The Unspeakable Nature of Death & Dying During Childhood: A Silenced Phenomenon in Pediatric Care.

In pediatric settings, the concept of hope is frequently positioned as a fundamental aspect of care and at odds with the possibility and proximity of death. This arguably fosters silence about death and dying in childhood despite evidence indicating the benefits of open communication at the end of life. In this paper, we describe the unspeakable nature of death and dying in childhood, including its conceptual and clinical causes and dimensions, its persistence, and the associated challenges for children and youth facing critical illnesses, their families, and society. We explore how the tension between hope and death can be reframed and apply our analysis to the context of medical assistance in dying for mature minors in Canada. Considering the lack of related literature, this paper offers initial reflections to form a framework for the unspeakable nature of death and dying in childhood and to advance the crucial need for research.

Exploring illness identity among children and youth living with cancer: A narrative review.

BACKGROUND: Children and youth with cancer may find it challenging to integrate illness into their pre-existing identity-a phenomenon known as illness identity. In this critical narrative review, we explored illness identity among children and youth with cancer. METHODS: Three academic databases were searched. Twenty-two articles were included in this review and each underwent thematic analysis. RESULTS: Cancer has both positive and negative influences on the identities of children and youth. Illness identity is expressed creatively through various communicative outlets. Further, external processes such as social support may influence cancer identity. A few studies cited cancer as a hindrance to adult identity development. CONCLUSIONS: Cancer has a profound impact on identity formation among children and youth. Many normative assumptions about time, identity, and child and youth development underlie the existing literature. Future researchers may adopt a critical lens to be inclusive of diverse identity experiences among children and youth with cancer.

They know it's safe - they know what to expect from that face: perceptions towards a cognitive-behavioural counselling programme among caregivers of children with cystic fibrosis.

AIMS AND OBJECTIVES: To explore the experiences of eight caregivers who provide care to children with cystic fibrosis in an eight-week cognitive-behavioural counselling programme at a children's hospital in Winnipeg, Canada. BACKGROUND: Youth with cystic fibrosis experience significant behavioural and psychosocial challenges, such as depression, anxiety and poor treatment adherence. Caregivers are critical to the provision of care and treatment to young people living with cystic fibrosis. Caregivers of youth with cystic fibrosis experience psychosocial morbidity. Thus, the development of counselling interventions is required to enhance psychosocial well-being among the caregivers of youth with cystic fibrosis. DESIGN AND METHODS: This study was informed by the thematic analytic qualitative research tradition. In-depth, semistructured interviews were conducted with eight caregivers who participated in our programme. The audiotaped interviews were then subject to thematic analysis. RESULTS: The counselling sessions were experienced as 'distinctly different' from routine appointments at the hospital and were characterised by a sense of listening and bidirectional communication. In addition to acquiring a sense of trust and accountability through the programme, counselling appeared to enhance caregivers' perception of their time use, leading to greater temporal agency. CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: From this evidence-based cognitive-behavioural counselling programme, insights about the complex psychosocial lives of the cystic fibrosis community are discussed within the context of the literature. Integrating cognitive-behavioural counselling into routine clinical CF care should be considered as a method to enhance caregiving capacity in the CF community and should be championed by nurses.

Illness conversations: Self-disclosure among children and youth with chronic illnesses.

OBJECTIVE: Illness disclosure refers to when individuals with chronic illnesses make decisions to tell others about their disease. There is a lack of research on the complexity of disclosure among children and youth with chronic illnesses. We conducted a review of the literature to understand the process of disclosure among children and youth with chronic illnesses in the context of peer-based relationships. METHODS: A narrative review was completed using three databases. The search yielded 11 articles that utilized various research designs. RESULTS: Most of the literature was qualitative in nature. Most children and youth engaged in non-disclosure and concealment which is born out of fears of discrimination. Fewer children and youth engaged in unplanned disclosure, passive disclosure, partial disclosure, and open disclosure. Children and youth carefully consider who they are disclosing to and perceptions about other peoples' responses strongly impact disclosure. Children and youth disclose verbally, behaviorally, and in written form. Disclosure is associated with both positive and negative effects, such as confidence, self-advocacy, and distress. DISCUSSION: Health providers and researchers should critically support disclosure and empower children and youth with the resources they need to be agents in their own disclosure decisions.

"This is the best fatal illness that you can have": contrasting and comparing the experiences of parenting youth with cystic fibrosis and congenital heart disease.

