Losing a part of life: experiences of cancer survivors accessing treatment and sheltering in place during the COVID-19 pandemic.

PURPOSE: To explore experiences of sheltering in place and accessing treatment during the initial stages of the COVID-19 pandemic among survivors with cancer receiving tyrosine kinase inhibitor (TKI) therapy. METHODS: Participants from two pilot studies evaluating TKI therapy use in the Southeastern United States during the start of the COVID-19 pandemic (March 2020) were interviewed. Identical interview guides were used across both studies to assess participants' experiences accessing cancer treatment, sheltering in place, and coping during the COVID-19 pandemic. Digitally recorded sessions were transcribed professionally and checked for accuracy. Descriptive statistics were used to summarize participant sociodemographics, and a six-step thematic approach was used to analyze interview data and identify salient themes. Dedoose qualitative research software was used to manage and organize qualitative codes, themes, and memos. RESULTS: Participants (n = 15) ranged from 43 to 84 years of age, and were mostly female (53.3%), married (60%), and survivors with hematologic malignancies (86.7%). The research team identified five salient themes: Participants followed pandemic guidelines, Variable impact on well-being, Common feelings of fear, anxiety and anger, No barriers to accessing therapy and medical care, and Faith and God as powerful forces for coping. CONCLUSIONS: The conclusions of the study provide several implications for survivorship programs or clinics for supporting survivors who are taking chronic TKI therapy during COVID-19, including enhancement of current psychosocial support efforts for cancer survivors or development of new programs tailored to the unique needs of a survivor during a pandemic, such as focused coping strategies, modified physical activity programs, family/professional role changes, and access to safe public spaces.

Effects and moderators of coping skills training on symptoms of depression and anxiety in patients with cancer: Aggregate data and individual patient data meta-analyses.

PURPOSE: This study evaluated the effects of coping skills training (CST) on symptoms of depression and anxiety in cancer patients, and investigated moderators of the effects. METHODS: Overall effects and intervention-related moderators were studied in meta-analyses of pooled aggregate data from 38 randomized controlled trials (RCTs). Patient-related moderators were examined using linear mixed-effect models with interaction tests on pooled individual patient data (n = 1953) from 15 of the RCTs. RESULTS: CST had a statistically significant but small effect on depression (g = -0.31,95% confidence interval (CI) = -0.40;-0.22) and anxiety (g = -0.32,95%CI = -0.41;-0.24) symptoms. Effects on depression symptoms were significantly larger for interventions delivered face-to-face (p = .003), led by a psychologist (p = .02) and targeted to patients with psychological distress (p = .002). Significantly larger reductions in anxiety symptoms were found in younger patients (pinteraction < 0.025), with the largest reductions in patients <50 years (ß = -0.31,95%CI = -0.44;-0.18) and no significant effects in patients ≥70 years. Effects of CST on depression (ß = -0.16,95%CI = -0.25;-0.07) and anxiety (ß = -0.24,95%CI = -0.33;-0.14) symptoms were significant in patients who received chemotherapy but not in patients who did not (pinteraction < 0.05). CONCLUSIONS: CST significantly reduced symptoms of depression and anxiety in cancer patients, and particularly when delivered face-to-face, provided by a psychologist, targeted to patients with psychological distress, and given to patients who were younger and received chemotherapy.

Effects and moderators of psychosocial interventions on quality of life, and emotional and social function in patients with cancer: An individual patient data meta-analysis of 22 RCTs.

OBJECTIVE: This individual patient data (IPD) meta-analysis aimed to evaluate the effects of psychosocial interventions (PSI) on quality of life (QoL), emotional function (EF), and social function (SF) in patients with cancer, and to study moderator effects of demographic, clinical, personal, and intervention-related characteristics. METHODS: Relevant studies were identified via literature searches in 4 databases. We pooled IPD from 22 (n = 4217) of 61 eligible randomized controlled trials. Linear mixed-effect model analyses were used to study intervention effects on the post-intervention values of QoL, EF, and SF (z-scores), adjusting for baseline values, age, and cancer type. We studied moderator effects by testing interactions with the intervention for demographic, clinical, personal, and intervention-related characteristics, and conducted subsequent stratified analyses for significant moderator variables. RESULTS: PSI significantly improved QoL (ß = 0.14,95%CI = 0.06;0.21), EF (ß = 0.13,95%CI = 0.05;0.20), and SF (ß = 0.10,95%CI = 0.03;0.18). Significant differences in effects of different types of PSI were found, with largest effects of psychotherapy. The effects of coping skills training were moderated by age, treatment type, and targeted interventions. Effects of psychotherapy on EF may be moderated by cancer type, but these analyses were based on 2 randomized controlled trials with small sample sizes of some cancer types. CONCLUSIONS: PSI significantly improved QoL, EF, and SF, with small overall effects. However, the effects differed by several demographic, clinical, personal, and intervention-related characteristics. Our study highlights the beneficial effects of coping skills training in patients treated with chemotherapy, the importance of targeted interventions, and the need of developing interventions tailored to the specific needs of elderly patients.

