Advanced parental cancer and adolescents: Parenting issues and challenges.

BACKGROUND: An estimated 609,820 child-rearing adults in 2023 died from advanced cancer, affecting 153,675 dependent children. Although children are known to suffer significant distress when a parent is diagnosed with cancer, few studies have described parents' views of their adolescent's behavioral response to their advanced cancer or what the parent did to interpret or manage that response. OBJECTIVES: To describe patient-reported concerns about their adolescent and how they responded to their adolescent's behavior. METHODS: Single occasion interviews were administered to 6 adolescent-rearing parents with Stage IV cancer. Interviews were analyzed using inductive content analysis by trained coders. Trustworthiness of results was protected through peer debriefing, coding to consensus, and maintaining an audit trail. RESULTS: The core construct that explained study data was Being There without Taking Over, comprised of 4 domains: Struggling to Read My Child, Attempting to Talk with My Child about My Cancer, Trying to Maintain Optimism, and Understanding My Child. CONCLUSIONS: Parents were deeply concerned about the impact of their advanced cancer on their adolescent but were unable to distinguish between cancer-related distress and adolescent angst. They feared initiating cancer-related discussions and struggled with their own feelings of guilt and parental inadequacy but did not turn to professionals for help. SIGNIFICANCE OF RESULTS: Adolescent-rearing patients with advanced disease need to be triaged into services that offer a framework from which parents can interpret their child's behavior and learn ways to have adolescent-appropriate conversations about the cancer. Such services should also help parents gain skills to manage feelings of parental inadequacy and guilt. In the absence of services, parents struggle and do not know how to interpret and respond to their adolescent's cancer-related behavior.

Survivorship Care for Women Living With Ovarian Cancer: Protocol for a Randomized Controlled Trial.

BACKGROUND: Ovarian cancer ranks 12th in cancer incidence among women in the United States and 5th among causes of cancer-related death. The typical treatment of ovarian cancer focuses on disease management, with little attention given to the survivorship needs of the patient. Qualitative work alludes to a gap in survivorship care; yet, evidence is lacking to support the delivery of survivorship care for individuals living with ovarian cancer. We developed the POSTCare survivorship platform with input from survivors of ovarian cancer and care partners as a means of delivering patient-centered survivorship care. This process is framed by the chronic care model and relevant behavioral theory. OBJECTIVE: The overall goal of this study is to test processes of care that support quality of life (QOL) in survivorship. The specific aims are threefold: first, to test the efficacy of the POSTCare platform in supporting QOL, reducing depressive symptom burden, and reducing recurrence worry. In our second aim, we will examine factors that mediate the effect of the intervention. Our final aim focuses on understanding aspects of care platform design and delivery that may affect the potential for dissemination. METHODS: We will enroll 120 survivors of ovarian cancer in a randomized controlled trial and collect data at 12 and 24 weeks. Each participant will be randomized to either the POSTCare platform or the standard of care process for survivorship. Our population will be derived from 3 clinics in Texas; each participant will have received some combination of treatment modalities; continued maintenance therapy is not exclusionary. RESULTS: We will examine the impact of the POSTCare-O platform on QOL at 12 weeks after intervention as the primary end point. We will look at secondary outcomes, including depressive symptom burden, recurrence anxiety, and physical symptom burden. We will identify mediators important to the impact of the intervention to inform revisions of the intervention for subsequent studies. Data collection was initiated in November 2023 and will continue for approximately 2 years. We expect results from this study to be published in early 2026. CONCLUSIONS: This study will contribute to the body of survivorship science by testing a flexible platform for survivorship care delivery adapted for the specific survivorship needs of patients with ovarian cancer. The completion of this project will contribute to the growing body of science to guide survivorship care for persons living with cancer. TRIAL REGISTRATION: ClinicalTrials.gov NCT05752448; https://clinicaltrials.gov/study/NCT05752448. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/48069.

An exploration of financial toxicity among low-income patients with cancer in Central Texas: A mixed methods analysis.

