Enduring Cell Lines: Parents' Experiences of Postmortem Tumor Banking in Childhood Cancer.

While cure rates in pediatric oncology have improved over the past 30 years, childhood cancer remains the second leading cause of death in children aged 1 to 14. Developing therapies often require using cancerous tissues, which may come from deceased donors. Tumor banks collect, store, and distribute these donated samples. While tumor banking is more common, factors that contribute to parents' decision and the impact of it on the family are not well understood. The purpose of this hermeneutic study was to understand the meaning and impact of tumor banking for parents of children who have died from cancer. Findings suggest that parents donating their child's tumors unexpectedly found a sense of meaning in their loss. They also found a legacy of their child's life; the living cells in some ways assisted the parents with grief. Aspects of this sensitive conversation and decision are discussed from the perspective of the parents' experiences.

Composing Sexuality in the Midst of Adolescent Cancer.

A cancer diagnosis heralds the onset of significant life changes. The various experiences of diagnosis, treatment, and recovery from cancer during adolescence and young adulthood are complex and disruptive. Emphasis on treatment and recovery often overshadows other social and developmental imperatives for adolescents and young adults. Acknowledging, exploring, and crafting one's own sexual identity is a significant milestone achieved during this time, and it is one that is interrupted by the arrival and treatment of cancer. There is value in understanding how adolescents and young adults compose sexuality amid cancer experiences, and how this composition contributes to their ongoing stream of life experiences after recovery. As part of a larger study of sexuality and adolescent cancer, we undertook a narrative inquiry with Anna and Mark, two young adults who experienced cancer during adolescence. Over 14 months, we met with Anna and Mark, drawing on different narrative inquiry approaches to explore their past and ongoing experiences and to build negotiated stories of those experiences. We explored resonant threads between the stories, which help show the depth and complexity of sexuality as it is experienced in the midst of and after cancer. Two resonant threads are discussed: inward and outward looking, and sexuality and survival. The inquiry reveals the richness of self-composition amid competing stories of cancer treatment, disruptions to family and socialization, survivorship, what it means to be a young man or woman in the world, and the sense of a developing sexual self.

Digital Storytelling as a Psychosocial Tool for Adult Cancer Survivors.

PURPOSE: To understand the meaning and impact for adult patients with cancer (past or present) of creating a digital story related to their cancer experience. PARTICIPANTS & SETTING: 10 participants made digital stories with the help of a research assistant trained in digital storytelling. This research took place in a large, urban center in Calgary, Alberta, Canada. METHODOLOGIC APPROACH: This research was done in the tradition of philosophical hermeneutics. Ten one-on-one interviews were conducted, and data were analyzed using an interpretive qualitative methodology. FINDINGS: Findings revealed that digital stories were cathartic; reconnected individuals with family, friends, and parts of their lives that had been interrupted from cancer therapy; helped participants reflect in a way that was often described as therapeutic; and bridged communication with others about their cancer experiences. IMPLICATIONS FOR NURSING: Digital stories can be used to highlight the immense psychosocial impact of cancer and point healthcare professionals and other researchers toward creative and nontraditional ways to address this issue.

"Family Is Who They Say They Are"a: Examining the Effects of Cancer on the Romantic Partners of Adolescents and Young Adults.

In this article, we discuss a study we conducted to examine the effects of cancer on romantic partners (i.e., boyfriends and girlfriends, social/romantic/intimate partners) of adolescents and young adults experiencing, or who have experienced, cancer. In this hermeneutic study, we interviewed partners who were involved with an adolescent/young adult with cancer, a cancer survivor who was in a relationship during his treatment, and two healthcare professionals who have worked with these couples and witnessed many other situations of impact, effect, and repercussion. Out of this study, we suggest that partners are affected in many ways that can vary from estrangement, to termination of the relationship, to premature decisions about remaining in the relationship, to family disregard of the partner, and to disregard of the family due to influence of, or relationship with, the partner. We discuss these findings within the context of the larger picture of the psychosocial relational impact of cancer on members beyond those in the immediate and biological family.

Social Return on Investment: A New Approach to Understanding and Advocating for Value in Healthcare.

