[Show abstract][Hide abstract] ABSTRACT: Some women at risk for hereditary breast cancer are at increased risk of psychological distress. In order to tailor support for individual women, the availability of a tool enabling the identification of psychologically vulnerable women at an early stage is warranted. The objectives of this study were (1) to explore long-term psychological distress in women at risk for hereditary breast cancer adhering to regular surveillance, and (2) to identify women being vulnerable for long-term psychological distress, defined in terms of a multifactorial risk profile.
General distress and cancer-related distress were assessed at baseline (T0) and after 5–8 years (T1) in 197 high-risk women adhering to breast cancer surveillance. Coping styles, occurrence of breast cancer in the family of origin, breast cancer risk perception, and frequency of breast self-examination, as assessed at T0, were examined as predictor variables for long-term distress (T1).
Across time, women reported a significant reduction in intrusion and avoidance. Intrusion levels were increased among women who had lost a first-degree relative to breast cancer. Predictors of increased long-term distress were passive and palliative coping styles, excessive breast self-examination, and overestimation of breast cancer risk. On the other hand, coping through fostering reassuring thoughts was predictive for decreased long-term distress.
On the basis of the identified risk profile, it is possible to identify vulnerable women at an early stage, who then may be offered additional and individually tailored support. Copyright
[Show abstract][Hide abstract] ABSTRACT: The objectives of the present study were to (1) evaluate whether social and personal resources were independently related to psychological distress and (2) examine the interrelationships of social and personal resources in women at risk for hereditary breast cancer.
General and breast cancer specific distress, family communication regarding hereditary breast cancer, perceived social support, self-esteem, self-concept, and demographics were assessed in 222 high-risk women, having opted either for regular surveillance or prophylactic surgery.
Structural equation modeling showed that (1) both personal and social resources were independently associated with psychological distress and (2) the associations between social resources and psychological distress were partially mediated by personal resources. Support from family and friends was associated with a higher level of self-esteem, which in turn was associated with less general distress. Furthermore, communication regarding cancer within the nuclear family was associated with decreased feelings of stigmatization, which in turn was associated with less general and breast cancer specific distress. Moreover, open communication within the family was associated with a reduced sense of vulnerability.
Health workers involved in the care of high-risk women should carefully monitor women's personal and social resources, and if compromised refer them for appropriate support.
[Show abstract][Hide abstract] ABSTRACT: Hereditary breast cancer has a profound impact on individual family members and on their mutual communication and interactions. The way at-risk women cope with the threat of hereditary breast cancer may depend on the quality of family communication about hereditary breast cancer and on the perceived social support from family and friends. Objective: To examine the associations of family communication and social support with long-term psychological distress in a group of women at risk for hereditary breast cancer, who opted either for regular breast surveillance or prophylactic surgery.
The study cohort consisted of 222 women at risk for hereditary breast cancer, who previously participated in a study on the psychological consequences of either regular breast cancer surveillance or prophylactic surgery. General and breast cancer specific distress, hereditary cancer-related family communication, perceived social support, and demographics were assessed.
Using structural equation modelling, we found that open communication about hereditary cancer within the family was associated with less general and breast cancer specific distress. In addition, perceived support from family and friends was indirectly associated with less general and breast cancer-specific distress through open communication within the family.
These findings indicate that family communication and perceived social support from friends and family are of paramount importance in the long-term adaptation to being at risk for hereditary breast cancer. Attention for these issues needs to be incorporated in the care of women at risk for hereditary breast cancer.
[Show abstract][Hide abstract] ABSTRACT: To explore the course of psychological distress and body image at long-term follow-up (6-9 years) after prophylactic mastectomy and breast reconstruction (PM/BR) in women at risk for hereditary breast cancer, and to identify pre-PM risk factors for poor body image on the long-term.
Psychological distress (general and breast cancer specific) and body image (general and breast specific) were assessed in 36 high-risk women before PM (T0), at 6 months (T1) and 6-9 years (T2) after PM/BR. Investigated predictive variables (assessed at T0) for long-term body image (assessed at T2) included psychological distress, body image and coping styles.
Breast cancer specific and general distress significantly decreased from T0 to T1 as well as from T1 to T2. Problems regarding breast related and general body image were significantly higher at T1 than at T0. Subsequently, breast related body image scores significantly decreased from T1 to T2, while the decrease in general body image scores were not significant. Active coping and seeking social support were predictive of lower scores (i.e. less problems) on breast related and general body image at long-term follow-up. Furthermore, higher scores on general body image before PM/BR were predictive for increased general body image scores at long-term follow-up.
