Pilot study of an information aid for women with a family history of breast cancer

Objective

To develop and pilot study an information aid for women with a family history of breast cancer.

Design, setting and participants

The information aid, consisting of a booklet and audiotape, was developed by a multi-disciplinary team of health care professionals, breast cancer survivors and their relatives. Women with no personal history of breast cancer, on the waiting list for a familial breast cancer clinic at either of two centres, who could read English, were eligible for the pilot study which consisted of three sets of mailed questionnaires.

Main outcome measures

The baseline questionnaires included: demographic information: the Breast Cancer and Heredity Knowledge Scale (BCHK); psychological measures (the State-Trait Anxiety Inventory [STAI], Centre for Epidemiologic Studies Depression Scale [CES-D] and an item about breast cancer worry), and an item about breast cancer risk perception. Immediately after reviewing the information aid, participants completed a satisfaction survey, the risk perception and cancer worry items and a checklist about their personal family history. The third set of questionnaires, completed 2–4 weeks after reviewing the aid, was identical to the first. Patients then attended their scheduled clinic visit and an objective hereditary breast cancer risk assessment was made by the genetic counselling team.

Results and conclusions

Of 97 eligible women who were contacted, 67 completed all three sets of questionnaires. Overall, women were very satisfied with the aid and 96% would recommend it to other women. There was a highly significant improvement in their knowledge scores after they reviewed the aid. Anxiety and depression did not change and there was a decline in breast cancer worry. Risk perception did not change significantly. Ninety per cent of women completed their personal family history checklist accurately. Several important improvements have been made in the information aid and it will now be evaluated in the community.

     

Real-time moment-to-moment emotional responses to narrative and informational breast cancer videos in African American women

In a randomized experiment using moment-to-moment audience analysis methods, we compared women's emotional responses with a narrative versus informational breast cancer video. Both videos communicated three key messages about breast cancer: (i) understand your breast cancer risk, (ii) talk openly about breast cancer and (iii) get regular mammograms. A community-based convenience sample of African American women (n = 59) used a hand-held audience response device to report the intensity of their emotional reaction while watching one of the two videos. Strong emotions were more likely to correspond to contextual information about characters in the video and less likely to correspond to health content among women who watched the narrative video compared with those who watched the informational video (P < 0.05). Women who watched the narrative video were more likely to report feeling attentive (41 versus 28%, respectively), inspired (54 versus 34%) and proud (30 versus 18%) and less likely to feel upset (8 versus 16%) (all P < 0.05). Women in the narrative group were more likely to mention women's personal stories than health information in open-ended recall questions, but this did not detract from obtaining health information. Findings suggest that stories can be used to communicate health information without distracting from core health content.     

"Throwing the dice": pregnancy decision-making among HIV-positive women in four U.S. cities

CONTEXT: Although AIDS-related deaths among U.S. women have decreased, the number of HIV-positive women, especially of reproductive age, has increased. A better understanding of the interaction between HIV and family planning is needed, especially as antiretroviral medications allow HIV-positive women to live longer, healthier lives. METHODS: Qualitative methods were used to examine pregnancy decision-making among 56 HIV-positive women in four U.S. cities. Biomedical, individual and sociocultural themes were analyzed in groups of women, categorized by their pregnancy experiences and intentions. RESULTS: Regardless of women's pregnancy experiences or intentions, reproductive decision-making themes included the perceived risk of vertical transmission, which was often overestimated; beliefs about vertical transmission risk reduction strategies; desire for motherhood; stigma; religious values; attitudes of partners and health care providers; and the impact of the mother's health and longevity on the child. Most women who did not want children after their diagnosis cited vertical transmission risk as the reason, and most of these women already had children. Those who became pregnant or desired children after their diagnosis seemed more confident in the efficacy of risk reduction strategies and often did not already have children. CONCLUSIONS: Future studies may help clarify the relationship between factors that influence pregnancy decision-making among HIV-positive women. HIV-positive and at-risk women of childbearing age may benefit from counseling interventions sensitive to factors that influence infected women's pregnancy decisions.     

