Parenting Science Gang : radical co-creation of research projects led by parents of young children

Background Parents are increasingly searching online for information supported by research but can find it difficult to identify results relevant to their own experiences. More troublingly, a number of studies indicate that parenting information found online often can be misleading or wrong. The goal of the Parenting Science Gang (PSG) project was to use the power of the Internet to help parents ask questions they wanted to have answered by scientific research and to feel confident in assessing research evidence. Methods By using Facebook to recruit groups and facilitate interactions, PSG was able to engage fully the target public of parents of young children in the radical co-production of scientific studies, while not creating an undue burden on time or restricting participants due to disability, financial status or location. By giving parents true partnership and control of creation of projects, PSG ensured that the chosen questions were ones that were of most relevance and interest to them. Results This paper presents a summary of eight projects, with three in more detail, designed and implemented by PSG Facebook groups in collaboration with experts. Most projects had health related themes, often prompted by dissatisfaction with treatment of parents by health professionals or by feelings of being marginalised by pregnancy and motherhood, as well as by the lack of evidence for their questions and concerns. The PSG approach meant that these frustrations were channelled into actions. All eight of the PSG groups engaged in meaningful interactions with experts and co-produced studies with the groups defining the questions of interest. Conclusions This radically user-led design meant that the PSG staff and the collaborating experts had to live with a high degree of uncertainty. Nevertheless, PSG achieved its goal of academically productive, truly co-produced projects, but as important were the positive effects it had on many of the participants, both parents and experts. At the point of writing this paper, PSG projects have led to outputs including at least eight papers published, in press or in preparation, seven conference presentations, testimony to the Infant Feeding All-Party Parliamentary Group, and with more to come

Cross-cultural study: experience, understanding of menopause, and related therapies in Australian and Laotian women

OBJECTIVE: The aim of this study was to investigate and compare symptom experiences, beliefs, attitudes, and understanding of menopause and menopausal therapies in Australian and Laotian women. METHODS: This was a cross-cultural, questionnaire-based study involving 108 women (56 Australian women and 52 Laotian women aged 40-65 y) attending outpatient clinics in Australia and Laos. Descriptive statistics and univariate analysis were conducted using Student's t test or Mann-Whitney U test, where appropriate. RESULTS: Psychological symptoms, depression, vasomotor symptoms, and sexual dysfunction were significantly higher in Australian women compared with Laotian women (P < 0.05). Australian women perceived the meaning of menopause as aging (57%), whereas most Laotian women reported not knowing what menopause meant to them (81%). Australian women's fears about menopause included weight gain (43%), aging (41%), and breast cancer (38%), whereas Laotian women reported not knowing about potential menopausal problems (85%). Exercise (55%), education and awareness (46%), and improving lifestyle (41%) were reported by Australian women as being effective in alleviating menopausal symptoms, with only 21% reporting not knowing what was effective compared with 83% of Laotian women. Many women reported not knowing the risks/benefits of hormonal therapies (50% of Australian women and 87% of Laotian women) and herbal therapies (79% of Australian women and 92% of Laotian women). General practitioners were the most common source of menopause information for both Australians (73%) and Laotians (67%). CONCLUSIONS: Sociocultural factors influence women's perception of menopause. Psychological symptoms, sexual dysfunction, and vasomotor symptoms are more commonly reported by Australian women than by Laotian women. Women have a limited understanding of the risks/benefits of menopausal therapies, and culturally appropriate education is needed.Sayakhot, Padaphet, Vincent, Amanda, Teede, Helen

Breast cancer and menopause: Perceptions of diagnosis, menopausal therapies and health behaviors

OBJECTIVES: The aim of this study was to investigate the perception and experience of menopause diagnosis and therapies, the information provided and health behaviors in younger women with breast cancer. METHODS: The questionnaire study was completed by 114 women, aged 40-51 years, with non-metastatic breast cancer. Women were recruited from outpatient clinics and the community. Descriptive statistics were completed. RESULTS: Most women were satisfied with the manner in which they were informed of the breast cancer (69%) and the menopause (59%) diagnoses. Although 80% of women were given breast cancer information, only 54% were given menopause information at diagnosis. Women were least satisfied (26%) with information regarding the long-term complications of menopause. Women perceived exercise (68%) and improving lifestyle (61%) as most effective in alleviating symptoms of menopause. The majority of women reported that they did not understand the risks/benefits of 'bioidentical' hormones (79%) and herbal therapies (78%), while 58% perceived hormone replacement therapies as associated with an increased risk of breast cancer. Most women reported weight gain (68%) and osteoporosis (67%) as the most common problems/fears regarding menopause. However, regarding health behaviors, only 56% reported having relevant tests including a blood sugar test or a bone density test. CONCLUSION: While information needs regarding breast cancer appear well met in younger women, unmet information needs regarding menopause after breast cancer persist. Further education and support are required for these women to optimize health screening and prevention behaviors and to ensure informed decision-making regarding menopause treatment options.P. Sayakhot, A. Vincent and H. Teed

