Browsing by Subject "RETURN"

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  • Mattila-Holappa, Pauliina; Kausto, Johanna; Aalto, Ville; Kaila-Kangas, Leena; Kivimäki, Mika; Oksanen, Tuula; Ervasti, Jenni (2021)
    PurposeAlternative duty work is a procedure that enables an employee with a short-term disability to perform modified duties as an alternative to sickness absence. We examined whether the implementation of an alternative duty policy was associated with reduced sickness absence in the Finnish public sector.MethodsTwo city administrations (A and D) that implemented an alternative duty work policy to their employees (n=5341 and n=7538) served as our intervention cities, and two city administrations (B and C) that did not implement the policy represented the reference cities (n=6976 and n=6720). The outcomes were the number of annual days, all episodes, and short-term (
  • Partanen, Eino; Laari, Siiri P K; Kantele, Oona Karoliina; Kämppi, Leena S; Nybo, Taina Tuulikki (2022)
    Objectives: Previous studies have shown that younger age, higher education, and seizure freedom after epilepsy surgery are associated with employment. However, very few studies have investigated associations with cognition and employment status in epilepsy surgery patients.Methods: This retrospective study consists of 46 adult patients, who underwent resective epilepsy surgery in the Helsinki University Hospital between 2010 and 2018 and who had been assessed by a neuropsychologist prior to surgery and 6 months after surgery using a systematic test battery. In addition to neuropsychological evaluation, neurologists assessed the patients prior to surgery and followed up the patients up to 24 months after the surgery and evaluated work status of the patients. Logistic regression models were used to assess the effects of cognition on changes in employment status, while controlling for age and education. Results: Out of the 46 patients 38 (82.6%) were seizure free and 7 (15.2%) had their seizures reduced 2 years postsurgically. From prior to surgery to 2 years postsurgery, use of antiseizure medication was reduced in most of the patients, mean reduction of the dosage being 26.9%. Employment status improved in 10 (21.7%) patients, remained unchanged in 27 (58.7%) and worsened in 3 (6.5%). An additional 6 patients were already not working prior to surgery. Subsequent analyses are based on the subsample of 37 patients whose employment status improved or remained unchanged. Mistakes in executive function tasks (p = 0.048) and working memory performance (p = 0.020) differentiated between the group whose employment status remained similar and those who were able to improve their employment status. Epilepsy surgery outcome or changes in antiseizure medication (ASM) use were not associated with changes in employment status.Conclusions: In the subsample of 37 patients, errors in executive function tasks and poorer working memory differentiated patients whose employment status did not change from those patients who could improve their employment status. Problems in executive function and working memory tasks might hinder performance in a complex work environment. When assessing the risks and opportunities in returning to work after surgery, difficulties in working memory and executive function performance should be taken into consideration as they may predispose the patient to challenges at work.(c) 2022 The Authors. Published by Elsevier Inc. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/).
  • Saastamoinen, Antti; Hyttinen, Virva; Kortelainen, Mika; Aaltio, Juho; Auranen, Mari; Ylikallio, Emil; Lönnqvist, Tuula; Sainio, Markus; Suomalainen, Anu; Tyynismaa, Henna; Isohanni, Pirjo (2020)
    This study examines how parents of pediatric patients might differ in their views and attitudes towards genetic technology and information when compared to adult patients. There is surprisingly little evidence on how parents compare to other parts of population in their attitudes. Previous empirical studies often relate health-related preferences and attitudes to factors such as age, education, and income instead of parental status, thus evading comparison of parents to others as health-related decision makers. Findings related to the parental status can be useful when implementing genetic technology in clinical practice. We conducted a survey of views on genetic technology and information for groups of adult neurology patients (n = 68) and parents of pediatric neurology patients (n = 31) to shed some light on this issue. In addition to our own survey instrument, we conducted other surveys to gain insight on psychosocial factors that might affect these attitudes. The results suggest that parents are more concerned about their children's genetic risk factors when compared to the attitudes of adult patients about their own risk. For both groups, negative emotional state was associated with more concerns towards genetic information. Our study provides insights on how parental views might affect the acceptance of genetic technology and information.