Factors shaping at‐risk individuals’ decisions to undergo genetic testing for cancer in Asia

This study aims to enrich our understanding of factors influencing medically indicated at‐risk individuals’ decisions to take genetic tests (or not) in the context of cancer treatment and prevention. While previous studies have explored this topic in communities in Europe and the United States, we know relatively little about the situation in Asia. In this study, we conducted in‐depth interviews with 24 women who underwent genetic testing for hereditary breast and ovarian cancer syndromes in Singapore. Grounded theory with thematic analysis was applied. Six encouraging and three discouraging factors are identified in the analysis. The six encouraging factors are: desire to create awareness for self and family; perceived benefits for self and family; strong family history of cancer; presence of family support; medical professional recommendation and adequate amount of time to consider undertaking the test. The three discouraging factors are: high costs of tests; perceived lack of ability to cope with test results; and insufficient information about genetic testing. Taken together, the findings in this study add to the current literature by providing empirical evidence regarding the importance of holding family included pre‐test counselling and providing adequate time for patients to decide to undergo genetic testing for hereditary cancer syndromes.     

'She's 16 years old and there's boys calling over to the house': An exploratory study of sexual socialization in Latino families

Compared to other ethnic groups in the USA, Latino populations are at high risk for negative sexual outcomes, including unplanned pregnancy and HIV/AIDS infection. The goal of this study was to explore the role of cultural beliefs and values in sexual socialization by focusing on the family socialization of adolescent romantic and sexual behaviour described by 22 Latina/Hispanic women who took part in in-depth individual interviews. Four broad themes were explored: Parental concerns regarding dating, family communication about sexual issues, family rules about dating, and actual dating and sexual experiences. Consistent with traditional cultural views, female romantic involvement outside of marriage was described as potentially dishonourable to the family. Because US-style dating was seen as a violation of traditional courtship styles, most of the respondents' families placed strict boundaries on adolescent sociosexual interaction. As a result, many respondents described adolescent experiences of dating characterized by tension and conflict, and reported vulnerability in eventual sexual encounters. In order to better understand the sexual behaviour of young Latina women in the USA, researchers must examine sexual socialization within the family of origin and take parents' culturally-influenced beliefs and practises into account.     

Optimising clinical practice in cancer genetics with cultural competence: lessons to be learned from ethnographic research with Chinese-Australians

Hereditary cancer is about families, and clinicians and genetic counsellors need to understand the cultural beliefs of patients and families about cancer and inheritance. In the light of their kinship patterns Chinese-Australians were chosen for the present study, which aims to determine the explanatory models of inheritance, cancer, and inherited cancer, with a view to identifying the relationship between these culture-specific lay attributions and help-seeking behaviour, and to identify possible barriers to genetic counselling and testing. Qualitative ethnographically informed methodology involving semi-structured interview was used as a method to uncover latent beliefs held by the families who are represented by the subjects. In-depth interviews were conducted with 16 informants of Chinese ethnicity, who had been recruited through two major Sydney familial cancer clinics. We report the attributions of cancer in general, then on inheritance, kinship, genes and genetics and then focus on the way in which these beliefs come together around hereditary cancer. The majority of informants, despite high acculturation and belief in biomedical explanations about hereditary cancer, also acknowledged the influence of traditional family Chinese beliefs, where 'inheritance' and 'genetics' were related to retribution for ancestral misdeeds and offending ancestors. Extensive mismatch of attributes and beliefs were identified in those who attended the clinic and senior family members, creating barriers to optimal service utilisation. Three traditional patterns of beliefs were identified: (a) father and mother contributed in equal share to one's genetic makeup, linked to the ying-yang theory; (b) the dominance of life force (yang chi) and the shaping of genes were transmitted through the paternal line; and (c) natural and supernatural forces operated in the cause of hereditary cancer. The study provided guidance for clinical practice. Exploration and acknowledgement of family beliefs, regardless of cultural background and therefore avoiding stereotyping, can enable the clinician to work with the whole family-those who hold Western attributions, those who maintain traditional notions of genetics and inheritance, and those who incorporate both into their belief systems-and provide effective clinical services. Further ethnographic studies are needed, focusing on the Chinese groups who do not attend the clinic and those with lower acculturation and educational levels.     