Quality of life and lymphedema following breast cancer.

The aim of the study was to compare Quality of Life (QOL) of breast cancer patients with and without secondary lymphedema (SLE) using a cross-sectional design with a convenience sample. Research packets were mailed to 2088 breast cancer patients (BrCaPt). The QOL component of the study used the Quality of Life Instrument --Breast Cancer Patient Version for data collection. The sample (n = 537) was 12.9% African-American/Hispanic/Other (AA) and 87.1% European-American (EA). One hundred and twenty-two women (22.7%) reported SLE. Overall and subscale means were computed and ANOVA was determined for seven variables: age, marital status, educational level, race, type of surgery, time since diagnosis, and SLE. Women without SLE had a higher overall mean QOL score compared to women with SLE (p= 0.02). Women with a greater than high school education had a higher mean QOL score compared to women with high school or less education (p=0.05). SLE patients had poorer QOL in the physical (p<0.001), and social (p=0.004) subscales. Older women had a higher overall QOL compared to younger women (p<0.001). These results provide insight into the impact of SLE on women's QOL and pinpoint that physical and social well being are negatively influenced by SLE.

Healing Icons: art support program for patients with cancer.

OBJECTIVES: The purpose of this report is to describe the structure and process of an art support program for patients with cancer who are age 16 and older. MATERIALS AND METHODS: Healing Icons is a six-session art support program for cancer patients. During the program participants create a three-dimensional mixed-media art piece to convey a unique personal perspective on receiving a diagnosis of and being treated for cancer. Concurrently, the patients spontaneously share common experiences about their cancer, which leads to strong emotional bonds. The purpose and goals of the program, method of implementation, and evaluation are described. Information and suggestions that clinicians might find useful in developing similar programs are discussed. Patient participants, their families, and staff in the cancer center have reported positive clinical evaluations. CONCLUSIONS: The benefits of Healing Icons are derived from the therapeutic factors present in a traditional support group blended with the creative process. This kind of program opens new avenues for expressing feelings and thoughts but should be structured in such a way that group processes are not allowed to negatively impact participants. Healthcare professionals interested in collaborating with artists on similar programs for cancer patients may approach artists through local art councils, art schools, and artists guilds. Brainstorming sessions with artists would help to capitalize on the expertise of artists within the community. Initiating a pilot project would help gauge patient interest and would provide valuable feedback from the healthcare team. Research is needed to validate the clinical outcomes derived from this program, as empirical findings would greatly enhance the clinical evaluations.

Research triangulation to derive meaning-based quality-of-life theory: adolescent resilience model and instrument development.

We describe the triangulation of qualitative and quantitative research methods used to develop and test the Adolescent Resilience Model (ARM). The differences in meaning-based and function-based health-related quality of life (HRQL) are discussed, and method triangulation is presented as a means of developing models of HRQL that represent the perspectives of the adolescent and family. Qualitative methods of phenomenology, simultaneous concept analysis, focus groups and thematic analysis were used to generate the ARM. Quantitative instrumentation and structural equation model development and testing were used to evaluate the ARM. A decision-making process for combining qualitative and quantitative research, so that both approaches are equally valued and used, is also presented. Int. J. Cancer Suppl. 12:125-131, 1999.

Proactive psychosocial care of blood or marrow transplant patients.

PURPOSE: The authors describe a proactive model of psychosocial care for patients undergoing blood or marrow transplantation and their families. DESCRIPTION OF PROGRAM: This program for blood or marrow transplantation patients, developed at the Center for Cancer Treatment and Research, Richland Memorial Hospital, and the University of South Carolina School of Medicine in Columbia, South Carolina, involves pretransplant comprehensive psychosocial assessment; development and implementation of an individual psychosocial treatment plan; monitoring and medical management of neuropsychiatric problems; and psychotherapeutic sessions with a psychiatrist. These functions are achieved through the use of a multidisciplinary psychosocial team and ongoing consultation-liaison with the entire blood or marrow transplantation team. CLINICAL IMPLICATIONS: This positive, proactive model demonstrates significant benefit to patients, families, and the blood or marrow transplantation healthcare team. Benefits of this model are derived from psychosocial assessment during work-up, subsequent planning, and communication with the entire team, thus allowing early identification of problems and avoiding escalation and the likelihood of negative outcomes. Less energy is exerted and less resources expended when problems are resolved with early intervention rather than with intensive interventions during transplant. The psychosocial staff members develop strong relationships with patients and families before transplant, increasing the power of interventions and receptivity of the patient. The blood or marrow transplantation team benefits from the ongoing presence of psychosocial staff and the consistency of approaches offered by team members. An integral part of this approach is teaching psychosocial care to all staff members and modeling approaches to problems. Other blood or marrow transplantation centers and centers providing other intensive anticancer therapies may benefit by adapting this model into the day-to-day care of their patients.

