Browsing by Subject "Parents"

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  • Iotova, Violeta; Schalin-Jäntti, Camilla; Bruegmann, Petra; Broesamle, Manuela; De Graaf, Johan; Bratina, Natasa; Tillmann, Vallo; Pereira, Alberto M.; Hiort, Olaf (2021)
    Aim To perform a baseline survey on condition-specific information access among patients/parents/caregivers with rare endocrine disorders (RD) in Europe. Methods Electronic invitation to participate in a survey (19 questions) was sent to 120 patient advocacy groups (PAGs), and further distributed to 32 European countries. Results A total of 1138 respondents from 22 countries (74% women), aged between 1 year (parents) and 70 years, participated. The Netherlands, France, Germany, Italy and France had highest participation rates. All Main Thematic Groups (MTGs) were represented; the adrenal (32%), pituitary (26%) and thyroid (22%) were the most common. The majority of the respondents got information from their endocrinologist (75%), PAGs (37%) and expert reference centre (22%); 95% received information in their mother tongue. Leaflets (70%), infographics (65%), webinars (60%) and Internet films (55%) were preferred ways of learning. Respondents relied mostly on materials by PAGs and alliances (79%), rather than from specific international RD sites (15%). Fifty-six percent used Facebook, and 37% other social media, with a significant age difference (40 years) among non-users, 19% vs. 36%, p <0.0001. Of all, 685 answered questions on informational materials for children-79% wanted materials that can be used by the children themselves. There was significant age difference (40 years) in the willingness to help create new educational materials; 49% vs. 34%, p <0.001. Conclusions Our current patient information access survey provides a sound basis for further planning and execution of educational and teaching activities by Endo-ERN.
  • Kaipio, Johanna; Karisalmi, N.; Hiekkanen, K.; Stenhammar, H.; Lahdenne, P. (IOS PRESS, 2019)
    Studies in Health Technology and Informatics
    Patient experience (PX) is an important evaluation criterion for quality in healthcare. Compared to patient satisfaction, however less research has focused on the development of instruments to measure experiences of patients and their families. In the article, we describe the process of developing a PX questionnaire for the parents of pediatric patients in the context of children's hospital and illustrate the questionnaire items for measuring PX. The phases of the development process included retrospective interviews, description of the themes influencing PX and the metrics for measuring PX, as well as iterative development of three versions of questionnaires including data gathering and factor analysis. The final versions of the surveys suggested for implementation at the hospitals include eight PX statements for the outpatient clinic and five statements for the ward. Compared to satisfaction surveys, the developed surveys emphasize the aspects of parent's attitude towards the illness, support for families, and daily arrangements with a child patient. © 2019 American Psychological Association Inc. All rights reserved.
  • Suominen, Janne; Salminen, Päivi; Usvasalo, Anu; Nokso-Koivisto, Johanna (2018)
    Trakeostomia eli henkitorviavanteen teko on lapsella hengitystieongelmien hoidon äärimuoto. Sen tarve on harkittava tarkasti huomioiden lapsen sairaudet, kokonaistilanne ja mahdollisuus hoitoon ¬yksikössä, jossa hoidosta on tarpeeksi kokemusta. Toimenpiteen yleisimpiä syitä ovat kasvojen rakennepoikkeavuudet, hengitysteiden ahtaumat ja keuhkoputken vaikea pehmeys. Kotiin pyritään järjestämään hoitorinki ympärivuorokautisen hoidon varmistamiseksi.
  • Seppälä, Laura; Nikkola, Eeva (2018)
    • Lapselle sepitetyssä tai aiheutetussa sairaudessa aikuinen pyrkii saamaan lapsen näyttämään todellista sairaammalta ja hankkimaan perusteetta tutkimuksia ja hoitoja. • Sepittämisessä oireet ovat väärin kuvattuja, liioiteltuja tai keksittyjä. • Aiheutetussa tilanteessa lapseen tai hänen näytteisiinsä on konkreettisesti kajottu. • Tällaista kaltoinkohtelua on vaikea tunnistaa. Pahimmillaan se johtaa vammautumiseen tai kuolemaan. • Lapsen auttaminen edellyttää moniammatillista yhteistyötä. Vakavimmat tapaukset ilmoitetaan lasten¬suojelulle, joskus myös poliisille.
  • Alapulli, Heikki; Yli-Urpo, Helena (2018)
    Lähes viidenneksellä lapsista on pitkäaikaissairaus. Monet näistä sairauksista tai niiden hoidot aiheuttavat lisäriskejä suun terveydelle. Suusairauksien hallinta vaatii potilaalta ja perheeltä sitoutumista suun päivittäiseen hoitoon kotona sekä ¬säännöllisiä käyntejä hammaslääkärissä. Nämä luovat pohjan hyvälle suun terveydelle myös aikuisena. Hoitava lääkäri voi parantaa potilaan sitoutumista kertomalla suun terveyden merkityksestä pitkäaikais¬sairaudessa.