OBJECTIVE: Financial toxicity is of increasing concern in the United States. The Comprehensive Score for Financial Toxicity (COST) is a validated measure; however, it has not been widely utilized among low-income patients and may not fully capture financial toxicity in this population. Furthermore, the relationships between financial toxicity, quality of life (QOL), and patient well-being are poorly understood. We describe the experience of financial toxicity among low-income adults receiving cancer care. We hypothesized that higher financial toxicity would be associated with less income and lower quality of life. Qualitative interviews focused on the financial impact of cancer treatment. METHOD: This study was conducted at a cancer clinic in Central Texas. Quantitative and qualitative data were collected in Fall and Spring 2018, respectively. The quantitative sample (N = 115) was dichotomized by annual income (<$15,000 vs. >$15,000). Outcomes included financial toxicity (COST), quality of life (FACT-G), and patient well-being (PROMIS measures: Anxiety, Depression, Fatigue, Pain Interference, and Physical Function). Associations between quality of life, patient well-being, and financial toxicity were evaluated using linear regression. Sequential qualitative interviews were conducted with a subsample of 12 participants. RESULTS: Patients with <$15k had significantly lower levels of QOL and patient well-being such as depression and anxiety compared to patients with >$15k across multiple measures. A multivariate linear regression found QOL (Β = 0.17, 95% CI = 0.05, 0.29, p = 0.008) and insurance status (Β = -3.79, 95% CI = -7.42, -0.16, p = 0.04), but not income, were significantly associated with financial toxicity. Three qualitative themes regarding patient's access to cancer care were identified: obtaining healthcare coverage, maintaining financial stability, and receiving social support. SIGNIFICANCE OF RESULTS: Low-income patients with cancer face unique access barriers and are at risk for forgoing treatment or increased symptom burdens. Comprehensive assessment and financial navigation may improve access to care, symptom management, and reduce strain on social support systems.

Interprofessional collaboration between social workers and community health workers to address health and mental health in the United States: A systematised review.

Collaboration between social workers (SW) and community health workers (CHW) plays an essential role in addressing health inequities in the United States (US). However, little is known about the current state of CHW/SW collaboration. The objectives of this review were to identify (a) the nature, goals and setting of CHWs and SW collaboration; (b) the patient outcomes utilised to measure intervention efficacy. The literature search was conducted in December 2020 using six databases. The inclusion criteria were (1) interventions that included CHWs and SWs; (2) US-based; (3) published between 2000-2020; (4) peer-reviewed journal articles; (5) examining health or mental health outcomes. Search results identified 281 articles, and 15 were included in the final analysis. Settings that utilised SW/CHW collaboration included outpatient clinics (n = 10); community organisations (n = 4) or hospital (n = 1). CHW and SW interventions focused on disease prevention (n = 8), chronic care (n = 4) and mental health (n = 3). Health outcomes were the most evaluated (n = 13), and significant improvement of at least one health outcome was reported in those studies. Mental health outcomes (n = 3) were also significantly improved, while social determinants of health (n = 2) were least common and descriptive only. This is the first review of SW and CHW collaboration. Clarity regarding SW and CHW roles and scopes of practice are needed to understand better SW/CHW collaboration and its impacts on community health outcomes and improve the process of collaboration. SW and CHW collaboration may increase clients' access to preventive care, mental health and address health inequities.

Wonders & Worries: A randomized clinical trial of a psychosocial intervention for children who have a parent with cancer.

OBJECTIVE: The aim of this study was to test the effectiveness of Wonders & Worries, a psychosocial intervention for children who have a parent with cancer. Primary goals were to improve family quality of life, functioning and communication skills as reported by parent and child, enhance children's emotional/behavioral adjustment and parenting efficacy, while decreasing parenting concerns and ill parents' depression and anxiety. METHODS: Sixty families were recruited from a community based non-profit agency. Parents diagnosed with Stage I-III cancer and their children ages 5-14 years were enrolled and randomized into intervention (n = 32) or wait-list control groups (n = 28). Families received 2 parent consults, six weekly 1-h individual child sessions, and 1 treatment center tour. The intervention was comprised of an age-appropriate understanding of cancer and expression of feelings, coping skills to ease feelings related to parent's cancer and enhanced ability to communicate about the disease. Controls received parent consult and access to W & W resources. Data were obtained from standardized measures at baseline; 6 and 10 weeks follow up. RESULTS: Intervention group significantly improved on parenting concerns, parenting self-efficacy, and family quality of life. Children in the intervention group had significantly lower emotional and behavioral problems and worries related to cancer compared to controls. The intervention failed to significantly affect ill parent's anxiety, depressed mood, family functioning and child's anxiety. CONCLUSIONS: The Wonders & Worries intervention promoted positive adaptation for ill parents and their children. This intervention is promising enough to warrant further refinement and testing with larger, more diverse samples.