Our findings indicate that psychological distress is decreased after PM/BR, at the cost of persistent problems regarding body image. Exploration of coping styles and body image perception before PM/BR may help to identify vulnerable women who may benefit from additional support.
Full-text · Article · Nov 2011 · European journal of cancer (Oxford, England: 1990)
[Show abstract][Hide abstract] ABSTRACT: Clarification of the role of several aspects of self-concept regarding psychological distress in women at risk of hereditary breast cancer will help to target counselling and psychosocial interventions more appropriately. In this study, we aimed (1) to examine the role of general self-esteem and specific aspects of self-concept (i.e. stigma, vulnerability, and mastery) in psychological distress in women at risk of hereditary breast cancer and (2) to compare the relative importance of these self-concept aspects in psychological distress in women with low versus high self-esteem.
General and breast-cancer-specific distress, self-esteem, self-concept, and demographics were assessed in 246 women being at risk of hereditary breast cancer, who opted either for regular breast surveillance or prophylactic surgery.
In the total study group, self-esteem was negatively associated with general distress. Furthermore, feeling stigmatized was strongly associated with more breast-cancer-specific distress, and to a lesser degree with general distress. In women with low-self esteem, feelings of stigmatization were strongly associated with higher levels of both breast-cancer-specific and general distress, while a sense of mastery was associated with less general distress. For women with high self-esteem, feelings of both stigmatization and vulnerability were associated with more breast-cancer-specific distress, whereas there were no significant associations with general distress.
Psychosocial interventions or support groups for women at risk of hereditary breast cancer should focus on self-esteem and feelings of stigmatization and isolation, and consequently tailor the interventions on specific items for respective women.
[Show abstract][Hide abstract] ABSTRACT: Peutz-Jeghers syndrome (PJS) is a hereditary disorder caused by LKB1 gene mutations, and is associated with considerable morbidity and decreased life expectancy. This study was conducted to assess the attitude of PJS patients towards family planning, prenatal diagnosis (PND) and pregnancy termination, and pre-implantation genetic diagnosis (PGD). In a cross-sectional study, 61 adult PJS patients were asked to complete a questionnaire concerning genetic testing, family planning, PND and PGD. The questionnaire was completed by 52 patients (85% response rate, 44% males) with a median age of 44 (range 18-74) years. A total of 37 (71%) respondents had undergone genetic testing. In all, 24 respondents (46%, 75% males) had children. A total of 15 (29%) respondents reported that their diagnosis of PJS had influenced their decisions regarding family planning, including 10 patients (19%, 9/10 females) who did not want to have children because of their disease. Termination of pregnancy after PND in case of a foetus with PJS was considered 'acceptable' for 15% of the respondents, whereas 52% considered PGD acceptable. In conclusion, the diagnosis of PJS influences the decisions regarding family planning in one third of PJS patients, especially in women. Most patients have a negative attitude towards pregnancy termination after PND, while PGD in case of PJS is judged more acceptable. These results emphasise the importance of discussing aspects regarding family planning with PJS patients, including PND and PGD.
Full-text · Article · Aug 2011 · European journal of human genetics: EJHG
[Show abstract][Hide abstract] ABSTRACT: Background
Partners are an importance source of support for women at risk for hereditary breast cancer. The impact of regular breast cancer surveillance in at-risk women on psychological distress in the partners of these women is unknown. This study aimed to (1) examine the levels and courses of psychological distress of partners and high-risk women around breast cancer surveillance appointments at the clinic, (2) to explore the relationship between partners’ and women's distress, and (3) to identify factors that were associated with distress in partners.
Preview · Article · Dec 2010 · American journal of men's health
[Show abstract][Hide abstract] ABSTRACT: Little is known about psychological distress and quality of life (QoL) in patients with Peutz-Jeghers syndrome (PJS), a rare hereditary disorder. We aimed to assess QoL and psychological distress in PJS patients compared to the general population, and to evaluate determinants of QoL and psychological distress in a cross-sectional study. PJS patients completed a questionnaire on QoL, psychological distress, and illness perceptions. The questionnaire was returned by 52 patients (85% response rate, 56% females, median age 44.5 years). PJS patients reported similar anxiety (p = 0.57) and depression (p = 0.61) scores as the general population. They reported a lower general health perception (p = 0.003), more limitations due to emotional problems (p = 0.045) and a lower mental well-being (p = 0.036). Strong beliefs in negative consequences of PJS on daily life, a relapsing course of the disease, strong emotional reactions to PJS, and female gender were major determinants for a lower QoL. PJS patients experience a similar level of psychological distress as the general population, but a poorer general health perception, more limitations due to emotional problems, and a poorer mental QoL. Illness perceptions and female gender were major predictors for this lower QoL. These results may help to recognize PJS patients who might benefit from psychological support.
