Supporting Cancer Survivors Following Treatment for Non-Hodgkin's and Hodgkin's Lymphoma: A Pilot Study Assessing the Feasibility and Process Outcomes of a Nurse-Led Intervention.

OBJECTIVE: Lymphoma is the sixth most common cancer in Australia and comprises 2.8% of worldwide cancer diagnoses. Research targeting development and evaluation of post-treatment care for debilitating complications resulting from the disease and its treatment is limited. This study aimed to assess the feasibility and acceptability of a nurse-led survivorship intervention, post-treatment in Hodgkin's and non-Hodgkin's lymphoma survivors. METHODS: A single-center, prospective, 3-arm, pilot, randomized controlled, parallel-group trial was used. People with lymphoma were recruited and randomized to the intervention (ENGAGE), education booklet only, or usual care arm. Participants receiving ENGAGE received an educational booklet and were offered 3 consultations (via various modes) with a cancer nurse to develop a survivorship care plan and healthcare goals. Participant distress and intervention acceptability was measured at baseline and 12-wk. Acceptability was measured via a satisfaction survey using a 11-point scale. Feasibility was measured using participation, retention rates, and process outcomes. Data were analyzed using descriptive statistics. RESULTS: Thirty-four participants with HL and NHL were recruited to the study (11 = intervention, 11 = information only, 12 = usual care). Twenty-seven participants (79%) completed all time points from baseline to 12 wk. Seven (88%) of the 8 participants receiving ENGAGE completed all consultations using various modes to communicate with the nurse (videoconference 14/23, 61%; phone 5/23, 22%; face-to-face 4/23, 17%). Participants who completed the intervention were highly satisfied with ENGAGE. CONCLUSION: The ENGAGE intervention is feasible and highly acceptable for lymphoma survivors. These findings will inform a larger trial assessing effectiveness and cost effectiveness of ENGAGE.

Hodgkin Lymphoma Survivor Wellness: Development of a Web-Based Intervention.

BACKGROUND: Informational and supportive care resources are needed for Hodgkin lymphoma (HL) survivors. OBJECTIVES: The aim of this article is to adapt and evaluate a previously developed survivorship care website for HL survivors. METHODS: A mixed-methods, user-centered design, including one-time focus groups, was followed by iterative web design and user testing. Transcripts were content analyzed, and survey responses were summarized. FINDINGS: HL survivors need survivorship care education and support. Tailored web-based resources may be an effective adjunct to clinical care. The Survivor Wellness website is a usable web-based resource for HL survivors that may facilitate survivorship care.

A narrative analysis of the stories of mothers who have parented a child with Hodgkin lymphoma who is currently in early survivorship.

AIMS AND OBJECTIVES: To explore the lived experience of mothers of children who have survived Hodgkin lymphoma, from diagnosis, through treatment and recovery as she has lived it and in her own words and to discuss the self-reported experiences in the context of the theoretical propositions of Attachment Theory and birth order as it applies to the mother-child dyad with this life experience. BACKGROUND: While much has been written about childhood cancer survivors and their parents independently, there are unique struggles that a mother and a childhood cancer survivor face as a dyad. Examining the dyadic relationship over time offers a unique perspective to understanding the parenting experience with a child whose fate is uncertain. DESIGN AND METHOD: Narrative Inquiry was utilised to explore the bonds the mother has with her child before he or she is diagnosed with cancer, the relationship during treatment and the subsequent relationship when the child has entered survivorship. Most specifically, the research explored the attachment of the mother to her child as it relates to the Caregiving System. A purposive sample of 13 mothers of children diagnosed with Hodgkin lymphoma representing children from each birth order category (youngest child, middle child, oldest child and only child) was chosen. The interviews were analysed through thematic analysis with final themes identified. RESULTS: Several core themes emerged from the narratives regardless of birth order. The most significant was the "need to protect." Additional themes were "things will never be the same," "unique bond," "shifting priorities" and "lost innocence." CONCLUSIONS AND RELEVANCE TO PRACTICE: The research shows activation of the Caregiving Behavioral Response System as it relates as a reciprocal to Attachment Theory.

