Personal Liberty in Psychiatric Care - Towards Service User Involvement

This study explores personal liberty in psychiatric care from a service user involvement perspective. The data were collected in four phases during the period 2000-2006 in psychiatric settings in Finland. Firstly, patient satisfaction and factors associated with user involvement were studied (n = 313). Secondly, patients’ experiences of deprivation of their liberty were explored (n = 51). Thirdly, an overview on patients’ options for lodging complaints was conducted, and all complaints (n = 4645) lodged in Finland from 2000 to 2004 were examined. Fourthly, the effects of different patient education methods on inpatients’ experiences of deprivation of liberty were tested (n = 311). It emerged that patients were quite satisfied, but reported dissatisfaction in restrictions, compulsory care and information dissemination. Patients experienced restrictions on leaving the ward and on communication, confiscation of property and coercive measures as deprivation of liberty. Patients’ experienced these interventions to be negative. In Finland, the patient complaint process is complicated and not easily accessible. In general, patient complaints increased considerably in Finland during the study period. In psychiatric care the number of complaints was quite stable and complaints led more seldom to consequences. An Internet-based patient education system was equivalent with traditional education and treatment as usual in supporting personal liberty during hospital care. This dissertation provides new information about the realization of patients' rights in psychiatric care. In order to improve patients' involvement, systematic methods to increase personal liberty during care need to be developed, the procedures for patients lodging complaints should be simplified, and patients' access to information needs to be ensured using multiple methods.Siirretty Doriast

Connectivity to computers and the Internet among patients with schizophrenia spectrum disorders : a cross-sectional study

Purpose: Information and communication technologies have been developed for a variety of health care applications and user groups in the field of health care. This study examined the connectivity to computers and the Internet among patients with schizophrenia spectrum disorders (SSDs). Patients and methods: A cross-sectional survey design was used to study 311 adults with SSDs from the inpatient units of two psychiatric hospitals in Finland. The data collection lasted for 20 months and was done through patients' medical records and a self-reported, structured questionnaire. Data analysis included descriptive statistics. Results: In total, 297 patients were included in this study (response rate =96%). More than half of them (n=156; 55%) had a computer and less than half of them (n=127; 44%) had the Internet at home. Of those who generally had access to computers and the Internet, more than one-fourth (n=85; 29%) used computers daily, and > 30% (n=96; 33%) never accessed the Internet. In total, approximately one-fourth of them (n=134; 25%) learned to use computers, and less than one-third of them (n=143; 31%) were known to use the Internet by themselves. Older people (aged 45-65 years) and those with less years of education (primary school) tended not to use the computers and the Internet at all (P <0.001), and younger people and those with higher education were associated with more active use. Conclusion: Patients had quite good access to use computers and the Internet, and they mainly used the Internet to seek information. Social, occupational, and psychological functioning (which were evaluated with Global Assessment of Functioning) were not associated with access to and frequency of computer and the Internet use. The results support the use of computers and the Internet as part of clinical work in mental health care.Peer reviewe

Novel germline variant in the histone demethylase and transcription regulator KDM4C induces a multi-cancer phenotype

Background Genes involved in epigenetic regulation are central for chromatin structure and gene expression. Specific mutations in these might promote carcinogenesis in several tissue types. Methods We used exome, whole-genome and Sanger sequencing to detect rare variants shared by seven affected individuals in a striking early-onset multi-cancer family. The only variant that segregated with malignancy resided in a histone demethylase KDM4C. Consequently, we went on to study the epigenetic landscape of the mutation carriers with ATAC, ChIP (chromatin immunoprecipitation) and RNA-sequencing from lymphoblastoid cell lines to identify possible pathogenic effects. Results A novel variant in KDM4C, encoding a H3K9me3 histone demethylase and transcription regulator, was found to segregate with malignancy in the family. Based on Roadmap Epigenomics Project data, differentially accessible chromatin regions between the variant carriers and controls enrich to normally H3K9me3-marked chromatin. We could not detect a difference in global H3K9 trimethylation levels. However, carriers of the variant seemed to have more trimethylated H3K9 at transcription start sites. Pathway analyses of ChIP-seq and differential gene expression data suggested that genes regulated through KDM4C interaction partner EZH2 and its interaction partner PLZF are aberrantly expressed in mutation carriers. Conclusions The apparent dysregulation of H3K9 trimethylation and KDM4C-associated genes in lymphoblastoid cells supports the hypothesis that the KDM4C variant is causative of the multi-cancer susceptibility in the family. As the variant is ultrarare, located in the conserved catalytic JmjC domain and predicted pathogenic by the majority of available in silico tools, further studies on the role of KDM4C in cancer predisposition are warranted.Peer reviewe