  • Ristagno, Giuseppe; Latini, Roberto; Plebani, Mario; Zaninotto, Martina; Vaahersalo, Jukka; Masson, Serge; Tiainen, Marjaana; Kurola, Jouni; Gaspari, Flavio; Milani, Valentina; Pettila, Ville; Skrifvars, Markus Benedikt; FINNRESUSCI Study Grp (2015)
    Introduction: We studied associations of the stress hormones copeptin and cortisol with outcome and organ dysfunction after out-of-hospital cardiac arrest (OHCA). Methods: Plasma was obtained after consent from next of kin in the FINNRESUSCI study conducted in 21 Finnish intensive care units (ICUs) between 2010 and 2011. We measured plasma copeptin (pmol/L) and free cortisol (nmol/L) on ICU admission (245 patients) and at 48 hours (additional 33 patients). Organ dysfunction was categorised with 24-hour Sequential Organ Failure Assessment (SOFA) scores. Twelve-month neurological outcome (available in 276 patients) was classified with cerebral performance categories (CPC) and dichotomised into good (CPC 1 or 2) or poor (CPC 3 to 5). Data are presented as medians and interquartile ranges (IQRs). A Mann-Whitney U test, multiple linear and logistic regression tests with odds ratios (ORs) 95% confidence intervals (CIs) and beta (B) values, repeated measure analysis of variance, and receiver operating characteristic curves with area under the curve (AUC) were performed. Results: Patients with a poor 12-month outcome had higher levels of admission copeptin (89, IQR 41 to 193 versus 51, IQR 29 to 111 pmol/L, P = 0.0014) and cortisol (728, IQR 522 to 1,017 versus 576, IQR 355 to 850 nmol/L, P = 0.0013). Copeptin levels fell between admission and 48 hours (P Conclusions: Admission copeptin and free cortisol were not of prognostic value regarding 12-month neurological outcome after OHCA. Higher admission copeptin and cortisol were associated with ICU death, and copeptin predicted subsequent organ dysfunction.
  • Wikstrom, Miia; Anttila, Heidi; Savinainen, Minna; Kouvonen, Anne; Joensuu, Matti (2020)
    BackgroundThe unemployed have lower work ability and poorer health than the employed. This situation deteriorates when unemployment continues. The long-term unemployed often have co-morbidities and face many other challenges. This increases the need for a multidimensional assessment of work ability and functioning in different service settings. In this study, we describe the development and analyse the content validity of the Abilitator, a self-report questionnaire on work ability and functioning for those in a weak labour market position.MethodsThe Abilitator was developed in 2014-2017. Its construct was assessed by members of academic expert panels (n=30), practical expert panels of professionals (n=700) and target group clients (n=28). The structure and the content of the questionnaire was co-developed in 29 workshops and adjusted twice based on the expert panels' feedback. The Abilitator was also implemented among target group clients (n=3360) in different services and projects. During its development the Abilitator was linked to the International Classification of Functioning, Disability and Health (ICF). The content validation process followed the guidelines recommended by the Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) panel.ResultsThe construct of the Abilitator combines the multidimensional and biopsychosocial models of work ability and functioning. It also includes aspects of social inclusion and employability. It evaluates social, psychological, cognitive and physical functioning, and the ability to cope with everyday life. The content of these concepts was validated by the academic and practical expert panels. The Abilitator's 79 ICF codes covered 57% of the Generic, 77% of the Brief Vocational Rehabilitation, and 8% of the Minimal Environmental ICF Core Sets. When compared with the Work Ability Index (WAI) and the World Health Organization Disability Assessment Schedule (WHODAS 2.0), the direct equivalences of the ICF codes were 36 and 44%, respectively.ConclusionThe Abilitator sufficiently comprehensively covers the relevant aspects to enable the assessment of the overall work ability and functioning of the population in a weak labour market position.