"He told me it would be extremely selfish of me to even consider [having kids]": The importance of reproductive health to women with spina bifida and the lack of support from their providers

BackgroundAs more women with spina bifida (SB) enter their reproductive years, the number having children is significantly increasing. However, little is known about their understanding of their ability to get pregnant or their experiences in considering, planning, or interacting with providers during a pregnancy.ObjectiveWe sought to determine what women have been told and understand about their reproductive health, their attitudes towards having children, and their experiences interacting with providers when seeking reproductive health care.MethodsIn this exploratory study employing qualitative research methods and following Grounded Theory, interviews with women with SB 16 years or older were transcribed verbatim and analyzed by three coders.ResultsInterviews of 25 women with SB ages 16–52 (median 26) revealed the following themes about their reproductive health perceptions and experiences: 1) poor understanding of reproductive health and potential, 2) interest in having a family, 3) facing provider's opposition to their reproductive goals, 4) going into pregnancy and delivery unprepared, 5) the importance of provider support for reproductive goals. Five women experienced an unintended pregnancy.ConclusionsAlthough having children is important to most women with SB in this study, they report a poor understanding of their reproductive potential with several noting unintended pregnancies. They feel uninformed and unprepared during pregnancy and face discouragement from providers. Those experiencing supportive providers report a more positive experience. This demonstrates the urgent need to educate women with SB about their reproductive health and the providers who care for them how to support and counsel these women.     

Breast cancer beliefs of women participating in a television-promoted mammography screening project.

A survey of breast cancer and breast cancer screening beliefs was mailed to a random sample of 1,000 women who contacted a telephone bank in response to a television-promoted, reduced-cost mammography project. Beliefs and demographics of women in the sample who subsequently completed a mammogram were compared with those who did not. No statistically significant differences were found between participants (persons who completed a mammogram) and nonparticipants with respect to age, race, marital status, income, or educational preparation. Groups also did not differ significantly in the series of beliefs examined. Factor analysis revealed respondents' most salient beliefs about breast cancer and early detection of breast cancer. Evidence is presented to suggest a need for enhanced efforts to recruit minority group women to participate in mammography screening.     

Perceived breast cancer risk: heuristic reasoning and search for a dominance structure

Studies suggest that people construct their risk perceptions by using inferential rules called heuristics. The purpose of this study was to identify heuristics that influence perceived breast cancer risk. We examined 11 interviews from women of diverse ethnic/cultural backgrounds who were recruited from community settings. Narratives in which women elaborated about their own breast cancer risk were analyzed with Argument and Heuristic Reasoning Analysis methodology, which is based on applied logic. The availability, simulation, representativeness, affect, and perceived control heuristics, and search for a dominance structure were commonly used for making risk assessments. Risk assessments were based on experiences with an abnormal breast symptom, experiences with affected family members and friends, beliefs about living a healthy lifestyle, and trust in health providers. Assessment of the potential threat of a breast symptom was facilitated by the search for a dominance structure. Experiences with family members and friends were incorporated into risk assessments through the availability, simulation, representativeness, and affect heuristics. Mistrust in health providers led to an inappropriate dependence on the perceived control heuristic. Identified heuristics appear to create predictable biases and suggest that perceived breast cancer risk is based on common cognitive patterns.     

Why do women not return family history forms when referred to breast cancer genetics services? A mixed‐method study

Background

Personal and family data forms, completed by women referred to breast cancer genetics clinics, are valuable tools for verification and extension of family history, crucial steps in accurate risk evaluation. A significant minority of women do not complete and return these forms, despite reminders, even when completion is a pre‐requisite for a clinic appointment.

Objective

To facilitate access of women at increased familial risk of breast cancer to screening and counselling services by investigating reasons for non‐return of the forms.

Participants and Design

Based on a single regional ‘breast cancer family’ service in the UK, Analysis of quantitative data comparing women who did not return forms (n = 55) with those who had done so (n = 59), together with qualitative evaluation of potential barriers to form‐completion through semi‐structured telephone interviews with a random subset of ‘non‐returners’ (n = 23).

