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Purpose (1) To test the short-term impact of Helping Us Heal (HUSH), a telephone-delivered counseling program for spouse caregivers of women with breast cancer. (2) To compare outcomes from HUSH with outcomes from a historical control group which received the same program in-person. Methods Two-group quasi-experimental design using both within- and between-group analyses with 78 study participants, 26 in the within-group and 52 in the between-group analyses. Spouse caregivers were eligible if the wife was diagnosed within 8 months with stage 0–III breast cancer and were English-speaking. After obtaining signed informed consent and baseline data, 5 fully scripted telephone intervention sessions were delivered at 2-week intervals by patient educators. Spouses and diagnosed wives were assessed on standardized measures of adjustment at baseline and immediately after the final intervention session. Results Within-group analyses revealed that spouses and wives in HUSH significantly improved on depressed mood and anxiety; spouses improved on self-efficacy and their skills in supporting their wife. Additionally, wives’ appraisal of spousal support significantly improved. Between-group analyses revealed that outcomes from HUSH were comparable or larger in magnitude to outcomes achieved by the in-person delivered program. Conclusions A manualized telephone-delivered intervention given directly to spouse caregivers can potentially improve adjustment in both spouses and diagnosed wives but study outcomes must be interpreted with caution. Given the small samples in the pilot studies and the absence of randomization, further testing is needed with a more rigorous experimental design with a larger study sample.

Background: Parents with advanced cancer struggle initiating conversations with their children about the cancer. When parents do not have the tools to talk with their children, they silently watch their children attempt to navigate their illness but can only wonder but not know what their children are thinking. The objective of the current study is to describe, from parents living with advanced cancer, the worries and concerns parents wonder their child holds, but has not spoken, about the parent’s cancer. Methods: Twenty-seven parents with incurable cancer enrolled in a 5 session telephone intervention pilot study during which they were asked, “What questions do you have about what your child is thinking or feeling about the cancer?” Data were transcribed and inductively coded using content analysis methods adapted from grounded theory. Results: Analysis yielded 14 categories of parent concerns organized into 6 larger conceptual domains: Being Concerned and Scared about My Cancer; Worrying about Me; Changing How We Talk and Live Day-to-Day; Not Knowing What Will Happen; Having Unanswered Questions about My Cancer; and Understanding My Disease Is Terminal. Conclusions: Study results add to our understanding of the magnitude of the emotional burden parents with advanced cancer carry as they struggle to balance their diagnosis and treatment and their life as parents.

OBJECTIVE: The purpose of this study was to examine the feasibility and short-term impact of a 5-session fully manualized, group-delivered cancer parenting education program to diagnosed parents or surrogate parents with a school-age child. DESIGN: Single group, pre-post-test design with intent to treat analysis. SAMPLE: A total of 16 parents completed the program who were diagnosed within 12 months with non-metastatic cancer of any type (Stages 0-III), read and wrote English, had a child 5–17 years old who knew the parent’s diagnosis. METHODS: Assessments occurred at baseline and at 2 months post-baseline on standardized measures of parental depressed mood, anxiety, parenting self-efficacy, parenting quality, parenting skills and child behavioral-emotional adjustment. FINDINGS/RESULTS: The program was feasible and well accepted: 16/18 (89%) of the enrolled participants were included in the intent to treat analysis. Program staff were consistently positive and enthusiastic about the demonstrated skills they observed in group attendees during the group-delivered sessions, including the emergence of support between attendees. Outcomes on all measures improved between baseline and post-intervention; changes were statistically significant on measures of parents’ anxiety, parents’ self-efficacy, parents’ skills, and parenting quality. CONCLUSIONS: The Enhancing Connections-Group delivered cancer parenting program has potential to improve behavioral-emotional outcomes on standardized measures of skills and emotional adjustment in parents, parent-surrogates and children. Future testing is warranted. IMPLICATIONS FOR PSYCHOSOCIAL PROVIDERS: After a brief training, a fully manualized cancer parenting program can enhance parenting competencies and parent-reported child outcomes.

Objective The objective of this study was to test the short-term efficacy of a brief, fully manualized marital communication and interpersonal support intervention for couples facing recently diagnosed breast cancer. Methods A total of 322 women diagnosed within 6 months with stages 0 to III breast cancer and their 322 spouse caregivers were enrolled. Spouses in the experimental group received five 30- to 60-minute intervention sessions at 2-week intervals by master's-prepared patient educators; controls received the booklet, "What's Happening to the Woman I Love?" Outcomes were assessed at 3, 6, and 9 months using the linear mixed models within an intent-to-treat analysis. Results Compared with controls, at 3 months, spouse caregivers significantly improved on standardized measures of depressed mood, anxiety, cancer-related marital communication, interpersonal support, and self-care. All differences except depressed mood and anxiety were sustained at 9 months. Wives significantly improved at 3 months on marital communication and positive appraisal of spouses' interpersonal support; gains remained significant at 9 months. Compared with controls on chemotherapy, wives in the experimental group additionally improved on depressed mood and tended to improve on anxiety. Conclusions A brief, fully manualized intervention delivered directly to spouse caregivers early in the course of their wives' medical treatment improves caregivers' self-care and behavioral-emotional adjustment and wives' positive view of their spouses' support and communication. The brevity and manualized structure of the intervention argue strongly for its scalability, use in cost-sensitive settings, and its potential dissemination through e-health channels.

