A more active parenting after attending Let's Get Organized - Experiences of parents with ADHD.

BACKGROUND: Parenting demands a high degree of attention, planning, and problem-solving, including time management, demands that can be challenging for parents with ADHD. Let's Get Organized (LGO) is an occupational therapy group intervention aiming at developing skills in time management, organisation and planning. There is a need to investigate if LGO may have an impact also on parenting. AIM: To describe how parents with ADHD experienced the intervention, their time management strategies, parenting and family life after the occupational therapy group intervention LGO. METHOD: Interviews were performed with 15 parents with ADHD, after completing LGO. Data were analysed using qualitative content analysis. RESULTS: The findings are described in one overarching main category, Active parenting and better relations within and outside the family through daily time management with three underlying generic categories: Let's Get Organized facilitates empowerment in daily life; The individual and family - both facilitators of and obstacles to implementation of time management strategies; and A changed parenting and family life. CONCLUSIONS AND SIGNIFICANCE: Participants experienced a positive impact on time management skills after LGO, which generated more active parenting and better predictability in the whole family. LGO can be a valuable intervention for parents with ADHD.

One-year follow-up after the time management group intervention Let's Get Organized.

BACKGROUND: Time management skills are essential to maintain occupations in everyday life. People with neurodevelopmental or mental disorders often experience persistent difficulties with managing time and organizing daily life, consequently, there is a need to establish interventions with sustainable results. AIM: The aim was to perform a one-year post-intervention follow-up after the intervention Let's Get Organized (LGO-S) for people with neurodevelopmental or mental disorders. METHODS: The study is a one-year follow-up of a single group pre-test-post-test design. Thirty-eight persons with difficulties in time management due to neurodevelopmental or mental disorders participated. Instruments to collect data were Assessment of Time Management Skills; Weekly Calendar Planning Activity and the Satisfaction with Daily Occupations instrument. Wilcoxons's signed-rank test was used to compare data over time. RESULTS: There were no significant differences in the participants' outcomes between post-intervention and one-year follow-up in time management skills and regulation of emotions, satisfaction with daily occupations, and global satisfaction. A significant improvement could be seen in the subscale organization and planning at the one-year follow-up compared to post-intervention. CONCLUSIONS: Improvements in time management skills, organization, and planning, regulation of emotions, and satisfaction with daily occupations after the LGO-S can be maintained in the long term.

Swedish University Students' Opinion Regarding Information About Soft Markers.

The aim of this study was to investigate the opinions of Swedish university students about information regarding soft markers, when observed at second trimester ultrasound screening. A cross-sectional survey, where 85 Swedish university students completed a study specific questionnaire containing eleven hypothetical scenarios, involving various parameters (disease/syndromes/malformations with different characteristics), and location of the markers. Almost all participants indicated that they would wish to be informed, prior to the ultrasound examination, about the assessment and significance of soft markers. However, the number of respondents who requested information about a potential actual finding was considerably less. Several participants wanted to be informed about detected markers associated to serious conditions but not when the marker indicated an increased risk for a treatable disease. Also, the specific location of the marker was of importance to the participants. The majority of respondents wished to be informed about the soft markers if they were observed in the heart or the brain of the foetus, compared to if they were located in the intestine or the skeleton. The students' opinion, in this study, implicate the importance of pre-examination information to enable expectant parents to make informed choice regarding the second trimester ultrasound screening as well as on reciving information of actual findings.

Fetal ultrasound examination and assessment of genetic soft markers in Sweden: are ethical principles respected?

OBJECTIVE: To explore procedures for providing information, assessment and documentation about ultrasound soft markers in Sweden. DESIGN: Descriptive, quantitative, cross-sectional survey. SAMPLE: Eighty-two percent of all obstetric ultrasound clinics in Sweden (covering >90% of routine fetal ultrasound examinations). METHODS: Postal questionnaire survey between December 2010 and January 2011. MAIN OUTCOME MEASURES: Items about provision of information, risk estimation, and follow-up strategies in relation to observed ultrasound soft markers. RESULTS: More than 96% of all fetal routine ultrasound examinations were performed at 15-21 gestational weeks, primarily by midwives. Half of the clinics replying wanted prospective parents to be provided with information, but 38 (78%) of the clinics did not routinely inform about assessment of soft markers before the examination. Follow up and decisions on whether to give information when soft markers were found were based on the number and type of the observed markers, whether other structural deviations existed, and on the woman's age and anxiety level. Only at eight clinics (17%) were parents informed about all soft marker findings. At 13 clinics (28%) observed markers were documented/recorded, even though the women were not informed. CONCLUSIONS: Information regarding the assessment and importance of observed soft markers seems to be inconsistent and insufficient. Provision of information and documentation of findings appear to be handled differently at obstetric ultrasound clinics. This suggests that Swedish ethical principles relating to healthcare and ultrasound examinations are incompletely followed and national guidelines appear to be necessary.