OBJECTIVE: To determine whether the methodology of social return on investment (SROI) could be a way in which the value of a healthcare-related program (children's cancer camp) could be captured, evaluated, and communicated. BACKGROUND: The value of healthcare goes beyond what can be captured in financial terms; however, this is the most common type of value that is measured. The SROI methodology accounts for a broader concept of value by measuring social, environmental, and economic outcomes and uses monetary values to represent them. METHODS: The steps/stages of an SROI analysis were applied to the context of a children's camp for this article. RESULTS: Applying the SROI methodology to this healthcare-related program was feasible and provided insight and understanding related to the impacts of this program. CONCLUSIONS: Because of SROI's flexibility, it is a tool that has great potential in a healthcare environment and for leaders to evaluate programmatic return on investment.

"A Tribe Apart": Sexuality and Cancer in Adolescence.

This qualitative study employed hermeneutic phenomenology and narrative inquiry to examine the topic of sexuality and adolescents with cancer from the perspectives of survivors who had experienced cancer as adolescents. This investigation examined the potentially sensitive, disquieting, and often taboo issue of sexuality in the interest of optimizing wellness in young people, and, ultimately, in the health of adults. Understanding the adolescent body as a sensitive, sexual, and developing self can enrich our understanding of adolescent cancer and promote best health care and practices, examining ways that we might mitigate the long-term effects of arrested or delayed development of sexual identity. In this article, we discuss phase 1 of the study, which used hermeneutics as the method of inquiry. Findings included a general experience of adolescents having a sense of "losing themselves" while at the same time finding themselves in a new light. Other findings include the connection between sexuality, self, and identity; the unique "tribe" of adolescents with cancer; the necessity for sexuality to take a backseat to cancer; the changing mirror images from self and others; sexuality and fertility; and, ultimately, that sexuality is a relational experience.

Stories That Heal: Understanding the Effects of Creating Digital Stories With Pediatric and Adolescent/Young Adult Oncology Patients.

The purpose of this philosophical hermeneutic study was to determine if, and understand how, digital stories might be effective therapeutic tools to use with children and adolescents/young adults (AYA) with cancer, thus helping mitigate suffering. Sixteen participants made digital stories with the help of a research assistant trained in digital storytelling and were interviewed following the completion of their stories. Findings from this research revealed that digital stories were a way to have others understand their experiences of cancer, allowed for further healing from their sometimes traumatic experiences, had unexpected therapeutic effects, and were a way to reconcile past experiences with current life. Digital stories, we conclude, show great promise with the pediatric and AYA oncology community and we believe are a way in which the psychosocial effects of cancer treatment may be addressed. Recommendations for incorporating digital stories into clinical practice and follow-up programs are offered.

"Stories Take Your Role Away From You": Understanding the Impact on Health Care Professionals of Viewing Digital Stories of Pediatric and Adolescent/Young Adult Oncology Patients.

The purpose of this philosophical hermeneutic study was to understand the effects on health care providers (HCPs) of watching digital stories made by (past and present) pediatric and adolescent/young adult (AYA) oncology patients. Twelve HCPs participated in a focus group where they watched digital stories made by pediatric/AYA oncology patients and participated in a discussion related to the impact the stories had on them personally and professionally. Findings from this research revealed that HCPs found digital stories to be powerful, therapeutic, and educational tools. Health care providers described uses for digital stories ranging from education of newly diagnosed families to training of new staff. Digital stories, we conclude, can be an efficient and effective way through which to understand the patient experience, implications from which can range from more efficient patient care delivery to decision making. Recommendations for incorporating digital storytelling into healthcare delivery are offered.

Examining the Effects of Childhood Cancer on the Parental Subsystem: Implications for Parents and Health Care Professionals-Part 3.

This article is the third part of a hermeneutic research study examining the impact of childhood cancer experiences on the parental relationship. In Part 1, we offered an exploration of the phenomenon with background literature; a description of the research question, method, and design; and finally a discussion of relationships that survived, thrived, or demised, with an emphasis on the notions of difference and trading. In Part 2, we furthered the interpretations to look at the complexities of issues such as teams, roles, focus, protection, intimacy, grieving, putting relationships on hold, and reclaiming them. In this article, we discuss the advice that the participants offered us and how that advice might have implications for other parents in similar situations and health care professionals working with families experiencing childhood cancer.