Results

Non‐returners have higher proportions of the very young (below the age at which surveillance could be offered) and of women from lower social deprivation categories. Interviews revealed that the majority of non‐returners are anxious, rather than unconcerned about their breast cancer risk and circumstances and attitudes contributed to non‐compliance. Twenty‐one participants confirmed that they would welcome an appointment at a ‘breast cancer family’ clinic, but nine did not attend for the appointment. They were significantly younger than those who attend, but were not at lower familial risk.

Discussion and Conclusions

Many women who fail to complete and return a family history form would benefit from risk assessment and genetic counselling. Several steps are suggested that might help them access the relevant services.     

Accommodating risk: responses to BRCA1/2 genetic testing of women who have had cancer

The relationship between risk awareness and anxiety has been the subject of extensive theoretical debate and empirical research. Previous studies of women with a family history of hereditary breast and ovarian cancer suggest that both healthy at-risk women and former cancer patients report increased anxiety upon learning about their increased risks of developing these diseases. Indeed, anxiety about genetic risks has been reported as influencing decisions about DNA-testing and risk-reducing surgery on healthy breasts and ovaries. This qualitative study of women who had been treated for breast/ovarian cancer investigated their perceptions of, and reactions to, their genetic risks of developing further cancers following genetic testing (BRCA1/2 mutation searching). In-depth interviews were undertaken with 30 women (10 mutation carriers, 8 awaiting a result and 12 who received an inconclusive test result). Whilst the majority of women in all three groups adopted a fatalistic approach with regard to their future health and did not regard their genetic risks as a threat to self, a few reported heightened anxiety on learning they were at increased risk of developing a second primary cancer. The data suggest that affected women understand their genetic risks of cancer within the context of their previous disease experiences. It is observed that women's responses to their genetic risk are influenced by the degree to which they have accommodated their risk status in their biography following their diagnosis and treatment of cancer.     

Self-reported family history of leiomyoma: not a reliable marker of high risk

PurposeTo examine the importance of self-reported family history of uterine leiomyoma (fibroids) as a marker of risk.MethodsWomen, aged 35 to 49, were randomly selected from the membership of a large, urban health plan. Participants completed a self-administered questionnaire about family history of fibroids. Ultrasound screening for fibroids followed, regardless of whether participants had been previously diagnosed (660 black, 412 white). Data for each ethnic group were analyzed separately using Poisson regression.ResultsIn both ethnic groups, women who reported a family history of fibroids had an elevated risk of fibroids compared with those without family history. However, no elevated risk was apparent for cases who did not know they had fibroids when they reported the family history information.ConclusionsMany women may first learn about their family history of fibroids when discussing their own clinical diagnosis with family members. Such bias would invalidate self-reported family history as a predictor of fibroid risk. As new pharmacologic treatments for fibroids are developed, women at high risk of fibroids would benefit from early screening and pharmacologic treatment to delay development of large fibroids and reduce the need for invasive treatments. Self-reported family history is not useful for identifying high-risk women.     

It won't happen to me: lower perception of heart disease risk among women with family histories of breast cancer

BACKGROUND: The threat that breast cancer poses to American women, particularly to women with family histories of the disease, has received widespread attention in both medical and popular literatures. While this emphasis may have laudable consequences on breast cancer screening, it may also have a negative consequence, obscuring women's recognition of their risks for other health threats, such as heart disease. This study examined the possibility that women with family histories of breast cancer may be particularly susceptible to overestimating their risks of breast cancer while minimizing their risks of cardiovascular disease. METHODS: Healthy women with (n = 73) and without n = 104) family histories of breast cancer (64% African American, 26% Caucasian, 10% other ethnicities, mean age 41.7 years) were recruited from medical centers in New York City, and completed questionnaires concerning their family histories and perceptions of risk. RESULTS: Consistent with the study hypothesis, women with family histories of breast cancer had significantly higher perceived lifetime risk of breast cancer (P<0.0002) but lower perceived lifetime risk of heart disease (P<0.002) than women without family histories. Additionally, women with family histories of breast cancer had lower perceived colon cancer risk (P<0.02), suggesting that women with family histories of breast cancer may be underestimating their risks for a variety of diseases. CONCLUSION: The emphasis on breast cancer risk, especially for women with family histories of the disease, may need to be balanced by educational efforts concerning women's risk of other diseases, particularly cardiovascular disease.     