  • Karisalmi, Nina; Mäenpää, Katja; Kaipio, Johanna; Lahdenne, Pekka (2020)
    BackgroundBecause the healthcare sector is shifting to a customer-oriented approach, it is important to understand experiences of children as users of healthcare services. So far, studies that measure the influence of medical clowning on patient experiences are scarce. This study aims to measure experiences of children and their parents during day-surgery in hospital setting.MethodsA case-control study was conducted in a large Finnish children's hospital. Seventy children aged 4-17years coming for a minor operative procedure including pre-operative cannula insertion prior to surgery were included. Thirty-eight children were exposed to the medical clowning intervention and 32 children (the reference group) did not receive exposure to medical clowning. A novel digital survey tool was used to measure patient experiences before and after the insertion of a venous cannula needed for anaesthesia. The children were asked about their emotions, anxiety levels, the pain from the cannula insertion and the best and worst things about the hospital. The parents were asked about their emotions, expectations and the fluency of the procedure and the hospital day.ResultsBefore the procedure, 32% or 36% of the children in the intervention group and 44% or 28% of those in the reference group expressed positive or neutral emotions, respectively. After the procedure, 76% or 63% of children in the intervention group or reference group, respectively, expressed positive emotions. The intervention group rated the medical clowns as the best aspect of the hospital day. Both groups reported that the best aspects of the hospital day were related to the nurses and food and the worst were related to waiting and pain. Most commonly the parents felt uncertainty, anxiety or calmness before the procedure and relief afterwards. Their expectations towards the procedure related to its success and the certainty of the diagnosis.ConclusionsThe results show a trend towards more positive emotions in children with exposure to medical clowning. The digital survey tool was suitable for gathering information about the experiences of children and their parents. Information on emotions and expectations of children and parents during a procedure is useful when improving the quality of healthcare services.Trial registrationCurrent Controlled Trials NCT04312217, date of registration 17.03.2020.Retrospectively registered.
  • Silwal, Sanju; Lehti, Venla; Chudal, Roshan; Suominen, Auli; Lien, Lars; Sourander, Andre (2019)
    Objectives: The aim of this study was to investigate the association between parental immigration status and a diagnosis of post-traumatic stress disorder (PTSD) in their offspring. Methods: This nested matched case-control study was based on a Finnish national birth cohort for 1987-2010 and cases were diagnosed with PTSD by 2012 from the Care Register for Health Care. We identified 3639 cases and 14,434 controls individually matched for gender, place and date of birth ( +/- 30 days). Conditional logistic regression analyses were conducted to examine the association between parental immigration status, parents' region of birth and time since paternal immigration, and PTSD after controlling for confounding factors. Results: The likelihood of being diagnosed with PTSD was significantly increased among children with an immigrant father (OR 1.8, 95% CI 1.3 - 2.4) than those with two Finnish parents and one immigrant mother. There was no significant association between having an immigrant mother or two immigrant parents and receiving a diagnosis of PTSD. The likelihood of being diagnosed with PTSD was increased if the children's fathers had migrated less than five years before their birth (OR 1.4, 95% CI 1.03 - 1.9) and if their immigrant fathers had been born in North Africa or the Middle East (OR 2.1, 95% CI 1.4 - 3.3). Limitations: The sample included a heterogeneous migrant group without information on the reason for migration. The cases were identified from hospital diagnosis that may have only included severe cases. Conclusion: The increased likelihood of a diagnosis of PTSD underlines the need for psychosocial services among second-generation immigrants.
  • Martikainen, Pekka; Korhonen, Kaarina; Moustgaard, Heta; Aaltonen, Mikko; Remes, Hanna (2018)
    The effects of substance abuse on other family members are not fully established. We estimate the contribution of parental substance abuse on offspring psychiatric morbidity in late adolescence and early adulthood, with emphasis on the timing and persistency of exposure. We used a nationally representative 20% sample of Finnish families with children born in 1986-1996 (n = 136,604) followed up in 1986-2011. We identified parental substance abuse and offspring psychiatric morbidity from hospital discharge records, death records and medication registers. The effects of parental substance abuse at ages 0-4, 5-9 and 10-14 on psychiatric morbidity after age 15 were estimated using population averaged and sibling fixed effects models; the latter controlling for unobserved factors shared by siblings. Parental substance abuse at ages 0-14 was associated with almost 2-fold increase in offspring psychiatric morbidity (HR = 1.86, 95% CI 1.78-1.95). Adjustment for childhood parental education, income, social class and family type reduced these effects by about 50%, with some further attenuation after adjustment for time-varying offspring characteristics. In the sibling fixed effects models those exposed at 0-4 or 5-9 years had 20% (HR = 1.20, 95% CI 0.90-1.60) and 33% (HR = 1.33, 95% CI 1.01-1.74) excess morbidity respectively. Also in sibling models those with early exposure at ages 0-4 combined with repeated exposure in later childhood had about 80-90% higher psychiatric morbidity as compared to never exposed siblings (e.g. for those exposed throughout childhood HR = 1.81, 95% CI 1.01-3.25). Childhood exposure to parental substance abuse is strongly associated with subsequent psychiatric morbidity. Although these effects are to a large extent due to other characteristics shared within the parental home, repeated exposure to parental substance abuse is independently associated with later psychiatric morbidity.
  • Keltikangas-Järvinen, Liisa (2018)