[Show abstract][Hide abstract] ABSTRACT: Psychotic disorders are more common in people from ethnic minorities. If psychosis exists as a continuous phenotype, ethnic disparities in psychotic disorder will be accompanied by similar ethnic disparities in the rate of psychotic symptoms. This study examined ethnic disparities in self-reported hallucinations in a population sample of young adults. MethodA cross-sectional population survey (n=2258) was carried out in the south-west Netherlands. Seven ethnic groups were delineated: Dutch natives, Turks, Moroccans, Surinamese/Antilleans, Indonesians, other non-Western immigrants (mostly from Africa or Asia) and Western immigrants (mostly from Western Europe). Self-reported auditory and visual hallucinations were assessed with the Adult Self-Report (ASR). Indicators of social adversity included social difficulties and a significant drop in financial resources.
Compared to Dutch natives, Turkish females [odds ratio (OR) 13.48, 95% confidence interval (CI) 5.97-30.42], Moroccan males (OR 8.36, 95% CI 3.29-21.22), Surinamese/Antilleans (OR 2.19, 95% CI 1.05-4.58), Indonesians (OR 4.15, 95% CI 1.69-10.19) and other non-Western immigrants (OR 3.57, 95% CI 1.62-7.85) were more likely to report hallucinations, whereas Western immigrants, Turkish males and Moroccan females did not differ from their Dutch counterparts. When adjusting for social adversity, the ORs for self-reported hallucinations among the non-Western immigrant groups showed considerable reductions of 28% to 52%.
In a general population sample, several non-Western immigrant groups reported hallucinations more often than Dutch natives, which is consistent with the higher incidence of psychotic disorders in most of these groups. The associations between ethnicity and hallucinations diminished after adjustment for social adversity, which supports the view that adverse social experiences contribute to the higher rate of psychosis among migrants.
No preview · Article · Sep 2008 · Psychological Medicine
[Show abstract][Hide abstract] ABSTRACT: Mental health problems in young adults are frequent and impairing, but are often left untreated. This study among young adults with self-perceived mental health problems examines beliefs about mental health problems (i.e. their cause, consequences, timeline, and controllability) and help-seeking behaviour.
A cross-sectional population survey (n = 2,258) in the south-west Netherlands. Participants were included who reported having mental health problems during the past year (n = 830). Beliefs about cause, consequences, timeline, and controllability of self-perceived mental health problems were assessed with the Illness Perception Questionnaire. Internalizing and externalizing psychopathology was assessed with the Adult Self-Report.
A multivariate logistic regression analysis indicates that independent of sex, age, and severity of psychopathology, higher levels on the intra-psychic causes scale (OR = 1.95, 95%CI = 1.48-2.58), the consequences scale (OR = 1.81, 95%CI = 1.40-2.33), and the treatment control scale (OR = 1.97, 95%CI = 1.60-2.41) are associated with an increased likelihood of mental health service use, while higher levels of personal control (OR = 0.76, 95%CI = 0.62-0.93) are associated with a decreased likelihood.
Beliefs that may encourage young adults with mental health problems to seek professional help include the beliefs that mental health problems have adverse consequences and that treatment can help. Since these beliefs are related to young adults' knowledge of mental health problems, help-seeking behavior may be encouraged by educating young adults about mental health problems and the effective mental health treatments which are available.
No preview · Article · Sep 2008 · Social Psychiatry
[Show abstract][Hide abstract] ABSTRACT: Mental health problems often emerge in young adulthood. Although effective treatments are available, young adults are unlikely to seek professional help. This study examined barriers-to-care in young adults with serious internalizing or externalizing problems.
Population-based study among 2258 19-32-year olds in the south-west region of the Netherlands. Barriers-to-care were examined in participants with serious internalizing or externalizing problems who did not seek professional help. A potential barrier was that participants denied that they had mental health problems. In those admitting problems, barriers were assessed with the Barriers-to-Care checklist and analyzed with Latent Class Analysis.