The purpose of this study is to examine the feasibility and short-term impact of a fully manualized, telephone-delivered intervention for spouse caregivers, Taking Care of Her (TCH). A total of 12 study participants from the Pacific NW were enrolled whose wife was diagnosed with Stage III ovarian cancer within 8 months. Feasibility was confirmed by rates of recruitment and retention; the quality of delivery of the intervention by telephone; and through data obtained on program acceptability during follow up exit interviews. Outcomes from the within-group analysis revealed improvements on standardized measures of spouses’ and patients’ depressed mood and anxiety; marital communication about the cancer; caregivers’ skills and confidence to manage the emotional toll of the illness on themselves and wives; and wives’ positive appraisal of spousal support. Study results suggest that the TCH Program has the potential to positively affect both spouse caregiver and patients’ adjustment to recently diagnosed advanced ovarian cancer. Telephone delivery holds promise for sustainability. A future clinical trial with a larger study sample is warranted.

One-on-one peer coaching/support programs hold promise in promoting healthy outcomes among women at risk for and surviving with breast cancer, with the potential to bridge gaps in “whole person care.” Although popularly cited for their benefits, emerging evidence is mixed and suggests that peer support program impacts may be attenuated by individual- and community-specific factors. We evaluated a national not-for-profit breast cancer organization’s peer support program outcomes (2015–2018) serving women from predominantly Jewish backgrounds to examine program engagement, facilitation, and satisfaction. Of the N = 392 women sampled, 37% utilized the peer support program: the majority were referred by a family member/friend (40%) or had connected with the program online (34%). Logistic regression modeling revealed that mothers (odds ratio [OR] = 1.82; 95% confidence interval [CI] = 1.04 to 3.19), women at increased genetic risk for breast cancer (OR = 2.07; 95% CI = 1.08 to 3.94), and those who connected with the organization through a family member/friend (OR = 1.97; 95% CI = 1.23 to 3.15) were significantly more likely to utilize peer support (all p’s < .05). Satisfaction with peer support was high and reliably measured (M = 42.8 out of possible 50; α = .95). These findings emphasize opportunities for peer support programs to serve a range of needs among breast cancer previvors and survivors and increase health care’s organizational capacity to reach and impact this community through trusted and well-trained lay coaches.

Background Maternal breast cancer has a significant impact on the well-being of school-aged children, but we know very little about the concerns these children attribute to their mother's illness. Objective The aim of this study was to describe child-reported illness-related concerns experienced in the initial 6 months of their mother's diagnosis and to identify any differences by age and gender of the child. Methods Data were obtained from 140 school-aged children (7-12 years) within 6 months of their mother diagnosis with stage 0 to III breast cancer. Children's written responses to an open-ended question were analyzed: "Think about a situation that has bothered you during the last month that had to do with your mom's breast cancer." Inductive content analysis was used to analyze the data using methods adapted from grounded theory. Trustworthiness of results was protected by coding to consensus, formal peer debriefing, and maintaining an audit trail. Results "Losing Her", the core construct, was identified and organized the children's concerns in 4 domains: (1) her being away from me, (2) worrying about her, (3) seeing my mother be different, and (4) changing how things work. Conclusion All children reported illness-related concerns about which they were bothered. Even seemingly short-term treatment-related absences from the child were interpreted as difficult. Implication for practice Findings from the current study add to nurses' awareness and knowledge about the concerns of school-aged children during their mother's initial treatment of breast cancer. Nurses are in a key position to provide services directly to the child or through the mother.

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.

PURPOSE: United States Hispanics are more likely to be diagnosed with advanced cancer as parents than their non-Hispanic white counterparts but little is known about Hispanic parents’ willingness to discuss a terminal cancer diagnosis with dependent children, potentially resulting in suboptimal child coping. Therefore, we investigated Hispanic mothers’ willingness to communicate with dependent children about her actual or hypothetical advanced cancer diagnosis. METHODS: Two focus groups (n = 6 participants) and three, one-on-one interviews (n=3), were conducted among adult, Mexican-American mothers with a current cancer diagnosis of any stage residing in U.S.-Mexico border communities. Participants reported their perceived concerns, parenting challenges and openness to discussing an incurable cancer diagnosis with a dependent child. Audio files were transcribed into English and qualitatively coded using content analysis. RESULTS: Participants, most with breast cancer, ranged in age from 25–47. Five had considered the possibility of their own death from advanced cancer and three had previously discussed this with their children. While many expected their children would carry on well without them, seven expressed concern for the emotional/spiritual well-being of their children. Mothers anticipated physical and time-based parenting challenges but wanted the opportunity to focus on themselves and their children in advance of death. All but one would be willing to discuss an advance cancer diagnosis with dependent children; four expressed the value of doing so or the potential harm of abdicating this responsibility. CONCLUSIONS: If faced with an advanced cancer diagnosis, Mexican-American mothers are open to communicating with dependent children.

The purposes of the study were to (1) test the short-term impact of a telephone-delivered cancer parenting education program, the Enhancing Connections-Telephone (EC-T) Program, on maternal anxiety, depressed mood, parenting competencies, and child behavioral-emotional adjustment and (2) compare those outcomes with outcomes achieved from an in-person delivery of the same program (EC). Thirty-two mothers comprised the sample for the within-group design and 77 mothers for the between-group design. Mothers were eligible if they had one or more dependent children and were recently diagnosed with stages 0–III breast cancer. Mothers in both groups received five intervention sessions at 2-week intervals from a patient educator using a fully scripted intervention manual. Outcomes from the within-group analysis revealed significant improvements on maternal anxiety, parenting competencies, and the child’s behavioral-emotional functioning. Outcomes from the between-group analysis showed the EC-T did as well or better than EC in positively affecting maternal anxiety, depressed mood, parenting competencies, and the child’s behavioral-emotional adjustment. Furthermore, the EC-T had a significantly greater impact than the EC on maternal confidence in helping their family and themselves manage the cancer’s impact and in staying calm during emotionally charged conversations about the breast cancer with their child. Regardless of the channel of delivery, the Enhancing Connections Program has the potential to positively affect parenting competencies and behavioral-emotional adjustment in mothers and dependent children in the first year of stages 0–III maternal breast cancer. Its positive impact from telephone delivery holds promise for sustainability.

