Reflections: a Daughter's Experience of Parental Cancer and the Beginnings of Un Abrazo Para La Familia™.

The author describes her impetus and journey in developing Un Abrazo Para La Familia™ [Embracing the Family] (Abrazo), 3 hours of cancer information presented in an educational and modular format and designed for low-income informal caregivers who are co-survivors of cancer. A rehabilitation-informed preventive intervention, Abrazo reflects the importance of family, culture, and socioeconomic background in its approach.

Exploring the Experiences of University Students with a History of Cancer: A Pilot Study.

This exploratory pilot study aims to provide preliminary data describing the experiences of university student cancer survivors, quantify their connection to the campus Disability Resource Center, and assess the feasibility of conducting research with this population. In this descriptive study of cancer survivor students at one large university in the southwestern U.S., online survey respondents with a history of cancer (N = 19) reported cognitive, emotional, and physical limitations that affected their educational experience. The majority (78.9%) of our participants were children, adolescents, or young adults (up to age 39) when diagnosed with cancer; all others were diagnosed between 40 and 60 years old. We found that students living with cancer have short- and long-term impairments, including memory issues that made academic performance difficult. These effects led some students to cope individually while others sought support from institutional entities or instructors. Here we document survivor experiences and propose next steps in research, which includes an intervention that builds on our preliminary findings and uses the positive deviance model.

The Evolution of Un Abrazo Para La Familia: Implications for Survivors of Cancer.

Un Abrazo Para La Familia™ (Abrazo) is a 3-h modular preventive intervention designed for low-income caregivers who are co-survivors of cancer. Here we (1) consider the benefit to survivors of cancer, that is, the care recipients who participate in Abrazo; (2) summarize the literature specific to research outreach to low-income, underserved populations when they are faced with cancer; and (3) describe current steps being taken in Southern Arizona to reach these populations via Abrazo. Specific to considering the benefit to care recipients, we analyzed care recipient data derived from three existing cohorts of Abrazo participants. Analyses of the combined cohorts of these data demonstrate that Abrazo is effective with care recipients given statistically significant higher cancer knowledge and self-efficacy scores, pre- vs. post-intervention. We can now report benefit to care recipients who participate in Abrazo. This allows us, with confidence, to expand research recruitment efforts to include care recipients as part of the Abrazo intervention in our efforts to serve low-income, underserved populations when faced with cancer.

Oregon's Familias en Acción replicates benefits for underserved cancer co-survivors through Un Abrazo Para la Familia.

OBJECTIVE: Our goal in this study was to determine if we could replicate initial findings when providing the intervention, Un Abrazo Para La Familia ("Abrazo"). Abrazo is a community-focused psychoeducational preventive intervention addressing the cancer information and coping needs of low-income, underserved family members of cancer survivors, developed and first implemented in Tucson, Arizona. METHODS: We used a preintervention and postintervention evaluation design to assess the effectiveness of replicating the Abrazo intervention with underserved Hispanic/Latino family members facing cancer as co-survivors. We describe lessons learned in an expansion of Abrazo from one region of the United States to another. RESULTS: Portland promotoras demonstrated that when the Abrazo intervention is provided via a culturally congruent, accessible format, the significant gains in cancer knowledge and self-efficacy reported by underserved co-survivors can be replicated. This is important because Oregon represents a US region different from Abrazo's origins in the Southwest. CONCLUSION: Our replication study provides a useful roadmap for others focusing on the psychosocial needs of Hispanic/Latino cosurviving family members of cancer. A manualized 12-hour training program based on the initial discovery and efficacy work was developed to train promotoras as a part of this study. The manual provides a clear protocol for others to replicate our intervention and evaluation procedures. Abrazo may be particularly important for family-centered care if the family does not have the cancer knowledge or self-confidence needed to fully participate.

Family-Focused Preventive Interventions With Cancer Cosurvivors: A Call to Action.