  • Taponen, Saara; Lehtimäki, Lauri; Karvala, Kirsi; Luukkonen, Ritva; Uitti, Jukka (2018)
    Background: Asthmatics confront inconveniences in working life that make it more difficult to pursue a sustainable career, such as unemployment and work disability. Ways of dealing with these inconveniences may be career changes. More needs to be known about the backgrounds and consequences of career changes among asthmatics, especially their relation to asthma or a change in asthma symptoms. The aim of this study was to compare earlier career changes of adults with asthma who are working full time to those who have drifted away from active working life because of work disability, unemployment or early retirement. The frequency of having changed tasks, work place or occupation, whether the changes had been driven by asthma and furthermore, whether the changes had affected their asthma symptoms were investigated. Methods: In this population-based survey study, all patients with reimbursement rights for asthma aged 20-65 years in the city of Tampere (total population 190,000), Finland (n = 2613) were recruited. The questionnaire was sent in October 2000 and the response rate was 79%. The questionnaire included questions e.g. on changing tasks, work place and occupation, whether these changes were driven by asthma or associated with change of asthma symptoms. The respondents were divided into four groups: working full-time, work disability, unemployed and retired due to age. We applied ANOVA with Dunnet's post-test (variances were not equal between the groups) for a continued variable age and Chi-squared tests for categorical variables. Logistic regression models were built using unemployed vs. full-time work or work disability vs. full-time work as an outcome variable. A p-value of Results: Adults with asthma working full time had more often made changes in their career, but not as often driven by asthma as those with current work disability. The reason for changing work place compared to full-time workers (24.9%) was more often mainly or partly due to asthma among those with work disability (47.9%, p <0.001) and the unemployed (43.3%, p = 0.006). Of those who made career changes because of asthma, a major proportion (over 67%) reported relief in asthma symptoms. Changing tasks (OR 5.8, 95% CI 1.9-18.0, for unemployment vs. full-time work), work place (OR 2.8, 95% CI 1.1-7.0, for work disability vs. full-time work and OR 2.6, 95% CI 1.3-5.4, for unemployment vs. full-time work) or occupation (OR 2.7, 95% CI 1.2-6.0, for unemployment vs. full-time work) mainly because of asthma was associated with an elevated risk for undesirable employment status even after adjusting for age, gender, smoking and professional status. Conclusions: Career changes that were made mainly because of asthma were associated with undesirable employment status in this study. However, asthma symptoms were relieved after career changes especially among those who reported asthma to be the reason for the change. In addition to proper treatment and counselling of asthma patients towards applicable area of work or study, it may be beneficial to support early career changes in maintaining sustainable working careers among adults with asthma.
  • Nortio, Emma; Jasinskaja-Lahti, Inga; Hämäläinen, Mikko Matinpoika; Pakkasvirta, Jussi (2022)
    National identities are an important tool for collective political persuasion and mobilisation among political elites and lay people. Recent research on nationalism has shown that the negotiating of national identities, like any political deliberations and operations, increasingly occur on the Internet. In this study, we contribute to this research by examining the relational construction of Finnish identity online. More specifically, we focus on how the users of the largest discussion forum in Finland constructed Russia as a threat. A massive dataset spanning 12 years enables us to map the recurring patterns and temporal shifts in the discussions. We show that the construction of Russia as a threatening national other was used to both oppose and support Finland's alliance with the West, namely, becoming a member of NATO.
  • Nelskylä, Annika I; Skrifvars, Markus; Ångerman, Susanne; Nurmi, Jouni (2022)
    Background: High oxygen levels may worsen cardiac arrest reperfusion injury. We determined the incidence of hyperoxia during and immediately after successful cardiopulmonary resuscitation and identified factors associated with intra-arrest cerebral oxygenation measured with near-infrared Methods: A prospective observational study of out-of-hospital cardiac arrest patients treated by a physician-staffed helicopter unit. Collected data included intra-arrest brain regional oxygen saturation (rSO2) with NIRS, invasive blood pressures, end-tidal CO2 (etCO2) and arterial blood gas samples. Moderate and severe hyperoxia were defined as arterial oxygen partial pressure (paO2) 20.0-39.9 and 40 kPa, respectively. Intra-arrest factors correlated with the NIRS value, rSO2, were assessed with the Spearman's correlation test. Results: Of 80 recruited patients, 73 (91%) patients had rSO2 recorded during CPR, and 46 had an intra-arrest paO2 analysed. ROSC was achieved in 28 patients, of whom 20 had paO2 analysed. Moderate hyperoxia was seen in one patient during CPR and in four patients (20%, 95% CI 7-42%) after ROSC. None had severe hyperoxia during CPR, and one patient (5%, 95% 0-25%) immediately after ROSC. The rSO2 during CPR was correlated with intra-arrest systolic (r = 0.28, p < 0.001) and diastolic blood pressure (p = 0.32, p < 0.001) but not with paO2 (r = 0.13, p = 0.41), paCO2 (r = 0.18, p = 0.22) or etCO2 (r = 0.008, p = 0.9). Conclusion: Hyperoxia during or immediately after CPR is rare in patients treated by physician-staffed helicopter units. Cerebral oxygenation during CPR appears more dependent, albeit weakly, on hemodynamics than arterial oxygen concentration.
