has on families, little is known about how these families experience participation. This longitudinal qualitative study aimed to extend our limited understanding of how the changing geographies of care influence the ways that Canadian families with children with complex care needs participate in everyday life. The findings in this article focus on parents' conceptualizations of participation including their perspectives of participation involving themselves, their children, and their family unit. Sixty-eight parents from 40 families took part in the study. Conradson's (2005) conceptualization of therapeutic landscapes that focuses on the relational dimensions of the self-landscape encounter guided the study. Data collection methods included ethnographic methods of interviewing and photovoice. As a summary of their views, parents within this study described participation as a dynamic and reciprocal social process of involvement in being with others. For participation in everyday life to be meaningful, the attributes of choice, safety, acceptance, accessibility, and accommodation had to be present. Participation was valued by parents because it resulted in positive outcomes. Overall, meaningful participation contributed to them and their children having a life. Having a life referred to being involved in a place where families feel that they belong, are accepted, and are able to contribute to the landscape they participate in. The decision to choose to participate became contingent upon the availability of resources and the parents' ability to harness them. Harnessing resources referred to the work parents must do to get the necessary resources to make it possible for them and their children to have a life. Having a life for parents required significant physical, mental, psychological and spiritual work by parents. At times the personal resources of parents were so taxed that the possibility for meaningful participation was something less than what they desired. The families' stories raise questions of societal obligations to promote meaningful participation. This study lends support for further improvements that may enrich the lives of families with children with complex care needs.

A journey within a journey: the lived experience of parents who do not live near their child's tertiary cancer center.

Much research has been directed at childhood cancer survivors and their families to learn how to best provide care. However, little is known about parents' experiences of transitioning to a time when their child has completed treatment for cancer when living at a distance to the tertiary cancer center. The purpose of this study was to talk to such parents about their experiences. Five Canadian parents of children who had completed treatment for cancer in the past 3 months to 5 years took part in qualitative opened-ended interviews using a phenomenological hermeneutic approach. Data analysis revealed the essence of the parents' lived experience as a journey within a journey; 4 themes characterized the essence. Parents living a 2.5- to 5-hour drive from the cancer center expressed a willingness to travel wherever necessary in order to receive specialized care for their child. Parents emphasized the importance of having a local health care provider in whom they trusted. Assessing families' needs, support systems, and readiness to return home are important nursing roles throughout the cancer trajectory.

Parents' experiences in decision making with childhood cancer clinical trials.

Childhood cancer requires families to deal with many stressors, including decision making in terms of their child's treatment. Adding to the stress of families is that most children participate in clinical research trials. Minimal research has been done to explore parents' decisions related to involving their child in childhood cancer clinical trials. Especially missing is a description of Canadian parents' perspectives. This article describes a qualitative study that sought to understand Canadian parents' participation in decisions about childhood cancer clinical trials. Person-centered, individual, open-ended interviews were conducted with 31 parents of children with cancer. The parents ranged in age between 27 and 51 years. Data analyzed by the constant comparative method revealed that parents found their participation in decisions about childhood cancer clinical trials as a difficult and extraordinary experience that included 6 themes: (1) living a surreal event, (2) wanting the best for my child, (3) helping future families of children with cancer, (4) coming to terms with my decision, (5) making one decision among many, and (6) experiencing a sense of trust. This study indicates that parents need more support not only during the initial decision-making period but also throughout the entire time their child is enrolled in a clinical trial.

Feeling states: a new approach to understanding how children and adolescents with cancer experience symptoms.

Children with cancer experience short- and long-term symptoms. The symptoms can escalate child and family suffering and impact on their quality of life. Children's perspectives of their cancer symptoms have been increasingly investigated; however, there is still much more to be learned from children with cancer. Accordingly, a qualitative study that sought to arrive at an interpretive description of children's and adolescent's perspectives about their cancer symptoms was conducted, with a focus on exploring what children and adolescents with cancer think and feel about their cancer symptoms. Open-ended individual interviews were conducted with 13 children and adolescents with cancer. The patients ranged in age between 9 and 17 years. Data were analyzed by the constant comparative method of data analysis. Five themes emerged from the data: (1) It is all together, (2) Shared and unique ways of feeling, (3) I am feeling this way because..., (4) Feelings about my feelings, and (5) It is hard to explain. The findings reinforce that children have a lot to tell us about how cancer makes them feel but may have difficulty communicating how they feel to nurses and other healthcare providers.