Abordaje de un paciente oncológico y su familia / Approach for an oncology patient and her family

Caso clínico de una paciente de 49 años de edad, con oligofrenia y diagnosticada de linfoma de Hodgkin en estado avanzado. El avance de la enfermedad, junto con la situación familiar actual, ha provocado la aparición de un afrontamiento familiar comprometido. Dado que la enfermedad está en progresión se decide incluir a la paciente en el proceso de cuidados paliativos, con un nivel de complejidad media. La paciente, portadora de un catéter venoso central con reservorio subcutáneo (Port-A-Cath®), precisa extracciones sanguíneas continuas, así como transfusiones de repetición. El seguimiento es llevado a cabo tanto por el equipo de cuidados paliativos domiciliarios como por el Servicio Hospitalario de Hematología y el equipo de Atención Primaria (enfermera gestora de casos, enfermera y médico de familia). Puesto que son múltiples los profesionales implicados en este proceso, se precisa de una buena coordinación con el resto de profesionales sanitarios, con el objetivo de que la paciente reciba todos los cuidados necesarios y de que lleve una vida lo más digna posible y libre de sufrimiento

A clinical case of a 49-year-old female patient, mentally handicapped and with a diagnosis of advanced Hodgkin’s Lymphoma. The progression of the disease, together with the current situation of her family, has led to the development of compromised family coping. Given that the disease is progressing, it is decided to include the patient in the palliative care process, with an intermediate level of complexity. The patient has a central venous catheter with subcutaneous reservoir (Port-A-Cath®), requires continuous blood extractions, and also repeat transfusions. Follow-up is conducted by the Home Palliative Care Team as well as by the Hospital Haematology Department and the Primary Care team (nurse case manager, nurse, and GP). The involvement of multiple healthcare professionals in this process requires good coordination between all of them, with the objective of providing all necessary care to the patient, so that she can lead a life as dignified as possible and free of suffering

Osteoartropatía hipertrófica y enfermedad de Hodgkin / Hypertrophic osteoarthropathy and Hodgkin's disease

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Health-related quality of life after treatment of Hodgkin lymphoma in young adults.

PURPOSE/OBJECTIVES: To describe changes in health-related quality of life (HRQOL) and to identify supportive care services used after treatment for Hodgkin lymphoma (HL) in young adults. DESIGN: A longitudinal, repeated-measures study design was used to test the feasibility of data collection at the conclusion of treatment for HL and at one, three, and six months post-treatment. SETTING: Participants were identified from two large comprehensive cancer centers in New England. SAMPLE: 40 young adults with newly diagnosed HL were enrolled in the study prior to the completion of chemotherapy or radiation. METHODS: Data were collected by interviews, standardized questionnaires, and medical record reviews. MAIN RESEARCH VARIABLES: HRQOL variables defined as symptom distress, functional status, emotional distress, and intimate relationships; use of specific supportive care services; and baseline demographic and disease-related information. FINDINGS: Results indicate that symptom distress improved at one month post-treatment and remained low at three and six months. Similarly, functional status improved at one month post-treatment. Only 13% of the sample had significant emotional distress at baseline, and this decreased to 8% over time. Patients placed high value on their intimate relationships (i.e., family and friends or sexual partners). A variety of supportive care services were used after treatment, the most common of which were related to economic issues. However, by six months post-treatment, services shifted toward enhancing nutrition and fitness. CONCLUSIONS: The results from this study suggest that HRQOL in young adults with HL improved one-month post-treatment and that interest in using supportive care services was high. IMPLICATIONS FOR NURSING: Facilitating the use of supportive care services at the end of cancer treatment appears to be an important part of helping young adults transition to survivorship. KNOWLEDGE TRANSLATION: Supportive care services appear to be a vital component of the transition to survivorship and often change over time from an emphasis on economic issues to enhancing wellness through nutrition and fitness programs.