Taking One for the Team: Examining the Effects of Childhood Cancer on the Parental Subsystem-Part 2.

In this Part 2 of a three-part research paper, we further our interpretations from our hermeneutic study examining how having a child who has experienced cancer had an impact on the relationship between the parents. In Part 1, we identified the focus of the study and provided background to the topic. We also described the research question, method, and design before offering an interpretive analysis of couples whose relationships survived, thrived, or demised. In this article, we extend the interpretations under an overarching theme of "taking one for the team." Here, we discuss issues of changes in focus and roles, and the notions of tag teaming, protection, intimacy, and grieving. We examine the phenomenon of putting relationships on hold, then finding reclamation later. In Part 3, we offer implications of these findings for other parents in similar situations and for health care professionals working with these families.

Differences and Trading: Examining the Effects of Childhood Cancer on the Parental Subsystem-Part 1.

This article is the first of a three-part report of a research study that used hermeneutic inquiry to examine the effects of childhood cancer on the relationship between the parents of the child. In Part 1, we identity the topic of investigation and the relevant literature; describe the research question, method, and design; and begin our interpretations of the data with a focus on the couples who remained together and those who experienced relationship demise. In this analysis, we discovered that issues of difference and trading played a strong role in how the couples fared in their relationships. In Part 2 of this series, we focus on further interpretations, and in Part 3, we discuss the implications of the study for other parents and for health care professionals.

"It's not Just Camp!": Understanding the Meaning of Children's Cancer Camps for Children and Families.

The purpose of this philosophical hermeneutic inquiry was to understand the meaning of children's cancer camps for the child with cancer and the family. Six childhood cancer families and 5 cancer camp counselors were interviewed, in order to bring understanding to this topic. Findings from this research revealed that camp means different things for different families, and that much is at play in the cancer camp experience: the healing and developmental power of play, finding acceptance and fit, grief as something to live with versus "get over," storytelling as a means of reshaping and understanding traumatic experiences, and the solidarity of the community as one that creates intense, healing bonds. Children's cancer camps, we conclude, should be considered a necessity, versus a luxury, and could even be thought of as a psychosocial intervention for some children and families. Barriers such as structure of funding and access to resources are present and likely due to the separateness of camps from hospital programs.

Children's cancer camps: a way to understand grief differently.

A philosophical hermeneutic study was conducted as part of the first author's doctoral research to understand the meaning of children's cancer camps for the child with cancer and the family. Twenty family members from six families were interviewed in order to bring understanding to this topic. This article will detail the finding related to the experience of grief that often accompanies a cancer diagnosis, and how camp seems to allow children and families to understand their grief differently. The interesting thing about this particular cancer camp is that families of children who have died continue to attend the camp yearly, and there are events to memorialize the many children known to all the campers who no longer attend camp. This is not a grief camp but a cancer camp where grief is allowed presence as it necessarily has to in the world of childhood cancer.

Waiting to return to normal: an exploration of family systems intervention in childhood cancer.

The illness suffering of families in childhood cancer is characterized in part by a loss of family normalcy. Hermeneutic phenomenology and family process research methods were used to analyze videotaped family intervention sessions and post-intervention family/clinician interviews. Within this article, some of the findings from the larger doctoral study that focused on the illness suffering of family members and relational, family systems intervention based on the Illness Beliefs Model are described. Although the larger study included findings of family interventions that addressed several aspects of the illness suffering experienced, this article details specific findings related to the theme of the loss of family normalcy and a longing to return home. Family systems intervention practices which facilitated a lessening of illness suffering included the following: offering new interpretations of suffering within a reflecting team, articulating family strength, sensitively acknowledging the illness suffering, and eliciting the experiences of family members in a shared therapeutic conversation.

Children's cancer camps: a sense of community, a sense of family.

Childhood cancer is a family affair, and each year in Canada, approximately 1,400 children and adolescents under the age of 20 are diagnosed with cancer. Innumerable challenges accompany this diagnosis, and in recognition of the stress of childhood cancer, children's cancer camps arose in the 1970s to help children and their families escape the rigidity and severity of cancer treatment. Very little is known about these cancer camps, and to that end, a philosophical hermeneutic study was conducted to understand the meaning of children's cancer camps for the child with cancer and the family. Six families were interviewed to bring understanding to this topic. While the research included findings related to the concept of play, fit and acceptance, storytelling, and grief, this paper will detail the finding related to the solidarity of the community--the "camp family"--as one that creates intense, healing bonds.

