Roberta L. Woodgate

A review of qualitative research on the childhood cancer experience from the perspective of siblings: a need to give them a voice.

Researchers are increasingly adopting the qualitative research paradigm to study the world of siblings of children with cancer. The purpose of this review article is to identify the contributions of qualitative research in advancing the understanding of the childhood cancer experience from the perspective of siblings. Articles were selected for inclusion if (1) written in English; (2) published in a peer-reviewed journal between 1979 and present or, if a doctoral dissertation, easily accessible to the authors; (4) cited a specific qualitative research design or some type of qualitative research method of data collection and analysis; and (4) involved siblings of children with cancer as sole research participants or as research participants within the context of the family. Twenty-seven qualitative research studies were reviewed. Three themes emerged from an analysis of the primary findings: (1) changing lives, (2) intense feelings, and (3) unmet needs. Limitations in the conceptualization, research design, and research methods of the qualitative studies are discussed. Suggestions that will help researchers in conducting qualitative research with siblings are also presented.

Symptom distress in adult patients with cancer.

Symptom distress in the adult population with cancer is of concern to clinicians who care for these patients. Increased research has been directed toward the development and refinement of symptom distress scales, the identification of determinants of symptom distress, the investigation of symptom distress as a predictor, and the examination of the relationship between quality of life and symptom distress. Findings from this research have increased our understanding of symptom distress in adult patients with cancer. However, a major limitation of work to date has been a lack of consensus related to the definition and measurement of the symptom distress construct. The purpose of this article is to address existing conceptual and methodological challenges inherent in the study of symptom distress, and to make recommendations for further research in this area.

The intersection of culture, disability and assistive technology

Purpose. Although the use of assistive technology (AT) is by an individual, it occurs within a much larger socio-cultural environment. The purpose of this article is to describe and analyse current knowledge about the intersection of culture and disability in the context of the AT user. Methods. Literature review of theoretical and empirical study papers that discuss cultural aspects related to AT use or provision. Results. Understanding how an individuals culturally defined identity is shaped as an AT user, and the meaning the AT holds to that person and family, is essential to providing culturally appropriate AT services. AT providers also belong to a culture framed by their professional experiences; needed are ways of addressing ethnocentricity within culturally diverse practice settings. Some AT users may identify with a disability culture, a culture formed by a shared set of beliefs, values and behaviours around the construct of disability. Conclusion. This review reveals there is a paucity of knowledge about the intersection of AT and culture, and that this intersection requires further research. Embarking on this investigation is mandatory if we seek to meet the needs of the culturally diverse individuals who use AT.

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. Childrens 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 childrens and adolescents 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.

Youth’s Perspectives on the Determinants of Health

In this article, we discuss findings of an ethnographic exploring how Canadian youth frame health within the context of their life situations. Seventy-one youth (12 to 19 years of age) from diverse ethnic backgrounds and residing in a major city in western Canada took part in the study.We used traditional ethnographic methods of interviewing and fieldwork, as well as photovoice. Sociocultural themes emerging from the study indicate that even though youth have a broad understanding of health that includes acknowledging the many different types of health beyond physical health, lifestyle factors such as healthy eating and exercise nonetheless dominate the talk of health by youth. The results highlight that the concept of health normalized by academics and public policy experts—as being inclusive of the broader determinants of health—might not be congruent with how youth regard health.

Part II: A Critical Review of Qualitative Research Related to Children's Experiences With Cancer

Using the qualitative research process to study childrens experiences with cancer is being promoted because it is believed that it will afford researchers the opportunity to access childrens perspectives of their cancer experiences. A detailed understanding of childrens experiences with cancer will result, including a description of their feelings, wants, needs, and concerns. The information gained from qualitative research will help pediatric oncology nurses to better understand what their patients are experiencing. Although adoption of the qualitative paradigm in the study of childhood cancer is in its infancy, qualitative research findings related to childrens perspectives of cancer are now slowly emerging. Accordingly, the purpose of this article is to identify some of the meaningful contributions that qualitative research has made in advancing the knowledge base of childrens cancer experiences. The first section of this article discusses major themes that have evolved from use of the qualitative research process in the study of childrens cancer experiences. This discussion is followed by a critique of the research with suggestions that will aid pediatric nurse researchers in conducting qualitative research when children with cancer are the research participants.

Can I Play? A Concept Analysis of Participation in Children with Disabilities

ABSTRACT Participation is essential to childrens development. Children with disabilities are at risk for restricted participation. Despite wide use of the word participation, the definition remains vague. The eight steps of analysis by Walker and Avant () were used to guide the concept analysis. The uses and defining attributes of participation were identified and cases formulated within the context of children with disabilities and health care professions. In order to participate, a child with disabilities must take part in something or with someone, they must have a sense of inclusion, control over what they are taking part in, and be working toward obtaining a goal or enhanced quality of life. Through participation children acquire new skills, have increased physical, emotional and social well-being and enhanced quality of life. It is hoped that health care professionals can use this definition to address the shortcomings of existing programs and develop measures to assess the attributes of participation.

Cancer Survivorship in Children and Young Adults: A Concept Analysis

Survivorship has been described in a variety of ways. Understanding how survivorship is applied in the context of childhood cancer survivors is important to the practice of pediatric nursing because it will offer nurses new possibilities for providing guidance, support, and assistance in enhancing outcomes for childhood cancer survivors and their families. Accordingly, the purpose of this article is to provide a conceptual framework that will assist nurses in their efforts to attain the common goal of successful survivorship in childhood cancer survivors. The method of concept analysis developed by Walker and Avant is used. The result is a definition of survivorship that is relevant and useful for research and clinical practice in pediatric oncology.

Social support in children with cancer: a review of the literature.

Families experiencing childhood cancer are confronted with many stressors throughout the course of illness. For children with cancer, such stressors may be especially challenging. The extent to which they are able to deal with such challenges appears to be partly contingent on the support available from others. Positive social relations are considered to improve the quality of life of individuals in general and to help protect or buffer them from stressful life events such as cancer. This article presents a critical review and synthesis of research examining social support in children with cancer. Recommendations for research that will provide a foundation for understanding social support in children with cancer are outlined. These recommendations include the need to investigate (a) social support as a guiding, central construct, (b) social support from a family socio-cultural perspective, (c) social support from a developmental perspective, and (d) social support as a process. Implications for pediatric oncology nursing practice are discussed.

Designing a Mixed Methods Study in Pediatric Oncology Nursing Research

Despite the appeal of discovering the different strengths of various research methods, mixed methods research remains elusive in pediatric oncology nursing research. If pediatric oncology nurses are to succeed in mixing quantitative and qualitative methods, they need practical guidelines for managing the complex data and analyses of mixed methods research. This article discusses mixed methods terminology, designs, and key design features. Specific areas addressed include the myths about mixed methods research, types of mixed method research designs, steps involved in developing a mixed method research study, and the benefits and challenges of using mixed methods designs in pediatric oncology research. Examples of recent research studies that have combined quantitative and qualitative research methods are provided. The term mixed methods research is used throughout this article to reflect the use of both quantitative and qualitative methods within one study rather than the use of these methods in separate studies concerning the same research problem.