Impact of parental anxiety on child emotional adjustment when a parent has cancer.

PURPOSE/OBJECTIVES: To describe the relationships among parent anxiety, child anxiety, and emotional adjustment in children who have a parent with cancer. DESIGN: Correlational. SETTING: A large cancer center in the southeastern United States. SAMPLE: Thirty-three child/parent with cancer dyads. METHODS: Research packets were mailed to child/parent dyads who agreed to participate in the study. Parents completed a demographic questionnaire, a Spielberger State-Trait Anxiety Scale, and a Personality Inventory for Children (PIC). Children completed the child version of the Spielberger State-Trait Anxiety Scale. MAIN RESEARCH VARIABLES: Parent anxiety, child anxiety, and child adjustment. FINDINGS: Children who have a parent with cancer and parents who have experienced cancer report significantly higher state and trait anxiety compared to a normed population sample. Parental reports on the PIC indicated that latency-aged children (i.e., 6-12 years) showed significantly greater internalization and somatic symptoms compared to the sample norm. Parent state anxiety was negatively correlated with children's internalization and somatic symptoms. Parental anxiety accounted for the greatest variance in child adjustment. IMPLICATIONS FOR NURSING PRACTICE: These study findings may provide nurses with a better understanding of the vulnerability of children who have a parent with cancer and can build a foundation for the development of supportive interventions for these children.

Quest. An intervention program for children whose parent or grandparent has cancer.

PURPOSE: The emotional strains and anxiety experienced by a family system when a parent or significant adult member has cancer are well documented. Furthermore, the literature suggests a need for an intervention program for children whose parent or grandparent has cancer. The current article describes Quest, an intervention program for children and teenagers whose parent or grandparent has cancer. Quest is designed to facilitate positive coping with a parent's or grandparent's cancer diagnosis, increase understanding about cancer, and promote more positive communication about the diagnosis within the family system. DESCRIPTION OF PROGRAM: Quest is a 2-hour, biannual evening program targeted to children and adolescents whose parent or grandparent has cancer and structured to include educational information as well as time for expression of feelings. RESULTS: The child, parent, and staff evaluations have been overwhelmingly positive and indicate the value of the program. CLINICAL IMPLICATIONS: This program might be useful to other clinicians who have limited time to address a small, but important population affected by a cancer diagnosis in a family member. The structure and organization of the program make efficient use of time, yet address major issues affecting the children.

A memorial service for families of children who died from cancer and blood disorders.

The grief of staff who work with dying children and the grief of family members after the death of a child has been widely documented. Interventions to facilitate grieving have been extensively developed for parents but less so for siblings and staff. This article describes one approach, a memorial service, for families and staff that has wide applicability for providing support after a death. The memorial service provides families and staff with a healing ritual of remembrance, a source of closure after the death, and a recognition of the relationships established between families and staff. The service particularly legitimizes the staff's grief experience. The organization, implementation, and evaluation of such a program is discussed.

Planning and organizing a multidisciplinary psychosocial oncology service.

Providing psychosocial care to patients with cancer and their families is a formidable task given the current fiscal environment in hospitals. As the pool of available resources shrinks and populations shift from inpatient to outpatient, psychosocial staff are challenged to find creative, versatile, and efficient ways to deliver quality services and programs. This article describes the efforts to plan and implement psychosocial care at a cancer center facing the constraints of limited staff and decreasing resources. The background of the project, the development and implementation of a strategic plan, and a 1-year evaluation of the attainment of the objectives in the plan are described. The success of this approach and implications for psychosocial staff at other institutions are discussed.

Developing, implementing, and evaluating a handbook for parents of pediatric hematology/oncology patients.

This article details the development of a parent handbook for pediatric hematology and oncology patients. The planning and content development are discussed. Adult learning principles were incorporated throughout the handbook. Use of the handbook in a pediatric cancer center is described. Both subjective and objective methods were used to evaluate the handbook. Results from the evaluation verify the value of the handbook to parents and give direction for future revisions of the handbook.

Good grieving--an intervention program for grieving children.