Health promotion and preventive action in the context of public health interventions for highly prevalent, long-term conditions such as cancer are rarely geared toward the family as a whole. Yet family members, as cancer cosurvivors, must manage their own substantial stress and multiple caregiving responsibilities and often constitute a critical nexus between individual patients and clinicians. We drew on 2 examples of cancer cosurvivorship from 2 different health service contexts, the United States and Finland. A systemic approach in public health is needed to support family members who not only have to confront the meaning of long-term conditions such as cancer but also may have to manage concurrent social life challenges and stressors such as economic hardship.

Un Abrazo Para La Familia: an evidenced-based rehabilitation approach in providing cancer education to low-SES Hispanic co-survivors.

We discuss Un Abrazo Para La Familia as an effective, rehabilitation-informed evidence-based model of education, information-sharing, and skill teaching for use with low-income Hispanic co-survivors of cancer. Over 2 years, 120 co-survivors participated in the intervention. The majority of participants (96 %) were women and all but one reported being Hispanic. Both in years 1 and 2, we followed the same pre- and post-intervention evaluation design. Based on pre- and post-intervention assessments of cancer-related knowledge and self-efficacy, the percentage of questions answered correctly about cancer significantly increased for co-survivors. Self-efficacy significantly increased as well. Using item analysis, we explored skill teaching as a mechanism for the effective delivery of Un Abrazo and recommend the use of promotoras in providing the intervention. Of the 12 cancer knowledge items resulting in statistically significant increases of cancer knowledge, 5 were taught via interactive skill teaching. Given the projected rise in the incidence of cancer in Hispanic populations, coupled with the fact that people from low-income backgrounds face unique challenges in cancer prevention and management, implications of the Un Abrazo model for future research and policy regarding cancer and families are considered.

Un Abrazo Para La Familia: providing low-income Hispanics with education and skills in coping with breast cancer and caregiving.

OBJECTIVE: Un Abrazo Para La Familia (A Hug for the Family) is an intervention designed to increase the accessibility of cancer information to low-income and medically underserved co-survivors of cancer. Co-survivors are family members or friends of an individual diagnosed with cancer. Our goal was to increase socio-emotional support for these co-survivors and improve skills in coping with cancer. The purpose of our pilot study was to explore the effectiveness of the intervention in increasing cancer knowledge and self-efficacy among co-survivors. METHODS: Un Abrazo consisted of three one-hour sessions, in either Spanish or English. Sessions were delivered by a trained promotora (community health worker), in partnership with a counselor. Sixty participants completed measures of cancer knowledge and self-efficacy preceding (pre-test) and following the intervention (post-test). RESULTS: From pre-test to post-test, the percentage of questions answered correctly about cancer knowledge increased (p < 0.001), as did ratings of self-efficacy (p < 0.001). Decreases were seen in 'Do not know' responses for cancer knowledge (p < 0.01), with a negative correlation between number of 'Do not knows' on cancer knowledge at pre-test and ratings of self-efficacy at pre-test (r = -0.47, p < 0.01). CONCLUSIONS: When provided an accessible format, co-survivors of cancer from underserved populations increase their cancer knowledge and self-efficacy. This is notable because research indicates that family members and friends with increased cancer knowledge assume more active involvement in the cancer care of their loved ones.

"Like a Mexican wedding": psychosocial intervention needs of predominately Hispanic low-income female co-survivors of cancer.

Although recent work has recognized that the influence and consequences of cancer extend beyond the individual receiving the diagnosis, no studies have focused on the specific psychosocial intervention needs of female co-survivors in low-income populations. In this qualitative study, the co-survivors, 16 women, representing 10 low-income families and predominately Hispanic, were interviewed about their experience of having someone in their family diagnosed with cancer. Several themes emerged from the data, including family stress, lack of skill in coping with the effects of cancer (e.g., depression of their loved one), a need for financial help, a willingness to share with others, and reliance on faith to see them through the cancer experience. Whereas no agreement existed as to where and how to provide an intervention, participants reported that tailoring an intervention to family needs and delivering it in a way that was accessible to them was important.

Implementation of Un Abrazo Para La FamiliaTM in southern Arizona with extension to survivors and assessment of effects on distress.