  • Vornanen, Marleena; Aktan-Collan, Katja; Hallowell, Nina; Konttinen, Hanna; Haukkala, Ari (2019)
    Genome-wide sequencing may generate secondary findings (SFs). It is recommended that validated, clinically actionable SFs are reported back to patients/research participants. To explore publics’ perspectives on the best ways to do this, we performed a vignette study among Finnish adults. Our aim was to explore how lay people react to different types of hypothetical genomic SFs. Participants received a hypothetical letter revealing a SF predisposing to a severe but actionable disease - cardiovascular disease (familial hypercholesterolemia, long QT syndrome) or cancer (Lynch syndrome, Li–Fraumeni syndrome). Participants (N=29) wrote down their initial reactions, and discussed (N=23) these in focus groups. Data were analyzed using inductive thematic analysis. Reactions to hypothetical SFs varied according to perceived severity and familiarity of the diseases. SFs for cancer were perceived as more threatening than for cardiovascular diseases, but less distressing than risk for psychiatric or neurological disorders, which participants spontaneously brought up. Illness severity in terms of lived experience, availability of treatment, stigma, and individual’s responsibility to control risk were perceived to vary across these disease types. In addition to clinical validity and utility, SF reporting practices need to take into account potential familiarity and lay illness representations of different diseases. Illness representations may influence willingness to receive SFs, and individuals’ reactions to this information.
  • Ollila, Henriikka; Pihlaja, Riikka; Koskinen, Sanna; Tuulio-Henriksson, Annamari; Salmela, Viljami; Tiainen, Marjaana; Hokkanen, Laura; Hästbacka, Johanna (2022)
    Background: Cognitive impairment has emerged as a common post-acute sequela of coronavirus disease 2019 (COVID-19). We hypothesised that cognitive impairment exists in patients after COVID-19 and that it is most severe in patients admitted to the intensive care unit (ICU). Methods: This prospective controlled cohort study of 213 participants performed at the Helsinki University Hospital and the University of Helsinki, Finland, comprised three groups of patients—ICU-treated (n = 72), ward-treated (n = 49), and home-isolated (n = 44)—with confirmed COVID-19 between March 13 and December 31, 2020, participating in a comprehensive neuropsychological evaluation six months after the acute phase. Our study included a control group with no history of COVID-19 (n = 48). Medical and demographic data were collected from electronic patient records and interviews carried out four months after the acute phase. Questionnaires filled six months after the acute phase provided information about change in cognitive functioning observed by a close informant, as well as the presence of self-reported depressive and post-traumatic symptoms. Results: The groups differed (effect size η2p = 0.065, p = 0.004) in the total cognitive score, calculated from neuropsychological measures in three domains (attention, executive functions, and memory). Both ICU-treated (p = 0.011) and ward-treated patients (p = 0.005) performed worse than home-isolated patients. Among those with more than 12 years of education, ICU-treated patients performed worse in the attention domain than ward-treated patients (p = 0.021) or non-COVID controls (p = 0.045); ICU-treated male patients, in particular, were impaired in executive functions (p = 0.037). Conclusions: ICU-treated COVID-19 patients, compared to patients with less severe acute COVID-19 or non-COVID controls, showed more severe long-term cognitive impairment. Among those with more than 12 years of education, impairment existed particularly in the domains of attention and for men, of executive functions. Trial registration number: ClinicalTrials.gov NCT04864938, retrospectively registered February 9, 2021.