PURPOSE/OBJECTIVES: To describe a program for grieving children including the agenda, activities, and logistics of organizing the program. DATA SOURCES: Clinical observations and evaluations from the program; literature review. DATA SYNTHESIS: A series of four seasonal programs were designed to promote a child's normal grieving process and enhance adjustment to the loss. Programs are cyclic, children are grouped by age, and activities are intended to promote expression of feelings, understanding of the loss, and good coping skills. A concurrent program for caregivers facilitates family communication and support. CONCLUSIONS: The program demonstrated positive behavioral changes in grieving children and provides a model for other nurses to use in organizing similar programs. IMPLICATIONS FOR NURSING PRACTICE: Nurses should be familiar with key elements of children's grief and incorporate this into their practice, especially when caring for terminally ill patients who have children.

The effects of a support group on selected psychosocial outcomes of bereaved parents whose child died from cancer.

Group support for bereaved parents whose child died from cancer has been suggested as a means of helping parents express emotions about their loss and improve their coping. Using a quasi-experimental design, we sought to determine the selected psychosocial effects of participation in a support group for bereaved parents whose child died from cancer. Five bereaved parents completed the Emotions Profile Index, the Family Adaptability and Cohesion Evaluation Scales, and the Social Adjustment Scale Self-Report before and after the seven group sessions. No statistically significant differences were found. Descriptive data were analyzed from the co-therapists' process log and the participants' evaluation forms. The group process log revealed intense pain and grief over the loss of the child and the parents' conscious struggle to adapt to the present and prepare for the future. The discussions poignantly indicated the great extent to which the child's death had changed their lives. Using the group evaluation form parents reported high satisfaction with the group sessions. Tentative conclusions support the value of such a group in providing a forum for some bereaved parents to ventilate feelings and thoughts and validate the normalcy of their reactions.

The aftermath of bone marrow transplant for parents of pediatric patients: a post-traumatic stress disorder.

PURPOSE/OBJECTIVES: To describe the characteristics of a child's bone marrow transplant (BMT) experience that may precipitate a post-traumatic stress disorder (PTSD) in the parent. DATA SOURCES: Published articles, books, and the authors' clinical experience. DATA SYNTHESIS: When viewed from the PTSD framework, parental reactions to a child's BMT offer striking parallels that include assessment of the event as traumatic, re-experiencing the event, intrusive thoughts, and a variety of emotional and cognitive responses. Interventions based on PTSD research can be implemented in clinical settings to diminish and treat these responses. CONCLUSIONS: The PTSD framework holds promise for healthcare providers in devising strategies to help families of children undergoing BMT to cope with the experience. IMPLICATIONS FOR NURSING PRACTICE: Nurses can use orientation, education, coaching, and peer support to help families before BMT and debriefing and counseling after BMT.

Developing and implementing a bereavement program for a children's hospital.

The grief of parents after the loss of a child is well recognized. However, the concept of grief in children after the loss of a sibling or a parent has been accepted only recently. This paper describes the development and implementation of a bereavement program for staff and families in a children's hospital. The program is unique in that support is provided to both staff and families. Data gathering, goals of the program, the phases of implementation, and the specific components of support for each group are described. Initial efforts in evaluating the program and implications for the future are discussed.

A trajectory approach for education of the child/adolescent with cancer.

Survival in childhood cancer has improved, but the child's learning capability and psychosocial adjustment are affected by intense therapy, the side effects, and psychosocial issues. The resulting problems of school attendance and performance need to be addressed by pediatric oncology nurses. This article describes an education intervention program that is based on a treatment trajectory with interventions that occur from diagnosis through long-term survival and are directed toward the patient/parent, school personnel, and classmates. Both anecdotal and empirical evaluations of the program are being completed. This program provides pediatric oncology nurses with a model for program development and resource materials.

The effects of group therapy on bereaved extended family of children with cancer.

The impact of the death of a child from cancer and subsequent grief on the extended family members has not been documented. Additionally, the effect of a support group for these individuals has not been explored. Therefore, this one group pretest/post-test study sought to determine the effects of participation in a support group for bereaved extended family members whose child died from cancer. Extended family members completed the Emotions Profile Index before and after the group sessions. Descriptive data were collected from the cotherapists' process log and the participants' evaluation. No significant differences were found between pretest and post-test scores for any emotional state. However, the group process log showed significant clinical data related to the intensity of the grief experienced and ways of coping with the loss. The Bereaved Extended Family Group Evaluation demonstrated the usefulness of the group experience. Tentative conclusions support the value of such a group in providing a forum for the bereaved extended family to ventilate feelings of anger and sadness and find ways to cope with the future.