Introduction: Un Abrazo Para La FamiliaTM [Embracing the Family] (Abrazo) is a 3-hr psychoeducational intervention designed for low-income informal caregivers who are cosurvivors of cancer. A rehabilitation-informed preventive intervention, Abrazo reflects the importance of family, culture, and socioeconomic background. A pilot study was conducted to inform a larger geographic implementation of Abrazo. The aims were to determine if previous outcomes of increased cancer knowledge and self-efficacy could be replicated and to investigate intervention effects on distress. Method: A pretest-posttest design was used to assess changes in cancer knowledge, self-efficacy, and distress for Abrazo participants. Distress was measured with the American Medical Association's Caregiver Assessment (Epstein-Lubow et al., 2010) and the National Comprehensive Cancer Network Distress Thermometer (Donovan et al., 2014; Forsythe et al., 2013; Fulcher & Gosselin-Acomb, 2007). The Patient Health Questionnaire-4 (PHQ-4) (Kroenke et al., 2009) measured symptoms of anxiety and depression. Results: Both survivors (n = 37) and cosurvivors (n = 103) increased in cancer knowledge and self-efficacy after completing Abrazo. Mean levels of distress and symptoms decreased for cosurvivors, but not for survivors. At study entry, 19% of cosurvivors and 12% of survivors scored ≥6/12 on the PHQ-4, the standard cutoff for clinically significant symptoms. Only 13% of cosurvivors, but 30% of survivors exceeded this threshold at three-month follow-up. Elevated symptoms persisted in 12% of survivors from baseline to follow-up; in 18% of survivors, symptoms rose between baseline and follow-up. Discussion: Increased cancer knowledge and self-efficacy in participants replicates evidence of Abrazo's effectiveness. The result of decreased distress in cosurvivors extends our understanding of Abrazo's effectiveness with this population. The increase in distress in cancer survivors warrants further attention to their intervention needs. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Parental hospital-treated somatic illnesses and psychosis of the offspring-The Northern Finland Birth Cohort 1986 study.

AIM: The aim of this study was to investigate whether parental somatic illnesses during childhood increase the risk for later psychosis in the offspring. In addition, we examined which parental illnesses in particular are associated with increased risk of psychosis in the offspring. METHOD: The data of the Northern Finland Birth Cohort 1986 (NFBC 1986), included 9137 children born alive in northern Finland between the July 1, 1985, and the June 30, 1986. Information regarding the parents' somatic morbidity was collected through various healthcare registers up to age 28 of the cohort members. RESULTS: Psychosis was diagnosed in 169 (1.8%) of the cohort members between the ages of 16 and 28. Accumulation of parental somatic diseases was related to later psychosis in the offspring. In addition, some specific somatic diagnostic groups of parents were emphasized in relation to psychosis in the offspring. CONCLUSIONS: Our study findings indicated that parental somatic illness should be taken into account in the prevention of serious mental health problems in their offspring.

Indigenous ways of knowing: implications for participatory research and community.

Researchers have a responsibility to cause no harm, but research has been a source of distress for indigenous people because of inappropriate methods and practices. The way researchers acquire knowledge in indigenous communities may be as critical for eliminating health disparities as the actual knowledge that is gained about a particular health problem. Researchers working with indigenous communities must continue to resolve conflict between the values of the academic setting and those of the community. It is important to consider the ways of knowing that exist in indigenous communities when developing research methods. Challenges to research partnerships include how to distribute the benefits of the research findings when academic or external needs contrast with the need to protect indigenous knowledge.

The spaces between: partnerships between women researchers and Indigenous women with disabilities.

PURPOSE: To understand the experiences of Indigenous Australian women with chronic illnesses and disabilities and their views about a way forward in relation to partnerships in research and community-supported problem-solving. METHOD: Using a participatory action research framework, five Indigenous women participated in a group meeting and interviews with academic women researchers to discuss their health and disabilities in order to generate solutions that could address health disparities among Indigenous women. RESULTS: Five themes describe the experiences of these Indigenous women when considering their personal histories, interactions with formal service systems, and their aspirations for the future: (i) Ongoing influence of history, (ii) systemic lack of respect, (iii) social context of health, (iv) moving forward in positive ways, and (v) research partnerships as a way forward. The data raised critical questions about the role of research, including, 'Who has the right to tell the stories of the women?'. CONCLUSIONS: We show how a small research project conducted in collaboration with five Indigenous women developed into a significant research partnership and resulted in a better understanding of the issues that must be addressed by research in future. It is suggested that through such partnerships underserved women can best be served by research.