Purpose: The purpose of this study was to use interview data to examine the validity of a recently published theoretical model of HIV transmission between husband and virginal wives in rural Cambodia. Design: This study used a qualitative description method with a sample of women diagnosed with HIV/AIDS in Phnom Penh Cambodia. Methods: Data were collected through in-depth interviews conducted with 15 women who self-identified as having contracted HIV from their HIV-positive husbands. Interviews were conducted in Khmer translated and back-translated for accuracy and then coded using deductive content analysis. Trustworthiness of study results was protected through peer debriefing coding to consensus and maintaining an audit trail. Findings: Each conceptual domain of the prior published theoretical model of HIV transmission was validated and further elaborated by current study data: wives acceptance of their husbands involvement with commercial sex workers the common practice of unprotected sex between HIV-infected spouses and uninfected wives and wives beliefs about the value of the ideal Khmer woman. In addition the current study findings identified a new domain that substantially distinguished between the beliefs and attitudes held about marriage and sex by wives and spouses. Conclusions: Women were not passive recipients of HIV transmission; they reciprocated with behaviors that were consistent with being a good Khmer woman in rural Cambodia all of which increased their vulnerability to HIV transmission from their HIV-infected spouses. Future interventions or programs should consider all these factors and not overly rely on simplistic educational messages about wearing barriers for HIV transmission during sex. Clinical Relevance: The refined theoretical model of HIV transmission from this qualitative research can be used to formulate culturally sensitive and embedded programs for curbing intramarital HIV transmission in Cambodia among the rural poor.

Background Oncology nurses can assist patients in gaining skills and confidence in multiple areas of illness self-management, including parenting skills. Child-rearing parents with cancer are a unique population because they must self-manage their illness and also help their child manage the intrusion of cancer on everyday life. The telephone offers an inexpensive channel for nurses to assist mothers in developing competencies to parent their child. The acceptability and attributed gains from such telephone services are unknown. Objective The aims of this study were to (1) describe the gains child-rearing mothers attribute to participation in a nurse-delivered telephone cancer parenting program and (2) assess mothers' evaluation of the telephone as a channel for delivering the program. Methods Study participants were child-rearing mothers diagnosed with cancer (N = 31) who had completed a manualized telephone-delivered cancer parenting program by a nurse. Mothers were interviewed 1 month after exiting the program by a specially trained interviewer masked on the content of the program. Results Most mothers were white (74%), highly educated, and had breast cancer (93.5%). Mothers attributed gains from the program in 3 areas: (1) being fully present for my child, (2) communicating in new ways, and (3) putting away my assumptions. Conclusions Communication skills learned from nurses can assist mothers to self-manage the impact of the cancer on their own well-being and add to their parenting skills and competencies to help their children. Implications for practice The telephone is an effective and indeed preferred channel for delivering services to child-rearing parents impacted by cancer.

Background: Distress in husbands of women with early-stage breast cancer may be equivalent to or even higher than their wives. Husbands often struggle to help and support their wives cope with the illness and its treatment. In response, we developed a five-session group educational counselling intervention (Helping Her Heal-Group (HHH-G)) for husbands of women with early-stage breast cancer. The primary aim of the current pilot study was to determine the acceptability and feasibility of HHH-G and to obtain a preliminary estimate of its impact on participating men’s skills, self-confidence and self care. Secondary aims were to assess the impact of the intervention on both the participating spouses’ and wives’ ratings of marital quality and depressed mood. Methods: The study employed a one-arm, pre–post-intervention design whereby participating men (n=54) and their wives (n=54) independently completed measures at baseline (T0), immediately following the last session (T1) and 3 months after the last session (T2). Results: Overall, there was very high study retention (87%). On the basis of the questionnaire data, we found significant improvements in spouses’ self-efficacy (p

Purpose Depressed mood in spouses of women with breast cancer deleteriously affects their own and their wife's functioning and their marital communication. However, no study has examined why some spouses get depressed whereas others do not, particularly during the first months of diagnosis and treatment, a known difficult time for couples. The current study has two purposes: to test a predictive model of spouses’ depressed mood and to evaluate the model's accuracy in distinguishing between normal and clinically depressed spouses. Methods Data were obtained from standardized questionnaires completed by 206 spouses and 206 wives recently diagnosed with nonmetastatic breast cancer. Spouses’ depressed mood was measured by the Center for Epidemiological Studies–Depression Scale. A total of 19 variables were extracted from the literature for testing in the model, including psychological, social, demographic, and disease- and treatment-related variables. Results Spouses were more likely to be depressed if they were older, less well educated, more recently married, reported heightened fears over their wife's well-being, worried about their job performance, were more uncertain about their future, or were in less well-adjusted marriages. The model correctly classified 89.2% of spouses’ mood (χ2 = 79.1; P < .001). Conclusion Spouses of women with local or regional breast cancer need to be screened for depressed mood and triaged into supportive services to better assist them manage the threat of their wife's breast cancer.

PURPOSE/OBJECTIVES To describe a process for, response rates of, and indicated interest in recruiting patients with breast cancer and their spouses and family members from a clinical setting into behavioral and psychiatric research studies since the Health Insurance Portability and Accountability Act (HIPAA) regulations have taken effect. DATA SOURCES Published articles, books and book chapters, MEDLINE, government agency information and HIPAA regulatory Web sites, and survey data. DATA SYNTHESIS Response rates among the three target groups--patients, spouses and partners, and female first-degree relatives--were 77%, 95%, and 88%, respectively. Interest was high in the three target groups, with 77%, 87%, and 65% of responding patients, spouses and partners, and female first-degree relatives, respectively. CONCLUSIONS Taken together, these data indicate that high participation rates can be expected from patients with breast cancer and their families in clinical settings. IMPLICATIONS FOR NURSING Regulations pose barriers to patient and family recruitment, but thoughtful systems actually can improve rates of recruitment.