Patient reported outcomes affecting quality of life in socioeconomically disadvantaged cancer patients.

PURPOSE: The aim of this study was to identify correlates of quality of life (QOL) for socioeconomically disadvantaged cancer patients receiving care in the "safety net" health system. DESIGN: This cross-sectional study used linear regressions to determine the effect of patient reported outcome measures (PRO) on QOL.Sample/Methods: Cancer patients (n = 115) receiving drug therapy completed a series of PROs including: Functional Assessment of Cancer Therapy (FACT-G), PROMIS (Anxiety, Depression, Fatigue, Pain Interference, and Physical Function), and the Comprehensive Score for Financial Toxicity. FINDINGS: More than 60% of patients reported an annual income below $24,999. Forty-five percent of patients were either uninsured or county-funded. Depression, pain, and financial toxicity were found to be consistently significant correlates of QOL.Implications: Cancer patients with existing financial strain have unique psychosocial stressors. This study provides insight into the relationship between these stressors, and the need for targeted screening and intervention that address such aspects of care.

Marital Transitions, Change in Depressive Symptomology, and Quality of Social Relationships in Midlife and Older U.S. Adults: An Analysis of the Health and Retirement Study.

Preventing negative health outcomes following marital transitions can promote personal recovery and well-being. We used the Health and Retirement Study (HRS) (2012, 2014) to test whether social relationship quality moderated the association between marital transition and change in depressive symptomology among U.S. adults aged 50 and older (n = 3,705). Marital status transitions between 2012 and 2014 included remained married/partnered, divorced/separated, and widowed. Depressive symptomology was measured using the Center for Epidemiological Studies Depression Scale 8 Short Form (CES-D 8). Social support, social contact, and social strain were indicators of social relationship quality. Change in depressive symptomology was modeled using autoregressive multiple regression. Social relationship quality appeared to influence depressive symptomatology for those experiencing divorce/separation. Compared to individuals who remained married/partnered, depressive symptomatology in those experiencing separation/divorce decreased among those reporting low social support, increased among those reporting high social support, and increased among those who reported low social strain. Limitations and clinical implications are discussed.

Social work leadership in a medical school: A coordinated, compassionate COVID-19 response.

The COVID-19 pandemic has exposed the systemic inequities in our health care system and society has called for actions to meet the clinical, psychosocial and educational needs in health care settings and communities. In this paper we describe how an organized Department of Health Social Work in a medical school played a unique role in responding to the challenges of a pandemic with community, clinical, and educational initiatives that were integral to our community's health.

Enhancing Connections-Palliative Care: A Quasi-Experimental Pilot Feasibility Study of a Cancer Parenting Program.

Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing Connections-Palliative Care (EC-PC) parenting program was developed in response to this gap. Objective: (1) Assess the feasibility of the EC-PC parenting program (recruitment, enrollment, and retention); (2) test the short-term impact of the program on changes in parent and child outcomes; and (3) explore the relationship between parents' physical and psychological symptoms with program outcomes. Design: Quasi-experimental two-group design employing both within- and between-subjects analyses to examine change over time and change relative to historical controls. Parents participated in five telephone-delivered and fully manualized behavioral intervention sessions at two-week intervals, delivered by trained nurses. Behavioral assessments were obtained at baseline and at three months on parents' depressed mood, anxiety, parenting skills, parenting self-efficacy, and symptom distress as well as children's behavioral-emotional adjustment (internalizing, externalizing, and anxiety/depression). Subjects: Parents diagnosed with advanced or metastatic cancer and receiving noncurative treatment were eligible for the trial provided they had one or more children aged 5-17 living at home, were able to read, write, and speak English, and were not enrolled in a hospice program. Results: Of those enrolled, 62% completed all intervention sessions and post-intervention assessments. Within-group analyses showed significant improvements in parents' self-efficacy in helping their children manage pressures from the parent's cancer; parents' skills to elicit children's cancer-related concerns; and parents' skills to help their children cope with the cancer. Between-group analyses revealed comparable improvements with historical controls on parents' anxiety, depressed mood, self-efficacy, parenting skills, and children's behavioral-emotional adjustment. Conclusion: The EC-PC parenting program shows promise in significantly improving parents' skills and confidence in supporting their child about the cancer. Further testing of the program is warranted.

Community-Academic Partnerships: Approaches to Engagement.