Differences in Transitional Care Provided to Mexican American and Non-Hispanic White Older Adults.

BACKGROUND: Transitional care, assisting patients to move safely through multiple health care settings, may be insufficient for older Hispanic patients. PURPOSE: Describe home health care services referral rates for Hispanic and non-Hispanic White (NHW) patients and factors that influence case managers' (CMs') discharge planning processes. DESIGN: Organized by the Ethno-Cultural Gerontological Nursing Model, health records were reviewed ( n = 33,597 cases) and supplemented with qualitative description ( n = 8 CMs). FINDINGS: Controlling for gender, insurance type, age, and hospital length of stay, NHW older adults received more home health care services referrals (odds ratio = 1.23). Insurance coverage was the most frequent determinant of CMs' post-hospital care choices, rather than patients' being Hispanic. NHW older adults were more likely to have insurance than Hispanic older adults. IMPLICATIONS: Insurance coverage being CMs' primary consideration in determining patients' dispositions is a form of systems-level discrimination for Hispanic vulnerable groups, which combined with other hospital-level constraints, should be addressed with policy-level interventions.

Information and support for co-survivors during or after cancer treatment: Consideration of Un Abrazo Para la Familia as a model for family-focused intervention in cancer rehabilitation.

OBJECTIVE: The development and evaluation of Un Abrazo Para La Familia, [A Hug for the Family] is described. Un Abrazo is discussed as an effective model of education, information-sharing, and skill-building for use with low-income co-survivors of cancer. PARTICIPANTS: Sixty co-survivors participated. The majority were women and all reported being Hispanic. METHODS: Using quantitative data (N=60), the needs, concerns, and characteristics of the co-survivor population served through Un Abrazo are presented. Further, we offer three qualitative case studies (with one co-survivor, one survivor, and one non-participant) to illustrate the model and its impact. RESULTS: The median level of education level of co-survivors was 12 years. The majority were unemployed and/or identified as homemakers, and indicated receipt of services indicating low-income status. Half reported not having health insurance. The top four cancer-related needs or concerns were: Information, Concern for another person, Cost/health insurance, and Fears. CONCLUSIONS: Recognizing the centrality of the family in addressing cancer allows for a wider view of the disease and the needs that arise during and after treatment. Key rehabilitation strategies appropriate for intervening with co-survivors of cancer include assessing and building upon strengths and abilities and making culturally-respectful cancer-related information and support accessible.

Considerations of culture and social class for families facing cancer: the need for a new model for health promotion and psychosocial intervention.

Cancer is a family experience, and family members often have as much, or more, difficulty in coping with cancer as does the person diagnosed with cancer. Using both family systems and sociocultural frameworks, we call for a new model of health promotion and psychosocial intervention that builds on the current understanding that family members, as well as the individuals diagnosed with cancer, are themselves survivors of cancer. We argue that considering culture, or the values, beliefs, and customs of the family, including their choice of language, is necessary to understand fully a family's response to cancer. Likewise, acknowledging social class is necessary to understand how access to, and understanding of, otherwise available interventions for families facing cancer can be limited. Components of the model as conceptualized are discussed and provide guidance for psychosocial cancer health disparities research and the development of family-focused, strength-based, interventions.

Culturally competent research with American Indians and Alaska Natives: findings and recommendations of the first symposium of the work group on American Indian Research and Program Evaluation Methodology.

This article describes the collective experience of a multidisciplinary network of researchers, practitioners, and program evaluators who support appropriate research and evaluation methods in working with Native peoples. Our experience underlines the critical importance of culture in understanding and conducting research with the diverse populations of American Indians and Alaska Natives, and documents the need for community-based, collaborative, participatory action research. We discuss the major findings of the first American Indian Research and Program Evaluation Methodology national symposium, and articulate a set of 20 guiding principles for conducting research and program evaluation.