Carer involvement in the assessment of personal recovery: A naturalistic study of assertive community treatment in Norway

Background: The user and carer movements have come a long way in becoming embedded in mainstream mental health services for individuals with serious mental illness. However, implementing recovery-oriented practice continues to be plagued by an individualistic clinical focus. The carers do not feel integrated despite policies and best intentions. The implementation of Assertive Community Treatment (ACT) provided an opportunity to involve the carers and compare their assessment of personal recovery with the users. Aims: The aims of this study were to examine (i) how family carers and users differed in their assessment of personal recovery, (ii) whether familial and personal relationships influenced how carers assess personal recovery of users, and (iii) if the experience of family carers with the ACT team was associated with personal recovery. Methods: The naturalistic, explorative study recruited 69 users and 36 family carers from 12 Norwegian ACT teams. The users and carers assessed the user’s personal recovery. Family carers also reported their experience and satisfaction with the ACT teams. Analyses included independent and paired sample T-tests and correlation analysis. Results: Family carers were significantly more conservative than the users’ assessment of the intrapsychic and interpersonal subscales of personal recovery. The pattern held true whether the family carers were matched to the users or part of the total sample. Lastly, there was a significant negative correlation between the family carer’s experience of cooperation with the ACT team and their assessment of the user’s intrapersonal process of recovery. Conclusions: The results of our study were consistent with previous research on carer involvement in MHS. However, it is the first study that engaged carers and assessed personal recovery of the users of ACT services. Discrepancy between carers and users is the rule. Clinicians are encouraged to embrace the discrepancy and diversity carers bring and learn the methodology of multi- informant assessments. There also is a need to address, update, and integrate the personal, familial, and relational aspects of recovery. Modification of recovery measures such as QPR and their creative use with carers has the potential to generate valuable third-party information and to involve them meaningfully in mental health services

Patients with severe mental illness and the ethical challenges related to confidentiality during family involvement: a scoping review

This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.Background: Despite evidence on the significant potential value of family involvement during the treatment of patients with severe mental illness, research has shown that family involvement is largely underused. The duty of confidentiality is reported to be a key barrier to family involvement. To develop more insight into this barrier, this scoping review focuses on the following question: What are the reported ethical challenges related to confidentiality when involving family in the treatment of patients with severe mental illness? Methods: A systematic search into primary studies was conducted using the following databases: Medline (Ovid), PsycINFO (Ovid), CINAHL (EBSCO), and Web of Science core collection (Clarivate). The PICO (Population, Intervention, Comparison, Outcome) scheme and qualitative content analysis were used to make the ethical challenges more explicit. Results: Twelve studies—both qualitative and quantitative—were included. We identified the following main categories of ethical challenges: (1) the best interest of family members vs. confidentiality, (2) the patient’s best interest vs. the right to confidentiality, (3) patient trust and alliance as a reason not to involve the relatives or not to share information, and (4) using confidentiality as a smokescreen. We also identified several subcategories and illustrative and concrete examples of ethical challenges. Conclusions: Through a systematic examination, we discovered various types of ethical challenges related to confidentiality when involving the family in the treatment of patients with severe mental illness. However, research on these ethical challenges and the constituents of these challenges remains limited and often implicit. An ethical analysis will create knowledge which may facilitate a more balanced and nuanced approach to respecting the principle of confidentiality while also considering other moral principles. The duty of confidentiality does not always have to be a major barrier to family involvement; this insight and using this ethical analysis in the training of healthcare professionals may benefit the patient, the family, and the services.publishedVersio

‘Not at all what I had expected’: Discontinuing treatment with extended-release naltrexone (XR-NTX): A qualitative study

Background: Extended-release naltrexone (XR-NTX), an opioid antagonist, has demonstrated equal treatment outcomes, in terms of safety, opioid use, and retention, to the recommended OMT medication buprenorphine. However, premature discontinuation of XR-NTX treatment is still common and poorly understood. Research on patient experiences of XR-NTX treatment is limited. We sought to explore participants' experiences with discontinuation of treatment with XR-NTX, particularly motivation for XR-NTX, experiences of initiation and treatment, and rationale for leaving treatment. Methods: We conducted qualitative, semi-structured interviews with participants from a clinical trial of XR-NTX. The study participants (N = 13) included seven women and six men with opioid dependence, who had received a minimum of one and maximum of four injections of XR-NTX. The study team analyzed transcribed interviews, employing thematic analysis with a critical realist approach. Findings: The research team identified three themes, and we present them as a chronological narrative: theme 1: Entering treatment – I thought I knew what I was going into; theme 2: Life with XR-NTX – I had something in me that I didn't want; and theme 3: Leaving treatment – I want to go somewhere in life. Patients' unfulfilled expectations of how XR-NTX would lead to a better life were central to decisions about discontinuation, including unexpected physical, emotional, or mental reactions as well as a lack of expected effects, notably some described an opioid effect from buprenorphine. A few participants ended treatment because they had reached their treatment goal, but most expressed disappointment about not achieving this goal. Some also expressed renewed acceptance of OMT. The participants' motivation for abstinence from illegal substances generally remained. Conclusion: Our findings emphasize that a dynamic understanding of discontinuation of treatment is necessary to achieve a long-term approach to recovery: the field should understand discontinuation as a feature of typical treatment trajectories, and discontinuation can be followed by re-initiation of treatment.‘Not at all what I had expected’: Discontinuing treatment with extended-release naltrexone (XR-NTX): A qualitative studypublishedVersionPaid open acces