Grandparents' experiences of childhood cancer, part 2: the need for support.

In this study, the authors examined the experiences of grandparents who have had, or have, a grandchild with childhood cancer. Sixteen grandparents were interviewed using unstructured interviews, and the data were analyzed according to a hermeneutic-phenomenological tradition, as guided by the philosophical hermeneutics of Hans-Georg Gadamer. In Part 1 of this report, interpretive findings around worry, burden, silence, the nature of having one's universe shaken, of having lives put on hold, and a sense of helplessness were addressed. In Part 2, the authors discuss interpretations related to the notions of support, burden, protection, energy, standing by, buffering, financial shouldering, and relationship. The study concludes with implications that the grandparents in the study bring to pediatric nurses in their practices with families in pediatric oncology.

Grandparents' experiences of childhood cancer, part 1: doubled and silenced.

In this study, the authors examined the experiences of grandparents who have had, or have, a grandchild with childhood cancer. Sixteen grandparents were interviewed using unstructured interviews, and the data were analyzed according to hermeneutic-phenomenological tradition, as guided by the philosophical hermeneutics of Hans-Georg Gadamer. Interpretive findings indicate that grandparents suffer and worry in many complex ways that include a doubled worry for their own children as well as their grandchildren. According to the grandparents in this study, this worry was, at times, silenced in efforts to protect the parents of the grandchild from the burden of concern for the grandparent. Other interpretations include the nature of having one's universe shaken, of having lives put on hold, and a sense of helplessness. The grandparents in this study offer advice to other grandparents as well as to the health care system regarding what kinds of things might have been more helpful to them as one level of the family system, who, like other subsystems of the family, are also profoundly affected by the event of childhood cancer.

Families of young pediatric cancer survivors: A cross-sectional survey examining physical activity behavior and health-related quality of life.

The present study examined physical activity levels within young families of pediatric cancer survivors and the relationship between physical activity and health-related quality of life (HRQL). Nineteen families were recruited, including 33 parents, 17 pediatric cancer survivors, and 10 siblings. Families completed a self-report survey on background information, physical activity levels, and PedsQL generic core scale for child HRQL. Results of this cross-sectional study indicate that families were generally active, with mothers more frequently participating in overall physical activity (P < .001). Within families, parent-child physical activity levels were associated, but not survivor-sibling physical activity. Survivors and siblings did not differ in their self-reported physical activity levels or HRQL, and no association was observed between physical activity and HRQL. However, discrepancies between sibling self-report and parent proxy-reported HRQL were notable. Overall, results from this exploratory pilot work will assist in further research into physical activity behaviors and HRQL in families of pediatric cancer survivors.The nurse should consider the varied experiences of family members, particularly those of siblings, through long-term follow-up.

Knowing the family: interpretations of family nursing in oncology and palliative care.

PURPOSE: Families are acknowledged as a focus of care in oncology nursing in many countries but the meaning of "family nursing" in this practice setting has received little attention from researchers and theorists. In this article, we report the findings of a study that explored family nursing practices in three adult cancer care settings: ambulatory care (medical and radiation oncology clinics), a palliative care service, and an in-patient unit. METHOD: Data included in-depth interviews with 30 nurses and 19 families, as well as participant observations in each practice setting. The interviews were transcribed verbatim and the analyses guided by philosophical hermeneutics. RESULTS: We identified several narratives related to family nursing practices, and in this article we offer the interpretations of two of these narratives: 1) knowing the family and being known; and 2) addressing family concerns and distress. In knowing the family and being known nurses opened relational space for families to become involved in the care of their loved ones and gained an understanding of the family by "reading" non-verbal and para-verbal cues. Knowing the family created opportunities for nurses to address family concerns and distress in meaningful ways. These included guiding families by being a bridge, helping families to conserve relationships, and negotiating competing family agendas. Nurses relied on questioning practices to create relational space with, and among, family members. CONCLUSIONS: Implications for the development of family nursing practice, theory, and education are discussed.