Current public health problems such as cancer have an expansive set of lifestyle and social circumstances that affect the cause and course of the disease. In response, over the past 7 years, the National Cancer Institute (NCI) has recognized the important role that cancer centers play in their community and has gradually increased the requirements and stringency of these sections in the Cancer Center Support Grant guidelines to include a plan for community outreach and engagement. Developing sustainable community-academic partnerships is an essential factor for the successful dissemination and implementation of promising interventions and programs aimed at decreasing barriers and improving cancer outcomes. Understanding how best to facilitate linkages and collaboration can expedite translation of research knowledge into practice and allow more evidence-based improvements to be implemented into practice as well as influence research agendas. This article will examine several examples of successful community-academic partnerships focused on cancer prevention and control and explore lessons learned.

Wonders & Worries: evaluation of a child centered psychosocial intervention for families who have a parent/primary caregiver with cancer.

OBJECTIVE: Scant evidence exists to guide interventions for children who have a parent with cancer. This study evaluated the outcomes of a community based psychosocial intervention targeted to children dealing with parental or primary caregiver cancer. This curriculum provided an age-appropriate understanding of the illness, facilitated the expression of feelings, identified individual coping skills to help ease feelings related to parent's cancer, and enhanced the family's ability to communicate about the disease. METHODS: Families whose children participated in the six-week curriculum-based intervention completed a questionnaire that included demographic information, a five-item assessment of changes in parenting abilities, and a nine-item assessment of changes in children's behavioral issues. The prevalence of each reported item was determined through a secondary analyses of cross-sectional data derived from a multi-year sample of these survey results. RESULTS: A sample of 156 families responded to the survey between 2009 and 2014. A majority of families described improvement in all five areas of parenting abilities assessed including communication skills and confidence in parenting. Amelioration of multiple children's issues was reported including improved communication skills (87%), reduced anxiety (84%), increased feeling of security at home (90%), and improved school performance (73%). CONCLUSIONS: The results reported here suggest that this child centered psychosocial intervention promoted positive adaptation by actively supporting families and children while a parent/primary caregiver coped with a cancer diagnosis. Future research is planned utilizing a randomized controlled study design to formally evaluate the effectiveness and preventative impact of this manualized six-week curriculum. Copyright © 2016 John Wiley & Sons, Ltd.

Psychosocial Follow-Up in Survivorship as a Standard of Care in Pediatric Oncology.

Childhood cancer survivors (CCS) have a high risk of medical late effects following cancer therapy. Psychosocial late effects are less often recognized. Many CCS do not receive long-term follow-up (LTFU) care, and those who do are rarely screened for psychosocial late effects. An interdisciplinary team conducted a systematic review of qualitative and quantitative studies to assess social, educational, vocational, psychological, and behavioral outcomes along with factors related to receipt of LTFU care. We propose that psychosocial screening be considered a standard of care in long-term follow-up care and that education be provided to promote the use LTFU care starting early in the treatment trajectory.

The experience of adolescents who have a parent with advanced cancer: A phenomenological inquiry.

OBJECTIVE: Adolescents are considered the group most susceptible to negative psychosocial outcomes when faced with a parent's illness. However, there has been extremely limited research on the adolescent's adjustment to advanced parental cancer. The aim of our study was to gain understanding of the experiences of adolescents, in their own words, to gather pilot data about the needs of this population that will be valuable in developing interventions for adolescents facing parental cancer. METHOD: A hermeneutic phenomenological approach was applied using in-depth semistructured interviews to inquire about adolescents' experiences. Some 10 adolescents (7 males, 3 females) aged 14-17 were interviewed. RESULTS: Four essential themes about adolescents living with a parent's advanced cancer emerged from the analysis: "life interrupted," "being there," "managing emotions," and "positives prevail." These findings underscore the significant impact an advanced cancer diagnosis can have on a family unit and suggest that the experience may also have the potential of creating opportunities for growth and well-being. Our findings reinforce previous results that advocate for the importance of family and peer support, positive attitude, and open communication when a family is coping with advanced parental cancer. SIGNIFICANCE OF RESULTS: Understanding how adolescents gain strength from their relationships with family and peers offers healthcare professionals an opportunity to have services and strategies in place to foster these relationships.

The adolescent's experience when a parent has advanced cancer: A qualitative inquiry.