Everyday life when growing up with a mother with an intellectual or developmental disability: Four retrospective life-stories

Abstract

Background: The voices of those who have grown up in a family with maternal intellectual or developmental disability (IDD) are valuable for gaining an understanding of their situation, which is essential in order to be able to support these families and avoid potentially detrimental situations.

Aim: The study aim was to describe the experience of having grown up in a family where the mother has an IDD, with a focus on everyday life and perceived health consequences in adult life.

Method: A qualitative method with retrospective narrative interviews and narrative content analysis was chosen. In-depth interviews were performed with four women who had experiences of a childhood with maternal IDD.

Findings: Four themes emerged: Living under adverse circumstances; Dealing with one’s everyday life situation; Receiving insufficient support and wishing for more; and The echo from childhood into adult life. The findings revealed a distressing childhood, characterized by neglect, abuse, anxiety, and overburdening responsibilities, and also endeavors to keep the family situation a secret, while at the same time wanting the adult world to react.

Discussion: The findings can hopefully stimulate occupational therapists and other professionals to more effectively identify the situation of these children and provide support to prevent adverse future health conditions and poor well-being.     

Punjabi Immigrant Women’s Breast Cancer Stories

The breast cancer experiences of Punjabi immigrant women, who represent the most populace group of South Asians in Canada, need to be understood in order to inform culturally appropriate cancer services. The purpose of this qualitative study was to explore women’s stories of breast cancer in order to uncover how they made sense of their experiences. Interviews with twelve Punjabi immigrant women who had breast cancer within the last 8 years were available for this study. The four storylines that emerged from the ethnographic narrative analysis were: getting through a family crisis, dealing with just another health problem, living with never-ending fear and suffering, and learning a “lesson from God.” A minor theme, “being part of a close-knit family,” highlighted the family context as the most pronounced influence on the women’s experiences. These findings provide valuable insights into how women’s experiences of breast cancer were shaped by the intersections of culture, family, community, cancer treatments, and interactions with health care professionals.     

Prior Family Planning Experiences of Obese Women Seeking Abortion Care

BackgroundThe prevalence of obesity among women of reproductive age calls for research focused on strategies that ensure obese women receive high-quality reproductive health care. This study adds to this literature on service delivery by exploring obese women's experiences receiving or avoiding family planning care.MethodsWe included 651 women seeking abortion care who completed iPad surveys about their previous family planning experiences.FindingsOne quarter were classified as obese, with almost 5% morbidly obese. Only 1% of obese women reported avoiding family planning care. More than 12% of morbidly obese women reported not having their family planning needs met (pap smears, sexually transmitted infection testing, or ultrasonography). This is compared with only 2% among overweight and obese women and 0% among normal and underweight women. Almost 10% of obese and morbidly obese women reported that at least one of the previous family planning clinics they had visited was not prepared to provide care for heavier women and around 25% of obese women reported at least one item in the clinic (such as blood pressure cuffs and examination gowns) was not adequate for their size.ResultsContrary to expectations, we did not find that obese women avoided family planning care. However, morbidly obese women reported not having all of their family planning needs met when they attended care. Family planning providers should ensure that their facilities have the capacity to meet the family planning needs of obese women and that they have adequate equipment to care for this population of women.     

Guilt, blame and responsibility: men's understanding of their role in the transmission of BRCA1/2 mutations within their family

Men and women who have a family history of breast and/or ovarian cancer may be offered a predictive genetic test to determine whether or not they carry the family specific BRCA1/2 mutation. The sons and daughters of mutation carriers have a 50 per cent chance of inheriting a mutation, which will increase their risk of developing cancer. Little is known about at-risk men's feelings about the part they play in the transmission of BRCA1/2 mutations within their families. This study investigated high risk men's responses to BRCA1/2 predictive genetic testing. Seventeen in-depth interviews were undertaken with carrier (n= 5) and non-carrier men (n= 12). All men described genetic testing as a familial duty. It is observed that carriers and non-carriers mobilised differing explanations about their role in the aetiology of risk. It is noted that men engage in a form of narrative reconstruction in which they draw upon discourses of guilt and blame or fate and predestiny in an effort to present themselves as morally responsible or blameless. It is argued that narrative reconstruction enables these men to reconcile their genetic identity, self and family.     