Pårørende til personer med alvorlig psykisk lidelse : Deres erfaringer og støtte fra sykepleiere

Aim: The overall aim of this thesis was to illuminate experiences of relatives of persons with severe mental illness, and their need for support from formal care. Furthermore, to illuminate nursing support of relatives of persons with severe mental illness. Methods: A mixed methods design was used. In study I, data was collected with a questionnaire responded by 226 relatives and analysed with statistics. In study II, data was gathered with interviews with a strategic sample of 18 relatives, analysed with phenomenography. Study III gathered data from 216 relatives using open-ended questions in the questionnaire (I), analysed with qualitative content analysis. In study IV, data was collected by means of focus-group interviews with 4 groups of nurses, working in mental healthcare and analysed with phenomenography. Main findings: The relatives experienced that their lives were intertwined with the life of their severely mentally ill next of kin. The relatives experienced burden and a poor health, and there were associations between burden and health (I). The relatives had to balance between multiple concerns and make choices on behalf of others and themselves, constantly struggling between opposing feelings and between reflections (II). Relatives’ encounters with mental health personnel were mainly negative, although some had positive experiences. They strived for involvement in mental healthcare for the sake of their severely mentally ill next of kin, and wanted inclusion and support for their own sake, but mostly felt left alone with straining but inescapable responsibilities (III). The nurses conceived that their responsibility was first and foremost the patient and to develop an alliance with him or her. The nurses often felt they had to exclude relatives, but were sometimes able to support them (IV). Conclusions: Relatives’ lives are intertwined with the life of their severely mentally ill next of kin. Relatives’ overall demanding life situation means that the mental health services must involve relatives for the sake of the severely mentally ill person but also include them for their own sake. They need practical and emotional support. Guidelines must be designed to address relatives’ needs, and support must be adapted to the individual relative.Hensikt: Avhandlingens overordnete hensikt var å belyse erfaringer med å være pårørende til personer med alvorlig psykisk lidelse, og deres behov for støtte fra helsevesenet. Videre å belyse støtte fra sykepleiere til pårørende til personer med alvorlig psykisk lidelse. Metode: Mixed methods design ble benyttet. I studie I ble data samlet med spørreskjema besvart av 226 pårørende, og analysert med statistikk. I studie II ble data samlet ved hjelp av intervju med et strategisk utvalg av 18 pårørende, analysert med fenomenografi. I studie III ble data samlet gjennom åpne spørsmål i et spørreskjema (I), besvart av 216 pårørende og analysert med kvalitativ innholdsanalyse. I studie IV ble data samlet ved hjelp av fokusgruppeintervju med 4 grupper sykepleiere fra psykisk helsevern, analysert med fenomenografi. Hovedfunn: Pårørende opplevde at deres liv var sammenvevd med livet til den som hadde en alvorlig psykisk lidelse. De pårørende opplevde byrde og dårlig helse, og det var sammenheng mellom byrde og helse (I). De pårørende måtte balansere en rekke hensyn, gjøre valg på vegne av andre og seg selv, og samtidig kjempe med motstridende følelser og motstridende tanker (II). Pårørendes erfaringer med møter med helsepersonell i psykisk helsevern var hovedsakelig negative, men noen hadde positive opplevelser. De strevde for å bli involvert i behandlingen for familiemedlemmet med den alvorlige psykiske lidelsen sin del, de ønsket å bli inkludert og motta støtte for egen del, men følte seg overlatt med strevsomt ansvar som de ikke kunne unnslippe (III). Sykepleierne anså at deres ansvar først og fremst var overfor pasienten, og å skape en allianse med vedkommende. Sykepleierne opplevde ofte at de måtte ekskludere pårørende, men var noen ganger i stand til å støtte dem (IV). Konklusjoner: Pårørendes liv er sammenvevd med livet til den som har en alvorlig psykisk lidelse. Pårørendes krevende livssituasjon innebærer at psykisk helsevern må involvere dem for den som har den alvorlige psykiske lidelsen, samt inkludere pårørende for deres egen del. De har behov for praktisk og emosjonell støtte. Retningslinjer må på plass for å ivareta pårørendes behov, og støtten må tilpasses den enkelte pårørend