Differences in clinician understanding and management of early menopause after breast cancer

OBJECTIVE: Investigation of clinicians' understanding of early menopause diagnosis/management in women with breast cancer. METHODS: A cross-sectional study of 176 randomly recruited Australian clinicians (35 gynecologists, 35 endocrinologists, 36 oncologists, 35 breast surgeons and 35 general practitioners (GPs)) involved in the care of women with breast cancer. This questionnaire study utilized an index case to assess understanding of early menopause diagnosis and management. Analysis involved descriptive statistics, χ² tests and Student's t-test. RESULTS: Significant differences between clinician groups regarding diagnostic criteria for early menopause were observed; gynecologists, endocrinologists and GPs selected amenorrhea > 12 months, whereas oncologists and breast surgeons selected elevated serum follicle stimulating hormone level (p < 0.05). Non-hormonal treatment was preferred by most clinician groups. Complementary/alternative medicines were more commonly prescribed by breast surgeons (57%), gynecologists (54%) and endocrinologists (49%) compared to oncologists (28%) or GPs (9%) (p = 0.0001). Exercise (63%) and nutrition (66%) were selected by most gynecologists for treatment of hot flushes, whereas endocrinologists (91%), oncologists (94%), breast surgeons (69%) and GPs (63%) prescribed venlafaxine. Hormone therapy was mainly prescribed by breast surgeons (43%) compared to other groups (p = 0.001). Most clinicians reported that the main problem with menopausal therapies was failure to resolve hot flushes. Exercise, lifestyle and stress management were recommended by all clinician groups for treatment of anxiety/depression. CONCLUSION: This exploratory study demonstrated a lack of consensus between clinician groups in their investigation, diagnosis and management of early menopause in women with breast cancer, with implications for both diagnosis and treatment.P. Sayakhot, H. J. Teede, M. Gibson-Helm & A. Vincen

Sleep difficulty mediates effects of vasomotor symptoms on mood in younger breast cancer survivors

Objective: Treatment-induced early menopause occurs in > 80% of premenopausal women diagnosed with breast cancer. This study explored the relationship between vasomotor symptoms (VMS), sleep and mood in women aged 40-51 years with non-metastatic breast cancer. Methods: Cross-sectional study using validated questionnaires (Greene Climacteric scale and Hospital Anxiety and Depression Scale, HADS). Women (n = 114) were recruited from the community and hospital outpatient clinics. Frequency determination and structural equation modeling (SEMod) were used to examine the relationship between the latent variables: VMS, anxiety, and depression, and the indicator variable: difficulty sleeping. Results: Participants' mean age was 47 years and 94% became menopausal after breast cancer diagnosis. Difficulty sleeping was reported by 82% of women with 46% reporting (Likert scale) 'quite a bit/extremely'. Most women reported night sweats (77% of women: 47% reporting 'quite a bit/extremely') and hot flushes (84% of women: 50% reporting 'quite a bit/extremely'). HADS scores indicated clinically relevant depression and anxiety in 98% and 99% of women, respectively. SEMod revealed that VMS contributed to difficulty sleeping (standardized coefficient = 0.54; p < 0.001) and difficulty sleeping mediated the relationship between VMS and anxiety (standardized coefficient = 0.34; p = 0.03). However, difficulty sleeping did not have a significant direct impact on depression (standardized coefficient = -0.03; p = 0.8), although anxiety was a strong predictor of depression (standardized coefficient = 0.83; p = 0.015). Conclusions: VMS, sleep and mood disturbance are commonly experienced by younger women with breast cancer. Using SEMod, we demonstrate for the first time that VMS may directly influence sleep in these women. VMS may have an indirect effect on mood, partly mediated by sleep difficulty.A.J. Vincent, S. Ranasinha, P. Sayakhot, D. Mansfield and H.J. Teed