BACKGROUND: Parental cancer is a stressful experience for young people, constituting a potential threat to physical and mental health and normative development. Currently, there is insufficient information describing the sources and nature of this distress during advanced parental cancer, especially concerning families with adolescent children. AIM: To address the significant gap in the literature by providing the adolescent's perspective on the impact of their parent's advanced cancer on their lives. DESIGN: This qualitative study involved single-occasion, semi-structured elicitation interviews with adolescents whose parents were diagnosed with advanced stage cancer. SETTING/PARTICIPANTS: The study sample consisted of seven adolescents from six families, five females and two males ranging in age from 11 to 15 years (mean = 13.6 years, standard deviation = 1.4 years). The ill parents consisted of four females and two males diagnosed with Stage IV cancer. RESULTS: The core construct that organized study results was Weaving a Normal Life with Cancer which involved five major domains: feeling the weight of the world on my shoulders; cancer changes everything; confronting or getting away from the cancer; talking about it; and cancer was a positive for me … it taught me. CONCLUSION: Study findings shed light on how adolescents self-manage their parent's advanced cancer and work to delimit the illness even as they are aware of its constant presence. Future research and intervention studies are needed to support and add to the adolescents' self-management strategies to weave a normal life for themselves while in the throes of the cancer's uncertainty and challenges with family communication.

Enhancing collaborative leadership in palliative social work in oncology.

The Institute of Medicine (IOM) Report-Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs-provided recommendations for meeting the palliative care needs of our growing population of older Americans. The IOM report highlights the demand for social work leadership across all aspects of the health care delivery system. Social workers are core interdisciplinary members of the health care team and it is important for them to be well prepared for collaborative leadership roles across health care settings. The ExCEL in Social Work: Excellence in Cancer Education & Leadership education project was created as a direct response to the 2008 IOM Report. This article highlights a sampling of palliative care projects initiated by outstanding oncology social work participants in the ExCEL program. These projects demonstrate the leadership of social workers in palliative care oncology.

Adolescents living with a parent with advanced cancer: a review of the literature.

OBJECTIVE: Families and children facing the death of a parent from cancer constitute a vulnerable population often overlooked by healthcare professionals and researchers. The purpose of this review is to provide a systematic analysis of the literature that examines the experiences of parents diagnosed with advanced cancer and their adolescent children. METHODS: Reviews of quantitative, qualitative, and mixed method publications between 2000 and 2013 were selected in order to obtain the most current and timely studies. Articles published before 2000 but found to be seminal works on this topic were also included. No time limits were set on intervention studies. RESULTS: Eighteen studies met the criteria for the content of this review, indicating the limited number of studies conducted on this topic. Articles were summarized using the following categories: original research on the impact on the family and parenting, original research on the impact on the child/adolescent, and interventions for families facing incurable cancer. The analysis was organized around the major themes found in the literature within each category. CONCLUSIONS: These themes will allow healthcare professionals to understand implications for clinical practice and apply the knowledge gained from this analysis of literature to guide future research.

Understanding the lived experience of Latino adolescent and young adult survivors of childhood cancer.

PURPOSE: The purpose of this study was to investigate the experience of surviving cancer for Latino adolescents and young adult (AYA) survivors of pediatric cancer. METHODS: Using a phenomenological approach, this study focused on the experience of cancer survivorship through in-depth interviews with 14 Latino AYA survivors (16-29 years) diagnosed as young children (0-15 years) and at least 1 year post-treatment RESULTS: Four essential themes about the Latino AYA experience as childhood cancer survivors emerged from analysis: borrowed strength of family and hospital staff; sustained positive attitude; perceived vulnerability; branded a cancer survivor. According to these participants, the lived experience of surviving cancer was predominately positive. These emerging adults were able to focus on the positive lessons learned from their cancer experience such as the importance of personal relationships and an optimistic outlook on life. Yet, it was clear that long after these survivors had been labeled "cured" by the medical team, cancer continued to be a large part of their existence. CONCLUSIONS: The results indicate that these emerging adults faced their cancer experience with optimism, leaned on relationships with family and health care professionals, and demonstrated resilience through their cancer treatment and beyond. IMPLICATIONS FOR CANCER SURVIVORS: This unique description of Latino survivors' experiences demonstrates that they simultaneously face uncertainty and identify positive influences of the cancer experience in particular unwavering familial support. These findings provide opportunities for health care providers to better understand this rapidly growing population and to create culturally resonant programs that can promote their long-term health and well being.