Experiences of clinicians and managers in the implementation of a family focused model in child and adult psychiatry

Introduction: This paper describes the process of implementing a family focused model, The Family Model, in child and adolescent and adult mental health services in Sweden. Additionally, it describes a service development project carried out in both services within a defined geographical area of Region Stockholm. The Family Model is a communication tool designed to assist clinicians in both services to have family focused conversations with their patients and relatives. Internationally, the needs of individuals experiencing mental health challenges (parents, children and young people) and their close relatives are now well recognized, but barriers to family focused practice nevertheless persist. The aim of this study was to better understand clinicians` experiences in implementing The Family Model in both services.Methods: Three preplanned focus group interviews were carried out with 14 clinicians and managers across both services and the data were analyzed in accordance with methods of Naturalistic inquiry.Result: Findings suggest that The Family Model has utility in both services. The Naturalistic inquiry analyses revealed three main themes: individual, relational and organizational aspects with a total of 10 sub-themes of how the models influence the participants. Furthermore, analyses on a meta understanding level explored that participants underwent a developmental journey in learning about and using The Family Model in practice which was expressed through three themes: “Useful for burdened families”, “Influencing prevention”, and “To integrate this would be fantastic”.Conclusions: The Family Model, when adapted for the Swedish context, is a useful tool for assisting experienced clinicians to engage in family focused practice in both child and adolescent and adult mental health services. The Family Model highlights different aspects in everyday clinical services that were of special interest for clinicians, families, and the system. Future research could explore families’ perspectives of the utility of the model

Impact of Impulsivity, Hyperactivity, and Inattention on Discontinuation Rate among Opioid-Dependent Patients Treated with Extended-Release Naltrexone

Previous studies have indicated elevated levels of impulsivity, hyperactivity, and inattention (IHI) among opioid-dependent patients seeking outpatient treatment with extended-release naltrexone (XR-NTX). This led us to hypothesize that IHI may be associated with a higher discontinuation rate for XR-NTX treatment. In a group of 162 patients with opioid dependence, discontinuation prior to the full 24 weeks of the study period (six injections and attending the study visit at 24 weeks) occurred in 49% of the patients, primarily in the early stage of treatment. IHI above the clinical cut-off on the adult ADHD self-report scale (ASRS) was not associated with a risk of premature discontinuation. This finding was not altered when controlling for socio-demographics, substance, use and mental health severity. Conclusively, high levels of IHI per se is not contradictive for XR-NTX treatment in regard to concern for premature discontinuation

Impact of Impulsivity, Hyperactivity, and Inattention on Discontinuation Rate among Opioid-Dependent Patients Treated with Extended-Release Naltrexone

Previous studies have indicated elevated levels of impulsivity, hyperactivity, and inattention (IHI) among opioid-dependent patients seeking outpatient treatment with extended-release naltrexone (XR-NTX). This led us to hypothesize that IHI may be associated with a higher discontinuation rate for XR-NTX treatment. In a group of 162 patients with opioid dependence, discontinuation prior to the full 24 weeks of the study period (six injections and attending the study visit at 24 weeks) occurred in 49% of the patients, primarily in the early stage of treatment. IHI above the clinical cut-off on the adult ADHD self-report scale (ASRS) was not associated with a risk of premature discontinuation. This finding was not altered when controlling for socio-demographics, substance, use and mental health severity. Conclusively, high levels of IHI per se is not contradictive for XR-NTX treatment in regard to concern for premature discontinuation

Norwegian health personnel’s compliance with new legislation on children of ill parents: an exploratory cross-sectional multicentre study

Background: In 2010 the Norwegian Parliament introduced amendments to the Health Personnel Act requiring all health personnel to inform and offer help to their patients’ children and families. We evaluated whether health personnel adhered to their obligations outlined in the Act and investigated whether family and health services characteristics were associated with the degree of compliance with the legislation. Our study was part of a larger Norwegian multi-site study conducted in five health trusts across Norway, assessing the situation for families living with parental illness. Method: A cross-sectional study using quantitative data obtained from 518 patients 246 children and 278 health personnel was performed. All informants completed a questionnaire, including an instrument corresponding to the obligations in the legislation. Descriptive analyses, factor analysis and logistic regression analysis were used. Results: The legislation was only partially implemented in the clinics of the health trusts. Compared to estimates prior to the introduction of the new legislation, the situation had improved somewhat, but much work remains to be done to fulfil the obligations decreed by law. The more time-consuming the obligations were, the less often they were met. The substance abuse and mental health services followed up on their obligations to a greater extent than did the physical health services. Conversely, children of physically ill parents were better informed by their families than were children of parents with mental health and substance abuse disorders. When asked the same questions, reports from health personnel were more positive compared to those of children and patients regarding the legislation’s fulfillment. Conclusion: Data suggest that there has been a change in the support offered to children of ill parents. Additional work is required, however, for the Health Personnel Act to function as fully intended