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.

With an aging global population, the number of dementia cases is growing exponentially. To address the upcoming dementia crisis, the World Health Organization and Alzheimer’s Disease International (2012) collaborated on an extensive report, Dementia: A Public Health Priority. In the United Kingdom, Prime Minster David Cameron initiated a national challenge on dementia, forming 3 dementia challenge champion groups aimed at improving health and care, creating dementia-friendly communities, and promoting dementia research. In the U.S., President Obama signed the National Alzheimer’s Project Act, which led to the formation of the Advisory Council on Alzheimer’s Research, Care, and Services and the launch of the first National Plan to Address Alzheimer’s Disease. The term “dementia capable” was introduced in the 2012 Recommendations of the Public Members of the Advisory Council and has since been adopted in both the recommendations and annual updates of the national plan. This paper will first compare and contrast government usage of the concepts dementia friendly and dementia capable, along with another valuable concept, dementia positive, that was added after reviewing the literature. Finally, a new vision statement for the U.S.’ national plan will be proposed and recommendations incorporating these 3 concepts in policy, research, and practice will be made.

Background: The purpose of this study was to determine the long-term benefits of participating in a structured, 8-week educational telephone intervention delivered by expert cardiovascular nurses post-ICD. The intervention was aimed to (1) increase physical functioning, (2) increase psychological adjustment, (3) improve self-efficacy in managing the challenges of ICD recovery, and (4) lower levels of health care utilization over usual care in the first 12 months post-ICD. This article reports on the 6- and 12-month outcomes of the nursing intervention trial. Methods and Results: A two-group (N = 168) randomized control group design was used to evaluate intervention efficacy with persons receiving an ICD for the secondary prevention of sudden cardiac arrest. Measures were obtained at baseline, 6 and 12 months post hospitalization. Outcomes included (1) physical functioning (Patient Concerns Assessment [PCA], Short Form Health Survey [SF-12], ICD shocks), (2) psychological adjustment (State-Trait Anxiety Inventory [STAI], Centers for Epidemiologic Studies–Depression [CES-D], fear of dying), (3) self-efficacy (Sudden Cardiac Arrest–Self-Efficacy [SCA-SE], Sudden Cardiac Arrest–Behavior [SCA-B], Sudden Cardiac Arrest–Knowledge [SCA-K]), and (4) health care utilization (emergency room [ER] visits, outpatient visits, hospitalizations). Using repeated measures ANOVA, the 6- and 12-month benefits of the intervention over usual care were in reductions in physical concerns (P = 0.006), anxiety (P = 0.04), and fear of dying (P = 0.01), with enhanced self-confidence (P = 0.04) and knowledge (P = 0.001) to manage ICD recovery. There were no statistically significant differences between the groups on total outpatient visits, hospitalizations, or ER visits over 12 months. Conclusion: A structured 8-week post-hospital telephone nursing intervention after an ICD had sustained 12-month improvements on patient concerns, anxiety, fear of dying, self-efficacy, and knowledge. Results may not apply to individuals with congestive heart failure who receive an ICD for primary prevention of sudden cardiac arrest.

Partners of breast cancer patients do not have resources available for dealing with their concerns. An analysis of intervention studies with partners was conducted, spanning research published from 1966 to 2004. Although there is considerable descriptive research documenting the need for partner interventions in the context of breast cancer, only 4 studies met criteria for inclusion in this analysis. Two studies reported limited intervention efficacy, but none incorporated all characteristics of a rigorous clinical trial with adequate power to fully test the intervention. Future intervention research should incorporate randomized, controlled clinical trial designs; have adequate statistical power; clearly report eligibility criteria; delineate theoretically based, fully explicated, and consistently delivered interventions; and use outcome measures that are sensitive to empirically derived partner-adjustment issues.

Implantable Cardioverter Defibrillator. The ICD is a common therapy for treatment of ventricular arrhythmias and prevention of sudden cardiac death. After ICD therapy, 50% of survivors are known to have significantly elevated anxiety, depression, anger, and fear in getting back to normal physical activities. Despite these problems, few interventions to improve adjustment have been rigorously evaluated within a clinical trial format. This article reports the short-term efficacy of a structured weekly educational telephone intervention (8 weeks) delivered by expert cardiovascular nurses to recipients of an ICD. To test these effects, a two-group (n = 84/group) randomized clinical trial design was used with measures at baseline (hospital discharge), 1 month, and 3 months after ICD therapy. The study sample were first time ICD recipients for secondary prevention of sudden cardiac arrest. Primary outcomes included (1) physical functioning (Patient Concerns Assessment [PCA], Short-Form Health Survey [SF-12], ICD shocks), (2) psychological adjustment (State-Trait Anxiety Inventory [STAI]), Centers for Epidemiologic Studies-Depression (CES-D), (3) knowledge (Sudden Cardiac Arrest [SCA] knowledge assessment), and (4) health care use (emergency room visits, outpatient visits, hospitalizations). The intervention group, as compared to the control group, significantly reduced mean PCA symptoms at 1 month (11.3-8.8 vs 9.7-9.3, respectively, P < 0.02), and reduced state anxiety (36.1-31.9 vs 33.1-33.0, respectively, P < 0.08), and enhanced knowledge (21.8-22.4 vs 21.4-21.7, respectively, P < 0.02) at 3 months. The intervention did not significantly impact short-term health care use. A structured telephone intervention delivered during the first 8 weeks after ICD therapy by expert cardiovascular nurses decreased ICD related physical symptoms and anxiety, and increased SCA knowledge over 3 months.

