Outcomes for children who care for a parent with a severe illness or substance abuse

Quantitative studies of children’s caring activities during parental illness have increased in the past 10 years. However, the various outcomes for these children have been investigated less frequently. In the present study, we investigate whether the children have different outcomes when the parent has a severe physical illness, mental illness, or substance abuse and whether any factors are associated with the positive and negative outcomes of the children’s caregiving. This was a cross-sectional, multicenter study. We recruited parents who were out- or inpatients in five public hospitals in Norway as well as their children. The sample included 246 children ages 8–18 and 238 of their parents with a severe physical illness, mental illness, or substance abuse. Ten percent reported negative outcomes at a clinical level of concern, and nearly half of the children reported stress. However, the outcomes were not significantly different across parental illness groups. Positive and negative outcomes were associated with the nature of caring activities (e.g., personal care, financial and practical management, household management), social skills, and perceived external locus of control. Health professionals must provide a more comprehensive and overall assessment of both the parents’ and the children’s needs. To recognize the role taken by the child, an assessment of children’s caring activities and their need for adequate information should be performed. In particular, should the children’s need for follow-up regarding caring activities, respite, and emotional support be assessed to secure their necessary skills and feeling of mastery

“It’s like being stuck on an unsafe and unpredictable rollercoaster” : experiencing substance use problems in a partner

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Bruker, borger...arbeidsleder?: En kvalitativ studie av brukerstyrt personlig assistanse (BPA)

Denne oppgaven handler om brukerstyrt personlig assistanse (BPA). BPA- ordningen har tre samhandlingsaktører: arbeidsleder, assistent og arbeidsgiver. Denne studiens fokus er arbeidslederrollen. Formålet med studien var å belyse ulike aspekt av betydning for å fungere i rollen som arbeidsleder for eget tjenestetilbud, hvor opplæring og oppfølging av arbeidsleder var sentralt. Det fokuseres på hva som kan fremme arbeidslederens mulighet for å fungere i rollen ut ifra samhandlingen med assistenter og arbeidsgiver. Studien hadde et kvalitativt design, og datamaterialet ble innhentet ved kvalitative intervju som ble analysert med inspirasjon fra hermeneutisk fenomenologi. For å belyse problemstillingene fra de ulike samhandlingsaktørenes ståsteder, besto utvalget av åtte arbeidsledere, fire assistenter og fire ansatte i arbeidsgiverorganisasjoner. Studien indikerer at det å fungere i rollen som arbeidsleder avhenger av flere faktorer tilknyttet de tre samhandlingsaktørene arbeidsleder- assistent- arbeidsgiver: Arbeidslederens personlige egenskaper, selvbestemmelse og brukerstyring synes å ha betydning. Arbeidsleder må på sin side kunne beherske oppgavene med å lede assistenter for å ivareta brukerstyring og arbeidsvilkår for assistenter. Skillet mellom formelle roller og vennskap kan være en utfordrende balansegang mellom arbeidsleder og assistentene. Assistentens tillit til arbeidsleder kan svekkes dersom arbeidsleder ikke styrer ordningen, noe som kan bidra til at assistenten i større grad overtar organiseringen av tjenesten, som kan redusere brukerstyringen. Arbeidsgivers kunnskap og holdning om BPA, samt tillit og samarbeid med arbeidsleder synes å påvirke graden av brukerstyring hos arbeidslederen. Opplæring og veiledning synes å ha betydning for å sikre arbeidslederens brukerstyring og ledelse. For å sikre brukerstyring og valgfrihet kan det synes best med individuelt tilpasset opplæring og veiledning. Studien indikerer at behovet for opplæring varierer med arbeidsleders tidligere erfaringer i livet og i arbeid, tro på seg selv og i arbeidslederrollen, samt BPA- ordningens størrelse (antall timer og assistenter). Samtidig indikerer studien at et fast opplæringsprogram kan ha betydning for å sikre generelle sider ved BPA- ordingen. Likemannsperspektivet i opplæringen erfares som mindre viktig for arbeidsledere, RO og kommune enn for Uloba. Det er varierende erfaringer om hvorvidt det er nødvendig at arbeidsleder står for opplæringen av assistenter selv, med hensyn til å sikre brukerstyring. Studien synliggjør flere spørsmål som egner seg for videre diskusjon, særlig hvorvidt man bør gå mot en todeling av ordningen eller fortsette innenfor dagens rammer. Det er blant annet spørsmål om BPA bør være en velferdstjeneste med krav om innsyn fra forvaltningen, eller om privatisering er svaret på økt selvbestemmelse og valgfrihet hos brukerne. Det er også spørsmål om det skal stilles krav til egnethet hos personer som skal være arbeidsledere, og i så fall: hvilke? Denne studien trekker opp spørsmål knyttet til arbeidslederrollens ansvar med å ivareta egen selvbestemmelse samtidig med assistentenes interesser, hvilket kan ha betydning for hvilke arbeidsgivere som vinner frem i anbud eller ved brukervalg. Generell eller individuelt tilpasset opplæring gir også ulike implikasjoner. Denne studien løfter frem noen erfaringer som kan brukes dersom BPA- ordningen skal vurderes og rettighetsfestes med nye rammevilkår. Videre viser studien at det er behov for evalueringer av brukertilfredshet, kvalitetssikring av tjenestetilbudet samt felles rammer for assistentopplæring. Arbeidslederens og assistentenes vilkår innenfor de ulike arbeidsgivermodeller bør også evalueres videre. Kvalitative studier som denne kan ha overføringsverdi, men det er behov for kvantitative studier som i tillegg kan gi økt generaliserbarhet dersom BPA- ordningen skal endres. Her bør dessuten kjønnsperspektivet inngå, samt fokus på inkludering av arbeidsledere med ulike størrelser av BPA- ordninger. Nye studier kan belyse betydningen av selvbestemmelse og samarbeid og behov for opplæring mellom assistenter og arbeidsledere i større og mindre BPA- ordninger. Denne studien kan brukes som utgangspunkt for evalueringsforskning av velferdstjenester hvor brukerstyring er sentral, samt i studier av lederskap