Supporting siblings through the pediatric bone marrow transplant trajectory: perspectives of siblings of bone marrow transplant recipients.

When a child undergoes bone marrow transplant (BMT), the entire family is affected by the demands of the transitions encountered throughout the BMT experience. Although there is a growing body of knowledge on how healthy siblings adjust to the BMT experience, there is still much to be learned. Part of a larger study aimed at detailing healthy siblings' lived experiences of BMT, this article presents findings specific to one of the study's objectives that focused on understanding siblings' perspectives of how nurses and other health professionals can best support siblings throughout the BMT trajectory. A qualitative research study guided by the philosophy of hermeneutic phenomenology was conducted. Eight siblings of pediatric BMT recipients were recruited. Semistructured, open-ended interviews, demographic data, and field notes were the primary sources of data. Interview transcripts were analyzed and interpreted using van Manen's approach. Seven themes emerged: (1) include me in the definition of "family," (2) be caring, (3) share information with me, (4) give me choices, (5) help me share my feelings, (6) provide opportunities for me to meet my peers, and (7) create a healthy hospital environment. Findings showed that siblings have definite thoughts about how nurses and other health professionals should support them, but their support needs are not being met.

Siblings' experiences with childhood cancer: a different way of being in the family.

Childhood cancer and its treatment result in many challenges that impact the entire family. For siblings of children with cancer, the challenges can be particularly stressful as they often undergo tremendous change in their lives. Although there is a sound and growing body of knowledge on how siblings experience childhood cancer, there is still much to be learned. Part of a larger qualitative study aimed at detailing childhood cancer experience and its symptom trajectory from the perspective of parents, ill children, and siblings, this study aims to describe findings specific to 30 siblings who participated in the study. Siblings took part in individual interviews, focus group interviews, and participant observation. The constant comparative method of data analysis yielded the theoretical category of "ways of being in the world," which referred to the different ways that cancer impacted on the lives of children with cancer and their families. For the siblings, cancer was experienced as a different way of being within their family and involved siblings undergoing a loss of a family way of life and a loss of self within the family. Three themes related to a different way of being in the family were identified: committing to keeping my family together, being present, and enduring sadness. The findings reinforce that more needs to be done in helping healthy siblings through childhood cancer.

Living in the shadow of fear: adolescents' lived experience of depression.

AIM: This paper reports a phenomenological study whose aim was to gain an understanding of what it was like to be an adolescent living with depression. BACKGROUND: Depression is a significant mental health problem among adolescents. Identifying the meanings that adolescents assign to their experiences with depression is needed in order to develop interventions that will improve their care and quality of life. METHOD: The study took place in a city in Western Canada. Fourteen adolescents (13.5 to 18 years) diagnosed with depression participated in individual open-ended interviews and focus group interviews between July 2001 and June 2002. Field notes were recorded. Thematic statements that were representative of the adolescents' lived experience were isolated from the interviews and field notes. Using all the phrases, sentence clusters and field notes, the data were then reduced until essential and incidental themes emerged. FINDINGS: "Living in the shadow of fear" emerged as the essence of the adolescents' experiences and ultimately defined what it was like to live with depression. The shadow of fear was associated not only with fear of a return of the "bad" feelings related to their depression, but also to fear of not getting help, not surviving the "bad" feelings, and fear of having to do all the "hard work" in overcoming the "bad" feelings. This essence was supported by four themes: "containing the shadow of fear", "keeping the self alive", "maintaining a sense of belonging in the world" and "feeling valued as a human being". CONCLUSIONS: Adolescents with depression need adequate resources and support throughout the illness trajectory, including those periods when their depression is under control.