Of 362 participants with serious internalizing or externalizing problems 237 (65.5%) did not seek professional help. Of non-help-seeking young adults 36% denied having problems; additionally Latent Class Analysis revealed that 37% Perceived Problems as Self-Limiting (e.g., they believed that problems were not serious) and 24% Perceived Help-Seeking Negatively (e.g., they believed that treatment would not help).
Young adults' barriers-to-care reflect limitations in their knowledge of mental health problems and available treatments, but possibly also a failure of existing mental health services to engage young people. More knowledge is urgently needed about the effectiveness of mental health treatments for young adults specifically.
Treatment accessibility for young adults may be augmented by improving their mental health literacy.
No preview · Article · Jul 2008 · Patient Education and Counseling
[Show abstract][Hide abstract] ABSTRACT: Mental health problems are highly prevalent in young adults. Despite possibilities for effective treatment, only about one-third of young adults with mental health problems seek professional help. Little knowledge exists of which groups of young adults are underusing mental health services and for what reasons. The present study examined socio-demographic inequalities in the use of mental health services by young adults, and examined whether such inequalities were attributable to differences in objective need, subjective need, predisposing or enabling factors.
Cross-sectional study among the general population aged 19-32 years (2,258 respondents). A postal survey was administered including questions on socio-demographic factors and mental health service use. Data were analyzed with logistic regression analysis.
All respondents with serious internalizing and externalizing problems (n = 367).
Twelve-month primary and specialty mental health services use.
Only 34.6% of young adults with psychopathology had used any mental health services: 16.2% had used only primary mental health services and 18.4% had used specialty mental health services. No socio-demographic differences were found in the use of only primary mental health services. However, recipients of specialty mental health services were more often female (OR = 2.12, 95% CI = 1.14-3.96), economically inactive (OR = 3.12, 95% CI = 1.59-6.09) or students (OR = 2.38, 95% CI = 1.05-5.42) and they were less often higher educated (OR = 0.49, 95% CI = 0.25-0.97). The higher odds ratio for specialty service use among young adults who were female or economically inactive attenuated when adjusting for need for care. The other socio-demographic disparities in specialty service use did not attenuate when adjusting for need, enabling or predisposing factors.
Among young adults, equal use of specialty mental health services for equal needs has not been achieved. The underserved groups of young adults oppose the traditionally underserved groups in the general population, and may inform interventions aimed at improving young people's help-seeking behaviours.
No preview · Article · Jun 2008 · Social Psychiatry and Psychiatric Epidemiology
[Show abstract][Hide abstract] ABSTRACT: This study examined levels of internalizing and externalizing problems over the full spectrum of alcohol consumption in young adults and identified whether social factors account for the associations of alcohol consumption with internalizing and externalizing problems.
This study was a cross-sectional random sample study among 2,258 young adult men and women from the general population of southwest Netherlands. Five groups were distinguished: (1) nondrinkers; (2) occasional drinkers (monthly or less); and regular drinkers (two or more times monthly) who were further classified into (3) low-level drinkers (one to two drinks per occasion), (4) higher-level drinkers (three to four drinks per occasion), or (5) excessive drinkers (five or more drinks per occasion). Internalizing problems and externalizing problems, social support, and negative social exchange were measured with standardized questionnaires.
U-shaped associations were found between alcohol consumption and various internalizing problems. Low social support accounted for higher rates of internalizing problems in nondrinkers and negative social exchange accounted for higher rates of internalizing problems in excessive drinkers. Also, excessive drinking was associated with various externalizing problems. A J-shaped association was found between alcohol consumption and aggressive behavior, with higher rates for occasional and excessive drinkers compared with low-level drinkers. Negative social exchange partly accounted for associations between alcohol consumption and externalizing problems.
Nondrinkers and excessive drinkers differ from low-level drinkers in risk factors for poor mental health, and these factors may contribute to their elevated rates of mental health problems. Interventions that address the experience of negative social exchange may produce both mental health benefits and a reduction of excessive drinking.
No preview · Article · Feb 2008 · Journal of studies on alcohol and drugs
[Show abstract][Hide abstract] ABSTRACT: Only up to one-third of young adults with a mental disorder seek professional help. The reasons for this low help-seeking rate are largely unclear. The first aim of this thesis is to explain why young adults are unlikely to seek professional help when facing mental health problems. The second aim is to provide insight into problem behaviours that typically first emerge in young adulthood: i.e., psychotic symptoms and problems related to alcohol use.