Factors influencing primary care physicians' decision to order prostate-specific antigen (PSA) test for men without prostate cancer.

BACKGROUND: Despite extensive ongoing clinical trials investigating appropriateness of prostate-specific antigen (PSA)-screening, the benefit of PSA-based screening for prostate cancer remains controversial due to the lack of clear evidence for effectiveness of population-based PSA-screening. Notwithstanding, the need to identify the determinants behind PSA-testing decisions, the number of studies that have examined factors affecting the physicians' decision as to whether PSA-testing should be ordered are few. The aim of the current study was to investigate how physician- and patient-related factors influence Swedish primary care physicians' decision to order a PSA test for men harboring no symptoms of prostate cancer within different age groups. METHODS: A total of 305 physicians filled out the study questionnaire containing items about physicians' attitudes towards PSA-testing and the probability of screening men within different age groups. RESULTS: The majority of physicians reported positive attitude towards PSA-testing. However, the likelihood of offering PSA-testing to young men was low, but increased with age. Physicians' opinion about PSA-test as a sufficient screening tool was the only variable affecting physicians' decision of ordering PSA-test regardless of patient age. The level of the patients' worry, and patients request were the most influential factors in age groups between 40 and 70 years old. Patients' physical symptoms were an indicator in age groups above 60 years. CONCLUSION: The decision to screen for prostate cancer using the PSA-test is influenced by several factors and not only those having direct clinical indication for prostate disease. This may lead to unnecessary treatment of some patients.

What information do cancer genetic counselees prioritize?

This study explored the informational needs of individuals attending genetic counseling for hereditary cancer, using a free-choice and a forced choice method. Prior to the consultation the informational needs of 334 counselees from Sweden and Norway were assessed by the QUOTE-gene (ca) questionnaire and by a study specific forced choice method, using Q-methodology. Questionnaire responses indicated that counselees' major concerns pertained to the need to be taken seriously, to be provided with sufficient risk estimation and medical/genetic information and to be involved in the decision making process. Furthermore, prior to counseling, counselees noted that the counselors' consideration and skillfulness were also extremely important. Analysis of the Q-sorting results revealed that counselees' needs could be assigned to one of five groups: the "need for facts; caring communication and medical information; information and support in communicating the genetic information to others; practical care and practical/medical information". Particularly noteworthy, counselees with varying backgrounds characteristics prioritized different needs. Cancer genetic counselees probably have different needs due to their medical and demographic background when attending genetic counseling. Addressing counselees' specific concerns more sufficiently and thereby increasing the overall effectiveness of the counseling session requires increased insight into individual needs, by for instance, utilizing screening methods such as QUOTE-gene (ca) prior to the counseling session.

Is genetic counseling a stressful event?

PURPOSE: The aim of this paper was to investigate whether cancer genetic counseling could be considered as a stressful event and associated with more anxiety and/or depression compared to other cancer-related events for instance attending mammography screening or receiving a cancer diagnosis. METHODS: A total of 4911 individuals from three Scandinavian countries were included in the study. Data was collected from individuals who had attended either cancer genetic counseling (self-referred and physician-referred) or routine mammography screening, were recalled for a second mammograpy due to a suspicious mammogram, had received a cancer diagnosis or had received medical follow-up after a breast cancer-surgery. Data from the genetic counseling group was also compared to normative data. Participants filled in the Hospital Anxiety and Depression Scale twice: prior to a potentially stressful event and 14 days after the event. RESULTS: Pre-counseling cancer genetic counselees reported significant lower level of anxiety compared to the cancer-related group, but higher levels of anxiety compared to the general population. Furthermore, the level of depression observed within the genetic counseling group was lower compared to other participants. Post-event there was no significant difference in anxiety levels between the cancer genetic counselees and all other groups; however, the level of depression reported in the self-referred group was significantly lower than observed in all other groups. Notably, the level of anxiety and depression had decreased significantly from pre-to post-events within the genetic counseling group. In the cancer-related group only the level of anxiety had decreased significantly post-event. CONCLUSION: Individuals who attend cancer genetic counseling do not suffer more anxiety or depression compared to all other cancer-related groups. However, some counselees might need additional sessions and extended support. Thus, identifying extremely worried individuals who need more support, and allocating further resources to their care, seems to be more sufficient.

Disclosing cancer genetic information within families: perspectives of counselees and their at-risk relatives.