Next-generation sequencing in a large pedigree segregating visceral artery aneurysms suggests potential role of COL4A1/COL4A2 in disease etiology

Background Visceral artery aneurysms (VAAs) can be fatal if ruptured. Although a relatively rare incident, it holds a contemporary mortality rate of approximately 12%. VAAs have multiple possible causes, one of which is genetic predisposition. Here, we present a striking family with seven individuals affected by VAAs, and one individual affected by a visceral artery pseudoaneurysm. Methods We exome sequenced the affected family members and the parents of the proband to find a possible underlying genetic defect. As exome sequencing did not reveal any feasible protein-coding variants, we combined whole-genome sequencing of two individuals with linkage analysis to find a plausible non-coding culprit variant. Variants were ranked by the deep learning framework DeepSEA. Results Two of seven top-ranking variants, NC_000013.11:g.108154659C>T and NC_000013.11:g.110409638C>T, were found in all VAA-affected individuals, but not in the individual affected by the pseudoaneurysm. The second variant is in a candidate cis-regulatory element in the fourth intron of COL4A2, proximal to COL4A1. Conclusions As type IV collagens are essential for the stability and integrity of the vascular basement membrane and involved in vascular disease, we conclude that COL4A1 and COL4A2 are strong candidates for VAA susceptibility genes.Peer reviewe

Patient participation in pro re nata medication in forensic psychiatric care: A nursing document analysis

Accessible summaryWhat is known on the subjectAs-needed medication is commonly used for psychiatric inpatients' acute psychiatric and physical symptoms. Both patients and staff can initiate such medication.Earlier studies have focused on what and how as-needed medication has been used for psychiatric reasons. Little is known about how patients participate in planning, administration and evaluation of as-needed medication and its alternatives. Nursing documentation provides an insight into these practices.What this paper adds to existing knowledgeLong-term inpatients have an active role in initiating as-needed medication. However, patients and staff may have divergent opinions on the need for medication.Alternatives to medication are mostly proposed by staff, and the feedback on as-needed medication events is usually provided from nurses' point of view.What are the implications for practicePatients' views on decision-making and evaluation should be noticed and documented more.Patient participation can be promoted by planning as-needed medication and its alternatives beforehand.Introduction Pro re nata (PRN) medication is unscheduled and used for acute physical and psychiatric symptoms. Previous studies have focused on the what and how of psychotropic PRN administration. Initiators of PRN events and occasions in which PRN was denied have rarely been studied. Thus, knowledge of patient participation in PRN is fragmented.Aim We aimed to describe and explain long-term psychiatric inpatients' participation in relation to planning and initiation of, as well as decisions and feedback on their PRN medication treatment.Methods We retrieved data from patients' (n = 67) nursing documentation in a Finnish forensic psychiatric hospital in 2018. Data were analysed using statistical methods.Results All patients were prescribed PRN, and they initiated half of the 8,626 PRN events identified, in a 1-year period. Non-pharmacological strategies were rarely (6%) documented, and most of them were initiated by staff (76%). Feedback on PRN was usually from a nurse's viewpoint (71%). Nurses' feedback was positive (80%) more often than patients' (50%).Discussion Patient participation needs to be recognized throughout the PRN process. Future research could continue to explore patient participation in planning and evaluating their PRN medication.Implications for practice Patients participate in PRN by requesting medication. Their participation can be developed by supporting patients to communicate their choice of non-pharmacological methods, take the initiative for medication when needed and disclose their viewpoint on the effects of PRN