Despite the important instrumental and emotional role that parents play in the lives of children with cystic fibrosis (CF) and congenital heart disease (CHD), qualitative researchers have not examined the similarities and differences between caregivers' experiences. Informed by thematic analysis, in this qualitative study I explored what it is like to care for a child with a chronic illness from the perspective of CF and CHD parents at a children's hospital in Canada. Pediatric caregiver stress was qualitatively different between CF and CHD parents, whereas temporal dilemmas were unique sources of stress for CF parents only. To alleviate stress, all parents drew on a three-way, interrelated process to comprehend their child's illness and acquire perspective. By opening up the social worlds of parents, I illuminate important similarities and differences in the caregiving experience of parents of youth with CF and CHD, and offer novel contributions to the literature.

"No time to play": perceptions toward physical activity in youth with cystic fibrosis.

Although physical activity may reduce lung function decline in youth with cystic fibrosis (CF), most patients are inactive. Little is known about why youth with CF are inactive or how to facilitate physical activity. This study explored perceptions toward physical activity in 14 youth with CF at a Canadian Hospital. Qualitative interviews were conducted and a grounded theory analysis was undertaken. The participants demonstrated positive or negative perceptions toward physical activity and different experiences--such as parental support and illness narratives--influenced youths' perceptions. In addition, the participants experienced physical activity within the context of reduced time. Recommendations for developing physical activity interventions, including the particular need to ensure that such interventions are not perceived as wasteful of time, are provided.

Using photo-elicitation to explore health promotion concepts with children and adolescents with disabilities: a rapid scoping review.

PURPOSE: It is important to directly engage children and adolescents with disabilities (CAWD) in health promotion research to ensure their health needs are met. Arts-based research methods may help CAWD better express their ideas; photo-elicitation is one such technique, using self-captured photographs to enhance verbal descriptions of complex concepts. This review 1) summarizes findings from health promotion studies using photo-elicitation with CAWD; 2) explores benefits and challenges of using photo-elicitation; 3) identifies recommended photo-elicitation practices. MATERIALS AND METHODS: A scoping review was conducted using rapid review principles. Four health and social science databases were searched (2009-2019) using terms related to children, adolescents, disability, and photo-elicitation. Articles meeting inclusion criteria were summarized and analyzed thematically. RESULTS: Eight studies met inclusion criteria and explored a range of health promotion topics. Benefits of photo-elicitation included the ability to mediate communication and direct participants' focus. Challenges included difficulty operating a camera and understanding instructions about photograph subject matter. Four recommended practices were identified: 1) brainstorming photograph ideas; 2) photograph-taking training; 3) having CAWD select photographs for discussion; 4) limiting the number of photographs CAWD could capture. CONCLUSIONS: Integrating practices to support CAWD in using photo-elicitation can help researchers more fully understand their health experiences.Implications for RehabilitationThere is a need to directly engage children and adolescents with disabilities to express themselves in health promotion research.The arts-based method of photo-elicitation may help children and adolescents with disabilities convey how they view and experience health.Children and adolescents with disabilities may need supports, including camera training, to participate in photo-elicitation.

Living the journey to school: Conceptual asymmetry between parents and planners on the journey to school.

Research about school travel and the built environment developed using positivist and post-positivist onto-epistemologies often relies heavily on travel surveys, activity diaries, GPS tracking, and the "objective" measurement of built environment features using geographical information systems and planimetric data. That work takes up and applies specialized disciplinary and practice-based language (e.g., planning and engineering) and concepts that are used to describe, measure, and design the built environment. In this paper, we explore differences in how parents think about the built environment and school transport and the ways in which the built environment and transport are conceptualized in planning. The presence of conceptual asymmetry between a scholar's "model" and the "lived experience" of parents and children may have implications for the efficacy of school travel-related policy and planning. We use Bronfenbrenner's social ecological model to guide a thematic analysis of 37 interviews with parents about school travel behaviour in Toronto, Canada. We found that parents' experiences of the built environment are complex and varied, with different features influencing individual parents differently, and at varying levels of the ecological model. For example, mixed-use development, often held up as a necessary condition for tackling automobility, was cited as a desirable aesthetic background for driving. We were able to locate examples of conceptual asymmetry but also agreement - particularly about traffic around schools. For example, parents expressed divergent views on the impact of heavy traffic on walking, with some describing traffic and traffic safety as barriers to walking, while others indicated that resistance to driving in traffic motivated a choice to walk. Our study serves as a call to planners and geographers to better attend to the lay, everyday onto-epistemologies that shape parents' lived experiences of travel to school.

The weight of (the) matter: A new material feminist account of thin and fat oppressions.