PURPOSE: The aim of the present descriptive study was to investigate the experience of sharing genetic information among cancer genetic counselees and their at-risk relatives. METHODS: In total, 147 cancer genetic counselees and 81 of their at-risk relatives answered to a study specific questionnaire and/or were interviewed. Counselees' communication of genetic information to at-risk relatives was assessed with regard to who they informed, how they felt, and how they perceived their relatives' reactions. In addition, at-risk relatives' experiences of receiving genetic information were studied. RESULTS: Most of the counselees had shared the genetic information received at the counseling session personally with their at-risk relatives. The majority of the counselees (68%) reported positive or neutral feelings about sharing the genetic information with their relatives while 9% stated negative feelings. Counselees mostly interpreted the relatives' reactions to the information as positive or neutral (62% of responses), and in few cases as negative (14% of responses). About half of relatives reported positive or neutral reactions (54%) to the received information, while about one-fifth reported negative reactions (22%). Nevertheless, most relatives were satisfied with the received information and half of the relatives intended to seek genetic counseling themselves. CONCLUSION: Sharing genetic information to at-risk relatives appears to be accomplished without any major difficulties or negative feelings. However, more assistance may be needed to optimize the communication of the genetic information within at-risk families.

Does enhanced information at cancer genetic counseling improve counselees' knowledge, risk perception, satisfaction and negotiation of information to at-risk relatives?--a randomized study.

PURPOSE: The aim of the present randomized intervention study was to investigate the effect of receiving extended cancer genetic information on counselees' knowledge, risk perception, information sharing and satisfaction with the service. METHODS: In total, 147 counselees, affected by cancer and/or a family history of cancer, were randomized to extended or standard information. The levels of counselees' knowledge and personal risk estimations were measured at four time points. In addition, counselees' satisfaction with the counseling and sharing of the information to at-risk relatives was assessed. The intervention included meeting a specialist nurse, learning the breaking bad news method, receiving written material and video-taped counseling sessions. RESULTS: A significant increase in the level of knowledge in participants in the "breast cancer group" regardless of the randomization was observed over time. The correct estimation of personal risk increased significantly in both groups after two weeks, but declined at the eight month follow-up. Most of the participants had informed at-risk relatives about their visit at the cancer genetic clinic. The majority of respondents in both groups were highly satisfied with the counseling. The only observed effects of the intervention were that counselees in the intervention group were significantly more satisfied with the content of the given information and with the way of informing relatives. CONCLUSION: Apparently, the current genetic counseling is managed properly and extended information does not seem necessary in all cases. However, some counselees need additional sessions.

Cancer genetic counselees' self-reported psychological distress, changes in life, and adherence to recommended surveillance programs 3-7 years post counseling.

The aim of the present cross-sectional study was to investigate psychological distress, changes in life, adherence to surveillance programs and satisfaction with cancer genetic counseling based on Swedish participants' self-reported data. A total of 218 probands (72% response rate) affected by breast, breast/ovarian or colorectal cancer and/or a family history of cancer were surveyed 3-7 years after receiving cancer genetic counseling. Participants reported a relatively high level of anxiety and a low level of depression. Probands affected by colorectal cancer reported a higher level of depression than did non-affected individuals with a family history of colorectal cancer. Overall, the participants reported moderate changes in family relations, priorities and appreciation of daily life activities. The majority of at-risk probands reportedly adhered to recommended surveillance programs. The mean level of satisfaction with cancer genetic counseling was high. About half of the participants would have accepted additional counseling sessions, contact with a psychologist or further help concerning informing family members. The present results indicate no adverse effects of genetic counseling, but they do suggest that typical counseling procedures could be improved by provision of additional psychosocial support.

"Between Men": a psychosocial rehabilitation programme for men with prostate cancer.

The aim of this study was to evaluate the effect of psychosocial rehabilitation on newly diagnosed prostate cancer patients. The "Between Men" programme consisted of seven weekly sessions of physical training (Phys) alone, information (Info) alone or physical training plus information (PhysInfo). After diagnoses, patients (n = 211) were consecutively included, stratified and randomised to one of four groups: Phys, Info, PhysInfo or standard care control (C). A nurse specialised in urology, an urologist and a physiotherapist performed the interventions. Patients were followed up during one year with mailed standardised questionnaires. It could not be assumed that the "Between Men" programme had any effect on patients' anxiety and depression (HADS). Health-related quality of life (HRQOL) was associated with stage of disease but not with psychosocial intervention. Thus, Physical Function (PF), Role Function (RF) and Fatigue (FA) were inferior among patients with, than without, metastases of prostate cancer both at baseline and at the 12-month follow-up. This randomized study did not demonstrate any significant effect of psychosocial rehabilitation among prostate cancer patients. Considering the low rate (1/2), of included/eligible patients a less complicated design (intervention versus control) would have been preferred in order to increase power.