Preliminary data on the lived experience of having multiple primary cancer diagnoses.

Approximately one in two Canadians will develop some form of cancer, and some will live long enough to be diagnosed with multiple primary cancers. There is some indication that multiple primary cancer diagnoses negatively impact survivors' mental and physical status, and quality of life. Existing research studies do not fully capture the complexity of what it is like to have multiple primary cancer diagnoses. Accordingly, a qualitative study was conducted to elicit detailed descriptions of the lived experiences of having multiple primary cancer diagnoses. Participants included 10 individuals from Atlantic Canada with a history of two or more cancer diagnoses. Data were captured through semi-structured interviews and participant-generated photographs. Interviews were transcribed and reviewed for common meanings. Preliminary data analyses suggest that the essential meaning of having cancer multiple times is that cancer is "unwanted encore". This study yields findings that can provide empirically-based guidance to healthcare providers to help support cancer survivors in a more holistic way throughout the extended continuum of care and ultimately improve the health of individuals who have had multiple primary cancers.

Supporting adolescents and young adults with cancer through transitions: position statement from the Canadian Task Force on Adolescents and Young Adults with cancer.

OBJECTIVE: This position statement from the Canadian Task Force on Adolescents and Young Adults with cancer aims to (1) conceptualize the numerous transition experiences encountered by adolescents and young adults (AYA) with cancer; and (2) provide recommendations on how to help the AYA regain a sense of control over their lives as they adjust to these transition experiences. METHODS: We reviewed and synthesized a heterogeneous sample of studies and recommendations, ranging from well-designed case-controlled investigations to opinions of respected authorities based on clinical experience, and reports of expert committees. RESULTS: We describe the key factors that have an impact on different transitions during the cancer journey, and the need for developmentally appropriate services for AYA with cancer that consider both the system issues and individual transition issues. Our recommendations are not intended to be prescriptive, but they are broad enough to be applicable in different types of settings (eg, family doctor, cancer center, specialty service) and systems beyond health care (eg, school system, social system). CONCLUSIONS: The Task Force urges health care providers, parents, and AYA with cancer to work together in planning and implementing strategies that will enable individuals to navigate the transitions they encounter along the cancer journey successfully, and strive for meaningful participation in life situations, achieving their potential as fully functional members of society.

Taking care of second cancer risk.

BACKGROUND: Cancer survivors are living longer and are at greater risk of developing cancer than the general population. Promotion of healthy lifestyle behaviors and provision of regular follow-up care may modify the evolution of a second cancer diagnosis. Little is known, however, about cancer survivors' decision making and actions related to modifying second cancer risk. OBJECTIVE: Part of a larger mixed-method study of second cancer risk, qualitative interview data were collected to arrive at an interpretive description of how cancer survivors modify their second cancer risk, and how nurses and other healthcare professionals can best support survivors throughout the cancer survival trajectory. INTERVENTIONS/METHODS: Semistructured interviews were conducted with 22 cancer survivors (16 women and 6 men) drawn from a provincial cancer registry. The cancer survivors ranged in age from 19 to 87 years. The cancer history of the participants varied. Data were analyzed using the constant comparative method. RESULTS: Two themes that emerged from the interviews that speak to how cancer survivors modified their second cancer risk were (1) how I take care of my second cancer risk and (2) support I need to take care of my second cancer risk. CONCLUSIONS: For many cancer survivors, awareness of the benefits of taking care of second cancer risk does not translate into action. IMPLICATIONS FOR PRACTICE: Study findings reinforce that more needs to be done in supporting cancer survivors in taking care of second cancer risk.

Life after cancer: living with risk.

BACKGROUND: Recent research shows that cancer survivors are at greater risk of developing cancer than the general population. Although recommended, many cancer survivors receive no regular cancer screening. Cancer survivors' perceptions of their second cancer risk are, in part, suspected to influence their participation in cancer screening. OBJECTIVE: This study was conducted to explore how cancer survivors define and interpret second cancer risk. METHODS: An interpretive descriptive approach was taken whereby semistructured interviews were conducted with 22 cancer survivors (16 women and 6 men) drawn from a provincial cancer registry. The sample ranged in age from 19 to 87 years. The cancer history of the participants varied. Data were analyzed using the constant comparative method of data analysis. RESULTS: The overall theme, "life after cancer-living with risk," described cancer survivors' sense that risk is now a part of their everyday lives. Two themes emerged from the data that speak to how cancer survivors lived with second cancer risk: (1) thinking about second risk and (2) living with risk: a family affair. CONCLUSIONS: Effective risk communication to support the decisions made by cancer survivors with respect to cancer screening is warranted. IMPLICATIONS FOR PRACTICE: Study results provide foundational knowledge about the nature of second cancer risk that may be used to develop and refine standards for survivorship care including how second cancer risk can be best managed.