Critical feminist approaches to eating disorders and "obesity" have recently come under criticism for relying too heavily on textual- and image-based analyses of health, identity and body weight, shape, and size. In this article, we examine qualitative interviews with self-identified anorexic and "obese" women using a new material feminist lens-particularly the work of Karen Barad-to see what this perspective contributes to conceptualizations of weight-based oppressions. In addition to outlining how the material world actively participates in ongoing processes of oppression, we also highlight how the body presses back, offering up potentially less oppressive processes of materialization. The article concludes on a cautiously optimistic note, pointing to how a new materialist framework may draw attention to micropolitical processes of becoming otherwise.

"A place to call our own": The impact of camp experiences on the psychosocial wellbeing of children and youth affected by cancer - A narrative review.

BACKGROUND: Although childhood cancer mortality rates are decreasing, intensive treatment modalities and missed school days may leave childhood cancer patients psychologically and socially vulnerable. Children with cancer often have increased anxiety, lower levels of self-esteem, and higher rates of depression, all of which may impair their psychosocial wellbeing. Specialized camps for children with cancer are becoming increasingly popular, as they provide a stress-free, outdoor environment in which children are able to interact with individuals similar to themselves, while experiencing the joys of a "normal childhood." OBJECTIVE: The aim of this review was to explore how camp participation impacts the psychosocial wellbeing of childhood cancer patients and survivors. METHODS: Six databases (MEDLINE, PsychINFO, EMBASE, CINHAL, Sociological Abstracts, Social Sciences Citation Index) were systematically searched for English literature published between 2007 and 2018. The search generated 1707 titles, and after being evaluated for relevance, 18 articles met the inclusion criteria. A thematic analysis was conducted. RESULTS: A variety of camp programs and methodologies were employed among the studies. Camp participation led to improved social health, followed by enhanced constructions of the self, quality of life, sense of normalcy, and attitude. CONCLUSION: This review demonstrates the potential ability of camp to buffer psychosocial losses for children affected by cancer. Addressing limitations, such as the lack of child-centered methodologies employed in camp settings, may not only help to guide future research on therapeutic recreation experiences for children with cancer, but also expand the evidence base for children living with other chronic illnesses and disabilities.

Physical Activity Counseling for Children With Cystic Fibrosis.

BACKGROUND: Physical activity is recommended as a component of the cystic fibrosis (CF) treatment regimen. However, to date, there is limited research examining the effects of behavioral counseling interventions aimed at increasing physical activity. The aim of this study was to assess the feasibility of a theoretically informed, parent-mediated counseling intervention in increasing habitual physical activity and quality of life among children and youth with CF. METHODS: Participants were recruited from the pediatric respirology clinic at the Children's Hospital of Winnipeg. Participants ranged in age between 8 and 18 y. A randomized control feasibility trial was implemented, and participants were randomized to the intervention (n = 7) or control group (n = 6). Intervention group participants engaged in 4 counseling sessions to examine the acceptability and feasibility of physical activity counseling in the care of children with CF. The primary outcome was study feasibility, as measured by recruitment, retention, adherence, acceptability, and the frequency of adverse events. Secondary outcomes included physical activity and quality of life, as measured by accelerometry and the Pediatric Quality of Life Inventory. RESULTS: Thirteen subjects completed the study. No adverse events were found in this trial. The intervention was found to be feasible and acceptable with good recruitment, retention, adherence, and acceptability. Positive trends were also reported in terms of increases in physical activity, reductions in time spent being sedentary, and improvements in most dimensions of quality of life pre- to post-intervention. CONCLUSIONS: The findings suggest that counseling is feasible for the CF community. An appropriately powered randomized controlled trial is required in the future to investigate the utility of counseling as a means to enhance quality of life and physical activity behavior.

'A tale of two cases:' the health, illness, and physical activity stories of two children living with cystic fibrosis.

Storytelling is perennial, and central to the human condition. Although illness may shatter identity and one's role and place in the broader social world, narrative may aid in the process of self-reparation. Despite the merits of the narrative approach, it has been underutilized with children who are living with cystic fibrosis (CF). The role that illness narratives may play in influencing CF youths' physical activity also remains poorly investigated. This article drew on the qualitative case study methodological tradition to narrate the stories of two children living with CF at a children's hospital in Canada. The findings beg researchers to consider (a) how children with life-limiting diseases borrow multiple illness narrative types, (b) the role of development in influencing the kinds of stories that children can tell, and (c) the impact of illness narratives on physical activity. By rendering the tales of two CF youth in this study, we respond to Aurthur Frank's call; taking a multiple narrative turn, we listen to stories of a different kind of suffering.