Long-Term Worries after Colposcopy: Which Women Are at Increased Risk?

BackgroundA colposcopy examination is the main management option for women with an abnormal cervical screening test result. Although some women experience adverse psychological effects after colposcopy, those at greatest risk are unknown. We investigated predictors of worries about cervical cancer, sex, future fertility and general health during 12 to 30 months after colposcopy.MethodsWe invited 1,515 women, aged 20 to 59 years with low-grade cervical cytology who attended colposcopy to complete questionnaires at recruitment (∼8 weeks after cytology result) and after 12, 18, 24, and 30 months of follow up. Outcomes were worries about having cervical cancer, having sex, future fertility, and general health at any time during follow-up. Factors significantly associated with each outcome were identified using multiple logistic regression.ResultsAt one or more time points during follow-up, 40% of women reported worries about having cervical cancer, 26% about having sex, 24% about future fertility, and 60% about general health. For all outcomes except sex, worries reported at recruitment were associated with significantly increased risk of worries during follow-up. Significant anxiety at recruitment was associated with all worries during follow-up. Women diagnosed with CIN2+ had significantly higher risks of worries about cervical cancer and future fertility. Management received was associated significantly with worries about cervical cancer and having sex. Younger women significantly more often reported worries about future fertility, whereas women who had children had reduced risk of future fertility worries but increased risk of cervical cancer worries.ConclusionClinical, sociodemographic, lifestyle, and psychological factors predicted risk of reporting worries after colposcopy.     

Chieko's Story: Giving Voice to Survivors of Wife Abuse

Chieko's story relates in narrative form the childhood and early adult experiences of a Japanese woman who is learning to heal and rebuild her life after growing up in a violent home and ending an abusive marriage. This exemplar illustrates major processes and themes that emerged from a cross-cultural qualitative study of family violence. It also portrays universal aspects of this significant and pervasive health and social issue. This in-depth analysis and commentary on one woman's story that could have occurred almost anywhere uncovers hidden aspects contributing to the recidivism of this phenomenon. This story conveys hope for the many women and children who have no voice and for the clinicians who work with them.     

Primary Care Providers with More Experience and Stronger Self-Efficacy Beliefs Regarding Women Veterans Screen More Frequently for Interpersonal Violence

BackgroundMilitary sexual trauma (MST) and/or intimate partner violence (IPV) are common experiences in the growing group of women veterans using the Veterans Health Administration health care system. And even though MST screening is closely monitored at the facility level, little is known about individual primary care provider (PCP) behavior with regard to screening women for MST and IPV.ObjectivesTo understand how PCP experiences and beliefs regarding women's health care influence PCP-reported screening for MST and IPV.Research Design and ParticipantsWe administered a cross-sectional online survey from September 2014 through April 2015 (supplemented by a mailed survey between April and May 2015) to 281 PCPs in 12 Veterans Health Administration medical centers.Measures and AnalysisSurveys measured PCP-reported screening frequency for MST and IPV, experience with women veterans, self-efficacy, gender-sensitive beliefs, and perceived barriers to providing comprehensive care for women. We used multivariable ordered logistic regression analysis to identify correlates of screening, weighted for nonresponse and adjusted for clustering.ResultsNinety-four PCPs (34%) completed the survey. Being a designated women's health provider (p < .05) and stronger self-efficacy beliefs about screening women for MST (p < .001) were associated with reporting more frequent screening for MST. Being a designated women's health provider (p < .01), seeing women patients at least once per week (p < .001), and self-efficacy beliefs about screening women for IPV (p < .001) were associated with reporting more frequent screening for IPV.ConclusionsVeterans Health Administration initiatives to enhance PCP opportunities to screen women veterans for trauma and to strengthen self-efficacy beliefs about comprehensive women's health care may increase screening of women veterans for MST and IPV.