Preventing second cancers in cancer survivors.

PURPOSE/OBJECTIVES: To provide a systematic review of the secondary prevention practices of cancer survivors guided by the Interaction Model of Client Health Behavior. DATA SOURCES: Articles published in peer-reviewed journals from 1996-2007. DATA SYNTHESIS: Despite their increased risk for second cancers, few cancer survivors maintain regular follow-up with a clinician knowledgeable of late effects. Cancer screening rates for cancer survivors are below optimal levels recommended for the general population. Multiple antecedents explain survivors' health practices. Few tested interventions are available to promote secondary prevention practices among cancer survivors. CONCLUSIONS: Cancer survivors are less likely to adopt secondary prevention practices than individuals without a cancer history. IMPLICATIONS FOR NURSING: Nurses can encourage cancer survivors to adopt secondary prevention practices by providing positive reinforcement, support, and education. As more comprehensive, evidence-based guidelines for longitudinal care become available, nurses will be able to provide care to survivors with greater confidence and certainty.

An interruption in family life: siblings' lived experience as they transition through the pediatric bone marrow transplant trajectory.

PURPOSE/OBJECTIVES: To arrive at an understanding of the lived experience of healthy donor and nondonor siblings as they transition through the bone marrow transplantation (BMT) trajectory. RESEARCH APPROACH: Qualitative study guided by the philosophy of hermeneutic phenomenology. SETTING: Participants' homes or the investigator's university or hospital office. PARTICIPANTS: Eight siblings of pediatric BMT recipients were recruited based on their knowledge of the experience of transitioning through the BMT trajectory. METHODOLOGIC APPROACH: Data were collected by semistructured, open-ended interviews; demographic forms; and field notes during a period of six months. Data analysis occurred concurrently with data collection. Thematic statements were isolated using Van Manen's selective highlighting approach. Interviews were reviewed repeatedly for significant statements. MAIN RESEARCH VARIABLE: Siblings' lived experience of the BMT trajectory. FINDINGS: Interruption in family life emerged as the essence of siblings' lived experience. Four themes supported this essence: life goes on, feeling more or less a part of a family, faith in God that things will be okay, and feelings around families. CONCLUSIONS: Hermeneutic phenomenologic research increases understanding of what being a sibling of a pediatric BMT recipient means. This study is one of the few that have afforded siblings the opportunity to speak about what is important to them. INTERPRETATION: Findings from this study provide insight into how siblings live and cope throughout the BMT trajectory and will guide nurses as they seek to provide more sensitive and comprehensive care.

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.

Phantom limb sensations and phantom limb pain in child and adolescent amputees.

OBJECTIVE: To provide a better understanding of the prevalence, correlates and quality of phantom sensations and phantom pain in child and adolescent amputees. DESIGN: Retrospective survey study. SETTING: Recruitment through the War Amputations of Canada. PARTICIPANTS: Sixty child and adolescent amputees aged 8-18 years who were missing a limb due to a congenital limb deficiency (n = 27) or surgery/trauma (n = 33). MAIN OUTCOME MEASURE(S): Questionnaire to assess the occurrence and correlates of phantom sensations and phantom pain. RESULTS: Forty-two percent of the total sample reported phantom sensations; 7.4% of the congenital group and 69.7% of the surgical group (chi2 = 23.70 with 1 df, P < 0.01.) Twenty-nine percent of the total sample reported phantom pain; 3.7% of the congenital group and 48.5% of the surgical group (chi2 = 14.67, with 1 df, P < 0.01). Eighty-eight percent of the amputees with phantom pain had stump pain, while 35.3% had phantom pain that was similar to pre-operative pain and 76.5% experienced pains other than phantom pain (e.g. headaches). Amputees identified exercise, objects approaching the stump, cold weather and 'feeling nervous' as the primary triggers of phantom sensations and/or phantom pain. CONCLUSION(S): Less than half of the sample experienced phantom sensations and phantom pain; however, the loss of a limb due to surgery is associated with an increase in the likelihood of experiencing these phenomena.