Objective: The present study reports on the important issue of how family communication and support regarding breast cancer risk affects interest in genetic testing and mental health. Methods: Participants (n = 221) were women aged 18–74 who had at least one relative of Ashkenazi Jewish descent, no personal history of breast or ovarian cancer, and lived within 60 miles of Seattle, Wash. Results: Communication about breast cancer risk was reported with very low frequency across all types of relatives. Women talked with their mothers and sisters more often than their fathers, brothers, or children. The only significant predictor of interest in genetic testing was the individual level variable of seeking social support. Conclusion: Social support needs might be a part of the genetic testing process.

Purpose/objectives To analyze five common assumptions about a family's adjustment to breast cancer and to suggest needed future directions for family-focused research. Data sources Published research in nursing, psychiatry, behavioral medicine, and psycho-oncology about families' functioning with breast cancer. Data synthesis Evidence from published research is that family members do not modify their coping behavior in response to illness-related pressures, do not appear to learn over time how to manage illness-related concerns, are not responsive to each other's thoughts and feelings about cancer, experience tension in the marriage from cancer, and neither understand nor assist children affected by a mother's breast cancer. Conclusions Current assumptions about how families function with breast cancer need to be replaced with a more informed, data-based view that guides the development of better programs and services for assisting families. Implications for nursing Future research and interventions need to address the impact of breast cancer on the primary relationships in a household, the impact of the illness on the family's core functions, and the family members' competencies to manage the illness.

This study investigated the effects of parental functioning on adolescent adjustment during the acute phase of treatment for mothers diagnosed with breast cancer. Data from self-and parent-report questionnaires were obtained in the homes of 87 adolescents and 174 parents within six months of the mother's diagnosis. Associations between adolescent adjustment (self-esteem, behavioral problems, anxiety) and parental functioning (depressed mood, parenting quality, and marital adjustment) were examined when neither, one, or both parents were functioning at compromised levels. When both parents had depressed mood, adolescents tended to show increased behavioral problems; maternal depressed mood was the main source of influence. When the quality of the parenting relationship between the adolescent and both parents was poor, adolescents showed significantly lowered self-esteem and increased anxiety. Marital adjustment did not affect adolescent functioning significantly. Maternal depressed mood and the qu...

This article discusses the theoretical development of a nursing intervention program to enhance recovery over the first year following sudden cardiac arrest. Concepts from social cognitive theory and domains of concern following sudden cardiac arrest underpin a tailored and standardized nursing intervention. The nursing intervention program is designed for delivery by means of telephone and through the mail. Testing of the nursing intervention program is underway using a clinical trial design.

Semislructured interviews were conducted with 26 mothers who had one or more children(N = 36) aged 8 to 12 years when they were diagnosed with early stage breast cancer. Formal methods were used to analyze the content of the data inductively. Mothers identified times during their diagnosis and treatment that were most difficult for their children, behaviors they observed indicating that the child was having a difficult time, and factors that prevented them from helping the child during those difficult times. The data provide a partial basis for developing materials, programs, and services designed to minimize the children's distress and to enhance the effectiveness of' parenting when a mother has early stage breast cancer.

The purpose of this article is to recommend future directions for behavioral research to enhance adjustment and quality of life for adults diagnosed with cancer. As context for the recommendations, the domain of behavioral research in psychosocial oncology is briefly described, the state of the science measuring quality of life is summarized, and research results from behavioral research on quality of life are reviewed.

The purpose of this study was to examine the relationship between (1) expressed emotion (EE) and characteristics of Taiwanese dementia patients and their family caregivers and (2) EE and depressed mood, burden, and perception of health in Taiwanese caregivers of elderly persons with dementia.Sixty-five primary caregivers of elderly persons with mild to severe dementia were recruited from institutions in Taiwan and they completed four standardized questionnaires: Level of Expressed Emotion (LEE) scale, Center for Epidemiologic Studies Depression (CES-D) scale, Zarit Burden Inventory (ZBI), and General Health Perceptions subscale of the Medical Outcomes Study Short Form 36 Health Survey (MOS SF-36).EE was positively associated with caregiver depression (r = .543; p.001) and burden (r = .532; p.001), and negatively associated with caregivers' perceived health (r = -.316; p = .010). The higher the caregivers' depression and burden, the greater was their EE and the lower the caregivers' perceived health, the higher was their EE. EE was negatively associated with caregiver education (r = -.279; p = .024) and income (r = -.261; p = .036). The lower the caregivers' education and income, the higher was their EE.The significant relationship between EE and caregivers' mood and perceived burden suggests that caregivers with elevated mood or burden may put persons with dementia at greater risk for toxic, negative interactions from them. Although this study's design precludes attributing directionality, more depressed caregivers are at a greater risk of higher EE which may affect care of their elderly demented family members. Additional research is warranted with a larger sample size and/or a longitudinal design.