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

A Vicious Circle of Hope and Despair: Stigma Experienced by Relatives of Persons with Severe Mental Illness

Not only people suffering from severe mental illness (SMI) but also their family members experience stigma. Relatives are met with negative attitudes from healthcare professionals, which adds to the problem. This Swedish study employed a qualitative inductive explorative design in the analysis of written free-text responses from 65 persons who completed a questionnaire for relatives of persons with SMI. The overarching theme, “A vicious circle of hope and despair”, was elaborated by four categories which formed a vicious circle: “Wanting openness, understanding and acknowledgement”; “Facing a lack of understanding from others”; “Seeking understanding from mental healthcare professionals but experiencing the opposite”; and “Keeping family experiences private.” If this vicious circle of family stigma is to be broken, measures are needed for both relatives and health care professionals.publishedVersio

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

BackgroundThe 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.AimsThe 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.MethodsThe 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.ResultsFamily 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.ConclusionsThe 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

Predicting psychological distress of informal carers of individuals with major depression or bipolar disorder

Caring for someone with a mental illness is associated with high levels of burden and psychological distress. Understanding these factors could be important to prevent the development of physical and mental health problems in carers. The purpose of the present study was to determine the contribution of coping styles and social support in predicting the psychological distress reported by informal carers (IC) of individuals with major depression or bipolar disorder. IC (n = 72) of adults with a diagnosed depressive illness were recruited from mental health organizations within the community setting. Carers completed the General Health Questionnaire, Brief COPE, and Social Support Questionnaire. Multiple linear regression analysis revealed that 63% of the variance in psychological distress could be accounted for by adaptive and maladaptive coping styles and perceived quantity and satisfaction with social support. Satisfaction with social support (b = 0.508, P < 0.001) and maladaptive coping (b = 0.369; P < 0.001) were significant predictors of psychological distress. These findings suggest that interventions should consider coping styles, specifically the interaction between maladaptive behaviours and enhancement of quality of support, to assist carers to manage psychological distress, especially earlier in the caring role

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

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

IntroductionThis 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.MethodsThree 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.ResultFindings 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”.ConclusionsThe 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

“The most important thing is that those closest to you, understand you”: a nested qualitative study of persons with psychotic disorders’ experiences with family involvement

Introduction: Family interventions constitute effective treatment for persons with psychotic disorders. However, the active ingredients and beneficial processes of these interventions are insufficiently examined, and qualitative explorations of patients` experiences are lacking. This study was nested in a cluster randomised trial that implemented national guidelines on family involvement in Norwegian community mental health centres, including family psychoeducation and basic family involvement and support. The aim of this sub-study was to explore how patients with psychotic disorders experience systematic family involvement, and its significance. Methods: We conducted semi-structured, individual interviews with 13 persons with a psychotic disorder after systematic family involvement. The participants were recruited through purposive sampling. Qualitative content analysis guided the analysis. Results: Participants reported overall positive experiences with systematic family involvement. It was significant that the relatives increasingly understood more about psychosis and their situation, while they themselves also gained more insight into the relatives` situation. The participants emphasised the need to enable both patients and relatives to safely share experiences in a containing space, led by professionals. Shared understanding and awareness of each other’s situation further improved communication, coping with the illness, reduced stress, and stimulated a more caring family environment. The therapist seemed crucial to facilitate these beneficial communication processes, and also to provide continuous support to the relatives. Reported challenges included that the participants felt vulnerable in the initial phase, a need for tailored approaches, and too late start-up. Conclusion: Findings from this study suggest that persons with psychotic disorders may benefit greatly from participating in systematic family involvement. This study also gives new insight into possible mediators of positive outcomes both for the patients and the relatives. Systematic family involvement should be implemented a standard approach in the early phase of the disease, using a step-wise and tailored process.publishedVersio