  • Mäki, Kaisa; Nybo, Taina; Hietanen, Marja; Huovinen, Antti; Marinkovic, Ivan; Isokuortti, Harri; Melkas, Susanna (2022)
    Objective: To examine perceived injustice and its associations with self-reported symptoms and return to work at 3months after injury in a prospectively recruited sample of patients with mild traumatic brain injury (mTBI). Design: Observational study. Setting: TBI outpatient unit. Participants: Adult patients aged 18 to 68 years with mTBI (n = 100) or orthopedic injury ([OI]; n = 34). Main Measures: The Injustice Experience Questionnaire (IEQ) and its associations with the Rivermead Post Concussion Questionnaire (RPQ), Beck Depression Inventory-Second Edition (BDI-II), PTSD Checklist-Civilian Version (PCL-C), and Pain Visual Analog Scale (PVAS). Information on injury-related characteristics, compensation seeking and litigation, and return-to-work status was also collected. Results: Median IEQ total score was 3 (range, 0-23) in the mTBI group and 2.5 (range, 0-25) in the OI group. In the mTBI group, IEQ was significantly correlated with RPQ (rs = 0.638, P
  • Marinkovic, Ivan; Isokuortti, Harri; Huovinen, Antti; Trpeska Marinkovic, Daniela; Mäki, Kaisa; Nybo, Taina Tuulikki; Korvenoja, Antti; Raj, Rahul; Vataja, Risto; Melkas, Susanna (2020)
    Abstract: Background: We evaluated the prevalence of psychiatric disorders in mild traumatic brain injury (MTBI) patients and investigated psychiatric comorbidity in relation to subjective symptoms and return to work (RTW). Methods: We recruited 103 MTBI patients (mean age 40.8 years, SD 3.1) prospectively from University Hospital. The patients were followed up for one year. The Rivermead Post-Concussion Symptom Questionnaire (RPQ) and Extended Glasgow Outcome Scale (GOSE) were administered one month after MTBI. Three months after MTBI, any psychiatric disorders were assessed using the Structured Clinical Interview for DSM-IV Axis I Disorders. Results: Psychiatric disorders were diagnosed in 26 patients (25.2%). The most common disorders were previous/current depression. At three months, there was no dierence between patients with psychiatric disorders versus those without them in RTW (95.7% vs. 87.3%, p = 0.260) or at least in part-time work (100% vs. 94.4%, p = 0.245). In Kaplan–Meier analysis, the median time to RTW was 10 days for both groups. The median RPQ score was 13.0 (Interquartile range (IQR) 6.5–19.0) in patients with a psychiatric disorder compared to 8.5 (IQR 2.3–14.0) in those without one (p = 0.021); respectively, the median GOSE was 7.0 (IQR 7.0–8.0) compared to 8.0 (IQR 7.0–8.0, p = 0.003). Conclusions: Approximately every fourth patient with MTBI had a psychiatric disorder. These patients reported more symptoms, and their functional outcome measured with GOSE at one month after MTBI was worse. However, presence of any psychiatric disorder did not aect RTW. Early contact and adequate follow-up are important when supporting the patient’s return to work.
  • Mattila-Holappa, Pauliina; Joensuu, Matti; Ahola, Kirsi; Koskinen, Aki; Tuisku, Katinka; Ervasti, Jenni; Virtanen, Marianna (2016)
    Background: We examined the extent to which psychotherapeutic and work-oriented interventions were included in a medical treatment and rehabilitation plan and whether they predicted future employment among young adults with work disability due to a mental disorder. Methods: Data were obtained from the treatment and rehabilitation plans of 1163 young adults aged 18. 34 years, who in 2008 were granted fixed-term work disability compensation due to a mental disorder and were followed for 5 years. Results: Forty-six percent had no proposal for psychotherapy or a work-oriented intervention in their treatment and rehabilitation plan, 22 % had a plan for only a psychotherapeutic intervention, 23 % had a plan for only a work-oriented intervention, and 10 % had both types of interventions planned. Having a planned psychotherapeutic intervention (HR = 1.35, 95 % CI 1.07-1.69) and of the work-oriented interventions, planned rehabilitative courses and training (HR = 1.34, 95 % CI 1.03-1.70) predicted quicker entry into competitive employment. Having a plan for both a psychotherapeutic and work-oriented intervention was associated with being employed at the end of the follow-up (OR = 1.77, 95 % CI 1.07-2.95). Conclusions: Young adults with a long-term psychiatric work disability episode rarely have a recorded plan for rehabilitation in their treatment and rehabilitation plan although psychotherapeutic interventions and a combination of a psychotherapeutic and work-oriented intervention might help them gain employment.
  • Northern European Returning; Graham, Mackenzie; Hallowell, Nina; Solberg, Berge; Haukkala, Ari; Holliday, Joanne; Kerasidou, Angeliki; Littlejohns, Thomas; Ormondroyd, Elizabeth; Skolbekken, John-Arne; Vornanen, Marleena (2021)
    A rapidly growing proportion of health research uses 'secondary data': data used for purposes other than those for which it was originally collected. Do researchers using secondary data have an obligation to disclose individual research findings to participants? While the importance of this question has been duly recognised in the context of primary research (ie, where data are collected from participants directly), it remains largely unexamined in the context of research using secondary data. In this paper, we critically examine the arguments for a moral obligation to disclose individual research findings in the context of primary research, to determine if they can be applied to secondary research. We conclude that they cannot. We then propose that the nature of the relationship between researchers and participants is what gives rise to particular moral obligations, including the obligation to disclose individual results. We argue that the relationship between researchers and participants in secondary research does not generate an obligation to disclose. However, we also argue that the biobanks or data archives which collect and provide access to secondary data may have such an obligation, depending on the nature of the relationship they establish with participants.