Purpose/objectives To provide preliminary data on a diffusion of psychosocial benefit to women diagnosed with breast cancer when only their partners receive a psychoeducational intervention focused on the breast cancer experience. Design Single-group, pretest/post-test pilot study; participants served as their own controls. Setting Communities in the Pacific Northwest region of the United States. Sample 9 women with a first diagnosis of breast cancer within the previous six months whose partners received the Helping Her Heal intervention. Methods Data were collected from women pre- and postintervention via standardized questionnaires with established reliability and validity. Confidential exit interviews were conducted after postintervention data were returned. Main research variables State anxiety (State-Trait Anxiety Inventory Form Y [STAI-Y]), depression (Center for Epidemiologic Studies-Depression scale [CES-D]), and marital quality (Dyadic Adjustment Scale [DAS]; Mutuality and Interpersonal Sensitivity scale). Findings Wilcoxon signed-rank tests showed significant improvements on the CES-D (p = 0.01), STAI-Y (p = 0.01), and DAS affectional expression subscale (p = 0.03) in women from pre- to postintervention. Review of exit interview transcripts indicated that women generally were positive about the impact of the program and viewed their partners' gains in communication skills as the greatest benefit of participating. Conclusions This study offers preliminary support for a diffusion of psychosocial benefit to women with breast cancer when a psychoeducational intervention is delivered to their partners. Implications for nursing Diffusion of benefit should be examined in a large, randomized, clinical trial to provide evidence for focusing some clinical efforts on partners alone, rather than adding to diagnosed women's burden of multiple clinical encounters.

This study examines the experiences of 48 spouses of wives newly diagnosed with local or regional breast cancer. Their reported experiences were organized into the core construct of Coming to Grips reflected by four domains: (1) Feeling nailed by the breast cancer; (2) Changing us; (3) Taking care of me; and (4) Making things work. Prior studies have underestimated the extent to which the assumptive world and day-to-day lives of spouses are shattered by the diagnosis of breast cancer and the work they do to guess how to be supportive to their wives. Interventions are needed which directly assist spouses add to their ways of managing the intrusion of their wife’s breast cancer in their lives.

Objective—To describe spouses' reported cancer-related demands attributed to their wife's breast cancer and to test the construct and predictive validity of a brief standardized measure of these demands. Methods—Cross-sectional and longitudinal data were obtained from 151 spouses of women newly diagnosed with non-metastatic breast cancer. Descriptive statistics were computed to describe spouses' dominant cancer-related demands and multivariate regression analyses tested the construct and predictive validity of the standardized measure. Results—Five categories of spouses' cancer-related demands were identified, such as concerns about: spouses' own functioning; wife's well being and response to treatment; couples' sexual activities; the family's and children's well-being; and the spouses' role in supporting their wives. A 33-item short version of the standardized measure of cancer demands demonstrated construct and predictive validity that was comparable to a 123-item version of the same questionnaire. Greater numbers of illness demands occurred when spouses were more depressed and had less confidence in their ability to manage the impact of the cancer (F=18.08 (3, 103), p

The family, not merely the diagnosed individual, experiences the demands and contingencies of cancer. There is substantial cumulative evidence that these illness-related demands occur during the early stages of illness diagnoses and treatment as well as during the ongoing illness experience. Pressures seem to exacerbate during disease recurrence. The partner, as well as the school age children, are affected by the illness experience. For the partner there is the problem of depression and marital tension. Such factors, in turn, affect the partner's relationship with the children and the child's subsequent psychosocial adjustment. Support programs for the family, as well as the patient, are clearly indicated. Many types of supportive services seem indicated: informational, interpretive, anticipatory, physical, skill building, and problem-focused services.

Study objectives: Although clinicians and scientists have a growing awareness of breast cancer as a couple's joint experience, no one has studied the concerns couples choose to address with a professional coach to better manage the impact of the cancer. The purpose of the current study was to describe illness-related concerns couples worked on together with masters-educated professional coaches during the first eleven months of the wife's treatment for early stage breast cancer. Setting and participants: Intervention sessions were conducted with twenty-nine couples in their homes in the Pacific Northwest. Design: Data were obtained from single occasion case intensive interviews with couples. Main results: Inductive coding of the audiorecorded intervention sessions yielded four domains of core concerns: dealing with tension in the relationship; needing to be together as a couple; wondering about the children; and managing the threat of breast cancer. Conclusion: Over half the couples chose to address and do something about the stress, tension and dissatisfaction they were feeling in their relationship that each attributed to the breast cancer. Future family-focused cancer care needs to include services that assist couples to address these core concerns. Copyright © 2006 John Wiley & Sons, Ltd.

In 2005, approximately 211,240 women in the US will be diagnosed with early stage breast cancer and an estimated 22% will be child rearing. Research reveals that both mothers and children have elevated distress attributed to the cancer; struggle with how to talk about and deal with the impact of the cancer; and both fear the mother will die. The Enhancing Connections Program (EC) was developed to reduce this cancer-related distress and morbidity. The program involves five, 1-hour educational counseling sessions delivered at 2-week intervals by specially trained clinicians. This study reports on the program's short-term impact on mothers' and children's adjustment. Thirteen households were recruited within 7.5 months of the mother's diagnosis with early stage breast cancer. Impact was evaluated within a single group design using data obtained from standardized questionnaires with established reliability and validity. Results revealed significant improvements in the mother's depressed mood, anxiety, and self-confidence to assist her child (mother report). There were also significant decreases in the child's behavioral problems (mother and father report); the child's cancer-related worries (child report); and the child's anxiety/depressed mood (mother and father report). Further evaluation is warranted within a clinical trial.

Purpose/objectives To evaluate the strength and integrity of a pilot behavioral intervention designed to assist mothers with breast cancer and their children. Research approach A single-group analysis of the strength and integrity characteristics of an intervention developed for a pilot research study. Setting Homes of study participants in an urban area. Participants Seven households with a mother and father and one household with a single mother. Methodologic approach Observer-reported checklists, audiorecorded intervention session data, and structured interview data obtained from study participants. Main research variables Strength of the intervention included dimensions such as the theoretical foundation, competence of the interventionist, and specificity to the breast cancer experience in the family. Intervention integrity consisted of adherence by the interventionist and participants to the intervention plan. Findings The strength of the intervention was determined to be an asset. Careful planning had included a framework, a defined set of scripted sessions, a competent interventionist, and content specific to the breast cancer experience. In regard to integrity, the protocol content was delivered as scripted. Improvements in the dosage and purity dimensions were found to be needed. Homework assignments and in-session skill-building approaches with the mothers were refined. Conclusions An intervention can be examined carefully for strength and integrity with established criteria to determine improvements needed. Interpretation A clinical research protocol can be improved through an assessment of an intervention's strength and integrity.