'Being a Part of Treatment': the meaning of self-monitoring for rural cancer patients.

BACKGROUND: The diagnosis and treatment of cancer entail managing vast amounts of information in order for patients to participate effectively in disease self-management. Information management includes patients' responses to acquire, manage, and use external and internal information, such as through self-monitoring practices. OBJECTIVE: The study objective was to examine the meaning of self-monitoring practices within the context of rural patients' responses to internal and external information. METHODS: An empirical phenomenological approach was used. Participants were adults 18 years or older, who were once diagnosed with cancer, who agreed to discuss health monitoring behavior in relation to their cancer experience, and who used services at a small, rural cancer center. Data were collected using semistructured interviews. RESULTS: Findings revealed a self-directed pursuit of self-monitoring that was shaped by 4 factors, that is, cognitive, affective, interpersonal, and symptomatic. Quotations from participants illustrate these factors. "I'd ask the questions …" represents the cognitive factor. "Are the horse stories about cancer treatments true?" represents the affective factor. The interpersonal factor is represented as "My nurse was there for me!" The symptomatic factor is represented as "Chemotherapy blocks out your memory." Informed by these factors, participants' self-monitoring practices fostered participants' sense of control and self-advocacy efforts. CONCLUSION: Nurses are in a strategic position to engage in supportive care practices through the facilitation of self-monitoring. IMPLICATIONS FOR PRACTICE: Assessment questions grounded in study findings are suggested for use by nurses to develop patient-centered education that facilitates self-monitoring practices.

Music therapy: a valuable adjunct in the oncology setting.

Music therapy is the supervised and therapeutic use of music by a credentialed therapist to promote positive clinical outcomes. It can be a valuable form of complementary medicine in the oncology setting to decrease patient stress and anxiety, relieve pain and nausea, provide distraction, alleviate depression, and promote the expression of feelings. The music therapist assesses the patient and consults other members of the multidisciplinary team to create a therapeutic treatment plan. Music therapists design music sessions based on patients' needs and their intended therapeutic goals. Patients can participate actively or passively in individual or group sessions. Only a credentialed music therapist can provide safe and beneficial music therapy interventions.

[Culturally competent care: helping an immigrant mother's child with cancer return to elementary school].

In bicultural families in Taiwan, women who have immigrated to Taiwan and married a Taiwanese husband are often obligated to be the primary caregiver for their sick children. Thus, in Taiwan's transcultural healthcare environment these mothers are an important communication bridge between healthcare professionals and families. As mothers consider the education and development of their children while the latter recover from illness, they bear primary responsibility for communicating and coordinating amongst the family, hospital and school. Active and comprehensive nursing plans are needed to assist immigrant mothers and their children to complete treatment plans. The author is a primary nurse who helped the mother to understand care methods and how to integrate medical professional, teacher, and family member resources to make her child's reentry school successful. This article described the process of school reentry, follow-ups, specific nursing intervention, and evaluation that contributed to the child achieving his developmental tasks. The author hopes this article can be a reference for clinical care and future research.

Cancer leads to calling.

A nursing student shares her adolescent experience of Hodgkin's lymphoma and calling from God into nursing.

Nurses provide valuable proxy assessment of the health-related quality of life of children with Hodgkin disease.