  • Svärd, Anna; Lahti, Jouni; Mänty, Minna; Roos, Eira; Rahkonen, Ossi; Lahelma, Eero; Lallukka, Tea (2020)
    Aims: Obesity and weight change are associated with sickness absence; however, less is known about the diagnoses for sickness absence. We examined the association between stable and changing weight by body mass index groups with sickness absence due to any, musculoskeletal and mental diagnoses among midlife female and male employees. Methods: The Finnish Helsinki Health Study phase 1 survey took place in 2000-2002 (response rate 67%) and phase 2 in 2007 (response rate 83%). Based on self-reported body mass index, we calculated the weight change between phases 1 and 2 (body mass index change > 5%). The data were linked with registers of the Social Insurance Institution of Finland, including information on diagnoses (ICD-10) for sickness absence >9 days. We used a negative binom ial model to examine the association with sickness absence among 3140 women and 755 men during the follow-up (2007-2013). Results are presented as rate ratios. Covariates were age, sociodemographic factors, workload, health behaviors and prior sickness absence. Results: Weight-gain (rate ratio range=1.27-2.29), overweight (rate ratio range=1.77-2.02) and obesity (rate ratio range=2.16-2.29) among women were associated with a higher rate of sickness absence due to musculoskeletal diseases, compared to weight-maintaining normal-weight women. Similarly, obesity among men was associated with sickness absence due to musculoskeletal diseases (rate ratio range=1.55-3.45). Obesity among women (rate ratio range=1.54-1.72) and weight gain among overweight men (rate ratio=3.67; confidence interval=1.72-7.87) were associated with sickness absence due to mental disorders. Conclusions: Obesity and weight gain were associated with a higher rate of sickness absence, especially due to musculoskeletal diseases among women. Preventing obesity and weight gain likely helps prevent sickness absence.
  • Honkonen, N.; Liira, J.; Lamminpaa, A.; Liira, H. (2018)
    Background Work ability meetings (WAMs) are planned discussions between an employee, a manager and an occupational physician (OP) to support work ability and return to work (RTW). During the last decade, WAMs become a popular intervention in Finnish occupational healthcare, although research on their content is lacking. Aims To describe the practice of WAMs in Finland. Methods We sent an internet survey by e-mail to members of the Finnish Society of Occupational Health Physicians in August 2014. We asked them to describe the last WAM they had attended, the employee the meeting concerned, the reason why it was convened, the content of the meeting and the action plan developed. Results A total of 303 of 1304 OPs responded (24%) to the survey. The meetings were most often arranged for employees in manual or clerical work (71%). There were several overlapping reasons for convening a WAM, including a worker's reduced work ability (57%), functional ability (42%) or long-term sickness absence (38%). The meetings consisted of RTW planning, clarification of the situation and a dialogue between the three parties. In half of the cases, the action plans dealt with modifications of work tasks. A third of cases were forwarded to vocational rehabilitation, while permanent disability pension was considered in 6% of cases. Conclusions The focus of WAMs was on workplace adjustments to support workers to remain at work. The WAMs dealt mostly with early interventions for RTW: work modifications, adjustments and vocational rehabilitation.
  • Vornanen, Marleena Emilia; Aktan-Collan, Katja Irmeli; Hallowell, Nina; Konttinen, Hanna Marja; Kääriäinen, Helena; Haukkala, Ari Heikki (2018)
    Lowered costs of genomic sequencing facilitate analyzing large segments of genetic data. Ethical debate has focused on whether and what kind of incidental or secondary findings (SFs) to report, and how to obtain valid informed consent. However, people’s support needs after receiving SFs have received less attention. We explored Finnish adults’ perspectives on reporting genetic SFs. In this qualitative study which included four focus group discussions (N = 23) we used four vignette letters, each reporting a genetic SF predisposing to a different disease: familial hypercholesterolemia, long QT syndrome, Lynch syndrome, and Li-Fraumeni syndrome. Transcribed focus group discussions were analyzed using inductive thematic analysis. Major themes were immediate shock, dealing with worry and heightened risk, fear of being left alone to deal with SFs, disclosing to family, and identified support needs. Despite their willingness to receive SFs, participants were concerned about being left alone to deal with them. Empathetic expert support and timely access to preventive care were seen as essential to coping with shock and worry, and disclosing SFs to family. Discussion around SFs needs to concern not only which findings to report, but also how healthcare systems need to prepare for providing timely access to preventive care and support for individuals and families.