The family, not just the patient, experiences and attempts to understand the meaning of cancer. The family's adjustment to cancer involves moving through psychosocial transitions in ways that facilitate the meaning of the experience; that maintain the family's ongoing functions; that respond to the illness-related demands; that maintain the self-esteem of the family members; and that foster new arrangements and relationships in the family that are responsive to the contingencies of the illness.

The Family Home Visitation Program: Nurse as Coach was a 3-year, National Cancer Institute-funded, multisite, randomized trial of a nursing intervention. It tested the effectiveness of an in-home coaching intervention designed to enhance long-term adjustment of breast cancer's effect on familyfunctioning. We summarize our recruitment and retention experiences, review accrual and retention issues identified from our experiences and those of other researchers, and suggest 24 specific strategies to maximize sample size in future clinical trial studies. Our target sample consisted of 200 women with early stage breast cancer and their male partners and children. We obtained 313 eligible referrals from 91 sites: 217 participants (69.3%) were accrued, 96families (30.7%) refused, 181 participants (83.4%) were retained, 11 (5.1%) were dropped because of changes in eligibility status or because of scheduling error, and another 25 (11.5%) elected to withdraw.

Families that successfully adapt to new situations have been found not only to appraise the situations as manageable but also to possess the necessary resources to meet the challenges. The purpose of this study was to determine the goals that families in which the mother had chronic illness identified for themselves and how these goals related to family functioning. A five-occasion, 15-month, descriptive longitudinal design was used to collect data. Data from occasions 2 and 3 were used to generate the coding scheme. This coding scheme was used to analyze the fourth-occasion data set, which is presented here. The sample at the fourth occasion consisted of 103 families in which the mother was diagnosed with breast cancer, diabetes, or fibrocystic breast disease. Content analysis of responses revealed 10 mutually exclusive categories of family goals: viability of children, cohesion, adaptation, boundary alterations, health maintenance, conflict management, individual achievements and pursuits, acquisition of possessions, financial stability, and family relocation. Types of goals identified did not significantly differ by disease type. The results suggest that family-system goals are relatively enduring and not readily discarded in response to health or illness disruption.

Despite the high rates of breast cancer in the child-rearing mother, there is extremely limited research on the effects of the illness on the children, marriage, and parent-child relationship. The current study tested an explanatory model of family functioning with breast cancer based on data obtained from standardized questionnaires from 80 diagnosed mothers and partners with young school-age children. Path analysis results for data obtained from both the mothers and the partners revealed a similar pattern. More frequently experienced illness demands were associated with higher levels of parental depressed mood which negatively affected the marriage. When the marriage was less well adjusted, it negatively affected the family's coping behavior. Household functioning was positively affected by heightened coping activity and by higher levels of marital adjustment. Children functioned better when the non-ill parent more frequently interacted with them and their families coped more frequently with their problems.

THE FATHER'S, MOTHER'S, AND ADOLESCENT'S FUNCTIONING WITH BREAST CANCER* Frances Marcus Lewis and Mary A. Hammond" The current study used path analysis to examine the impact of early stage breast cancer on the functioning of families with adolescents. Results revealed that the illness-related demands that the mothers and fathers saw impinging on their family predicted higher levels of maternal depressive mood, poorer marital adjustment, and lower parenting quality. When parenting quality was lower, the adolescent scored lower on self-esteem. Family professionals can help couples gain cognitive behavioral control over their perceived illness-related demands, help husbands avoid transferring illness-related tension onto their appraisal of the marriage, and help adolescents appropriately interpret parenting behavior. Chronic medical illness in a parent has been studied primarily from the perspective of the diagnosed patient, not from the perspective of other household members (Hilton, 1989; Lewis, 1986, 1990; Lindsey, Norbeck, Carrieri, & Perry, 1981; Maguire et al., 1978; Peters-Golden, 1982; Wellisch, Fawzy, Landsverk, Pasnau, & Wolcott, 1983). Research on breast cancer has reflected this same pattern. Even when the window of observation into the family's experience with breast cancer has been expanded to include the spouse/partner (Carter, Carter, & Siliunas, 1993; Gotay, 1984; Lewis & Deal, 1995; Northouse, 1988; Northouse & Peters-Golden, 1993; Northouse & Swain, 1987; Sabo, Brown, & Smith, 1986; Wellisch, 1981; Wellisch, Jamison, & Pasnau, 1978; Zahlis & Shands, 1991, 1993), there has been extremely limited documentation of the child's or adolescent's adjustment to the illness (Armsden & Lewis, 1994; Lewis, 1996). Given that an estimated 184,300 women will be diagnosed with breast cancer in 1996 and an estimated 15 to 30% of them will have one or more children still living in the home, this represents a substantial number of potentially affected children (Parker, Tong, Bolden, & Wingo, 1996). Few researchers have examined the adolescent's response to cancer in a mother. Early clinical evidence of the impact of breast cancer on the adolescent was reported by Grandstaff (1976), who observed that adolescents, particularly males, had a difficult time adjusting to their mothers' breast cancer. More recent research has been data based (Lichtman et al., 1984; Wellisch, Gritz, Schain, Wang, & Siau, 1991, 1992). Wellisch et al.'s study, however, relied on the adult daughter's retrospective report of her response to her mother's breast cancer and aggregated data across children ages 0 to 20 years at the time of the mother's diagnosis. Lichtman's team studied the mother-daughter and mother-son relationship but relied on the mother's report of changes in the relationship that were consequent to the breast cancer (Lichtman et al., 1984). The study was also limited because, like Wellisch's research, it relied on retrospective reports and data were aggregated across a wide age span of children's ages. Not only has prior research given limited attention to the adolescent's experience with breast cancer in the mother, it has also overrelied on the diagnosed mother as the sole reporter for the family. With only one known exception, the father's report of his family's experience with breast cancer has received no attention (Lewis, Woods, Hough, & Bensely, 1989), but results from that prior study were limited to children ages 6 through 12. The purpose of the current study was to test a theoretical model of the impact of the mother's breast cancer in adolescent-rearing households from the mother's, father's, and adolescent's viewpoints. The theoretical model derives from stress and coping, developmental, and family systems theories (Brody, Stoneman, & Burke, 1987; Buckley, 1967; Hill, 1972; Kobak & Sceery, 1988; Kobak, Sudler, & Gamble, 1991; Lazarus & Folkman, 1984; Schwenk & Hughes, 1983). …