BACKGROUND: We prospectively compared the proxy reporting of health-related quality of life (HRQL) by parents and nurses of children with Hodgkin disease to see how well they correlated with the children's report. METHODS: Children with all stages of Hodgkin disease, their parents, and the clinic nurse were all asked to complete 4 different HRQL measures at 4 time points: 2 weeks after the first course of chemotherapy, on the third day of the second course of chemotherapy, during the third week of radiation, and 1 year after diagnosis. RESULTS: Fifty-one patients from 12 centers across Canada were enrolled in the study between May 1, 2002 and March 31, 2005. Two patients were excluded. The children's Pediatric Quality of Life Inventory (PedsQL) generic scores increased from 64 at base line to 81 at the end of the study. There was substantial agreement (intraclass correlation coefficient >0.6) among the participants' scores at most time points except when the child was actively receiving inpatient chemotherapy. At that time, there was only fair to moderate agreement between the child and parent, with the parents on average rating the PedsQL generic score 5 points lower than the child. The nurses still had substantial agreement at that time point with the PedsQL generic and cancer module as well as the EuroQol EQ-5D visual analogue scale visual analogue scale. CONCLUSIONS: Over the course of treatment for Hodgkin disease, there was substantial agreement among the parent's, nurse's, and children's reported HRQL scores. Nurses contribute valuable additional information as proxy respondents.

Clinical application of family management styles to families of children with cancer.

The potential clinical application of family management styles for working with families who have children with cancer is discussed. Case studies are used to illustrate the usefulness and clinical application of the model.

An advocate's perspective on cancer survivorship.

OBJECTIVE: To illustrate the scope of advocacy in cancer survivorship and to emphasize the critical role that health care providers play to help improve the quality of life of cancer survivors. DATA SOURCES: Published articles, government reports, and books. CONCLUSIONS: The delivery of quality cancer care requires not only an understanding of cancer survivorship issues but also a strategy for advocacy efforts for cancer survivors and their families. IMPLICATIONS FOR NURSING PRACTICE: Advocacy efforts involve individual interventions and family-focused support, public and professional education, and programs and policies that enhance cancer care and quality of life.

Virtual reality as a distraction intervention for older children receiving chemotherapy.

The purpose of this pilot study was to describe the perceived effectiveness and feasibility of using virtual reality (VR) as a distraction intervention for children, aged 10-17, receiving outpatient chemotherapy. Treatments for cancer are intensive and difficult to endure. Distraction interventions are effective because the individual concentrates on pleasant or interesting stimuli instead of focusing on unpleasant symptoms. VR is a computer-simulated technique allowing an individual to hear and feel stimuli that correspond with a visual image. Evaluation of the VR intervention demonstrated positive outcomes. Eighty-two percent of the children (n = 11) indicated the chemotherapy treatment with the VR was better than previous chemotherapy treatments. All subjects responded positively when asked if they would like to use the VR again. The intervention was easy to implement, did not require practice to be effective, and required minimal nursing time. Results from this pilot study suggest that VR as a distraction intervention has the potential to enhance positive clinical outcomes. This intervention warrants further investigation with both pediatric and adult populations.

Feelings of oncology patients about being nursed in protective isolation as a consequence of cancer chemotherapy treatment.

This qualitative research explores the feelings of oncology patients nursed in protective isolation following high-dose chemotherapy. Five patients described their feelings about the isolation experience during audio-taped interviews lasting between a half and one hour. Tapes were transcribed and analysed, with emergent themes considered in relation to the other interviews and to the literature. The research findings indicate that cancer patients have specific concerns with regard to their experience in the isolation environment, which fall into four distinct categories of: 'being shut in'; 'coping with the experience'; 'being alone'; and 'maintaining contact with the outside world'. In addition, patients have concerns with regard to the experience of having cancer, that impinge upon the isolation experience. These are: 'having cancer'; 'suffering chemotherapy'; 'knowing what to expect'; and 'developing relationships with the health professionals'. The core variable is 'something that I have to go through'. The nature of the relationship between the categories led to the development of an integrative model for exploring the feelings of cancer patients nursed in isolation. Most of the informants coped well with the isolation experience and described feeling supported by the nursing staff. Their overriding concern in fact, reflected a desire to receive information about their disease and reassurance regarding their treatment. Being in isolation appears to inhibit communication about these issues.