T O DATE, primary emphasis in research on the psychosocial aspects of breast cancer has been on the individual patient's response to the illness and its medical management. 1-3 Early work by clinicians was typified by seminal case studies, 4-7 but no studies systematically documented the impact of cancer on the family. Thus, although there has been a proliferation of authoritative literature on women's psychosocial adjustment to breast cancer, comparatively little attention has focused on the family's immediate and long-term adaptation to the illness. The tradition of examining the impact of cancer or life-threatening illness on the individual continues but fails to include the broader context of family-level impact and coping; 8"9 despite the growing awareness of the importance of the social support network in which the diagnosed member belongs ~°-19 and despite the recognition that it is the family, and not the isolated patient, that experiences the illness~ j'2°-z3 The family is often treated as a bystander rather than an influencing, organizing, and creative agent. Only recently have clinicians turned their attention toward systematic documentation of the family's functional status during an episode of illness. 24-27 This article has three purposes: to review selected concepts that characterize the impact of breast cancer on the family; to highlight selected preliminary research results from a longitudinal study of the impact of breast cancer on the family; and to draw implications for clinical practice for nurses working with women who have breast cancer and their families.

Despite the existence of aggressive symptom-management programs for late-stage adult cancer patients, few researchers have identified the critical targets for psychosocial support in that population. As a result, clinicians often must rely on global theories of support alone to guide their interactions with such patients. The resent study examined the effects of attributed control over one's health and experienced meaning of one's situation on anxiety and self-esteem in 57 adults with advanced cancer. Both attributed control and experienced meaning constitute potential targets for therapeutic interaction. The author hypothesized that (1) external attributions of control and higher levels of experienced meaning protect self-esteem and reduce anxiety and (2) when left unmediated by either externalized control or perceived meaning, the longer the experience with incurable cancer, the higher the level of anxiety and the lower the level of self-esteem. The extent to which the patients attributed meaning to the...

The family, not just the patient, experiences the crisis and impact of cancer. This paper critically reviews the empirical research which examines the effects of cancer on the family. Eleven separate issues are identified and discussed: emotional strain, physical demands, uncertainty, fear of the patient dying, altered roles and lifestyles, finances, ways to comfort the patient, perceived inadequacy of services, existential concerns, sexuality, and non-convergent needs among household members. The paper concludes with the research, clinical, and programmatic implications of these studies.

While previous research has studied the impact of chronic illness on the patient or spouse, the impact on the marriage, the child, the parent-child relationship, and the family's functioning have been relatively ignored. To date ther is no known study of the impact of a mother's chronic illness on the family. The purpose of the current exploratory study was to test a set of interrelated hypotheses about family functioning with the mother's chronic illness from the spouse's perspective based on a family systems perspective. Data were obtained from standardized questionnaires from 48 fathers with young school-age children whose wife had either breast cancer, diabetes, or fibrocystic breast disease. Results of a path analysis revealed that the number of illness demands the father experienced was a significant predictor of his level of depression. More demands resulted in higher depression scores. Marital adjustment was significantly affected by both the father's level of depression as well as by his wife's type of disease. Spouses of women with breast cancer had significantly higher levels of marital adjustment than did partners of the other women. More depressed spouses had lower levels of marital adjustment. Both illness demands and level of marital adjustment significantly predicted the type of coping behavior the family used. More frequent illness demands and higher levels of marital adjustment were associated with familial introspection, that is, coping behavior characterized by frequent feedback, reflection, and discussion in the family. The quality of the father-child relationship was significantly affected by this type of coping behavior. Families characterized as introspective had fathers who reported more frequent interchange with their children.(ABSTRACT TRUNCATED AT 250 WORDS)

The purpose of the current study was to describe the types of coping strategies household families use to manage problems that affect them when the mother has a chronic illness. Data presented are cross-sectional data from first occasion interviews collected as part of a larger longitudinal study of 125 families (Lewis, Woods, & Ellison, 1983) in which the mother has either breast cancer, fibrocystic breast disease or diabetes. The instrument used to collect data on family coping was the Problem Centered Family Coping Interview (Lewis, 1983). Study families reported a mean number of 4.02 coping strategies per family. Using content analysis, 55 mutually exclusive coping strategies were identified from open-ended interview questions. These 55 categories were combined into 10 composite categories by content area for purposes of statistical analysis. The most frequent composite category reported by the study sample was alterations in household management which represented 38% of the types of strategies employed by these families. The type of chronic illness in the mother did not differentiate the families by categories of management strategies.