Family involvement during severe mental health problems

The duty of confidentiality during family involvement: ethical challenges and possible solutions in the treatment of persons with psychotic disorders. Article in BMC Psychiatry. Published 20.12.22

Barriers and facilitators when implementing family involvement for persons with psychotic disorders in community mental health centres – a nested qualitative study. Article in BMC Health Services Research. Published 13.09.22

Family involvement practices for persons with psychotic disorders in community mental health centres – a cross-sectional fidelity-based study. Article in BMC Psychiatry. Published 02.06.21

Implementation of guidelines on family involvement for persons with psychotic disorders in community mental health centres (IFIP): protocol for a cluster randomised controlled trial. Article in BMC Health Services Research. Published 09.10.20

• Hem, Marit Helene; Molewijk, Albert Christiaan; Weimand, Bente Margrethe & Pedersen, Reidar (2023). Patients with severe mental illness and the ethical challenges related to confidentiality during family involvement: a scoping review. Frontiers in Public Health. ISSN 2296-2565. 10, p. 1–14. doi: 10.3389/fpubh.2022.960815. Full text in Research Archive Show summary

  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.

• Hestmark, Lars; Romøren, Maria; Hansson, Kristiane Myckland; Heiervang, Kristin Sverdvik & Pedersen, Reidar (2023). Clinicians’ perceptions of family involvement in the treatment of persons with psychotic disorders: a nested qualitative study. Frontiers in Psychiatry. ISSN 1664-0640. 14, p. 1–12. doi: 10.3389/fpsyt.2023.1175557. Full text in Research Archive Show summary

  Background: Family involvement in mental health care ranges from basic practices to complex interventions such as Family psychoeducation, the latter being a well-documented treatment for psychotic disorders. The aim of this study was to explore clinicians’ perceptions of the benefits and disadvantages of family involvement, including possible mediating factors and processes. Methods: Nested in a randomised trial, which purpose was to implement Basic family involvement and support and Family psychoeducation in Norwegian community mental health centres during 2019–2020, this qualitative study is based on eight focus groups with implementation teams and five focus groups with ordinary clinicians. Using a purposive sampling strategy and semi-structured interview guides, focus groups were audio-recorded, transcribed verbatim, and analysed with reflexive thematic analysis. Results: Four main themes were identified as perceived benefits: (1) Family psychoeducation—a concrete framework, (2) Reducing conflict and stress, (3) A triadic understanding, and (4) Being on the same team. Themes 2–4 formed an interconnected triad of mutually reinforcing elements and were further linked to three important clinician-facilitated sub-themes: a space for relatives’ experiences, emotions and needs; a space for patients and relatives to discuss sensitive topics and an open line of communication between clinician and relative. Although far less frequent, three main themes were identified as perceived disadvantages or challenges: (1) Family psychoeducation—occasional poor model fit or difficulties following the framework, (2) Getting more involved than usual, and (3) Relatives as a potentially negative influence—important nonetheless Conclusions: The findings contribute to the understanding of the beneficial processes and outcomes of family involvement, as well as the critical role of the clinician in achieving these and possible challenges. They could also be used to inform future quantitative research on mediating factors and implementation efforts.

• Hansson, Kristiane Myckland; Romøren, Maria; Hestmark, Lars; Heiervang, Kristin Sverdvik; Weimand, Bente Margrethe & Norheim, Irene [Show all 7 contributors for this article] (2023). “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. Frontiers in Psychiatry. ISSN 1664-0640. 14. doi: 10.3389/fpsyt.2023.1138394. Full text in Research Archive Show summary

  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.

• Hestmark, Lars; Romøren, Maria; Heiervang, Kristin Sverdvik; Hansson, Kristiane Myckland; Ruud, Torleif & Saltyte Benth, Jurate [Show all 9 contributors for this article] (2023). Implementation of Guidelines on Family Involvement for Persons with Psychotic Disorders (IFIP): A Cluster Randomised Controlled Trial. Administration and Policy in Mental Health and Mental Health Services Research. ISSN 0894-587X. 50, p. 520–533. doi: 10.1007/s10488-023-01255-0. Full text in Research Archive Show summary

  Family involvement is part of the evidence-based treatment for persons with psychotic disorders, yet is under-implemented despite guideline recommendations. This study assessed whether an implementation support programme increased the adherence to guidelines on family involvement, compared to guideline/manual only. In a cluster randomised design, community mental health centre units in South-East Norway went through stratified allocation to the experimental (n = 7) or control (n = 7) arm. Experimental clusters received an implementation support programme including clinical training and supervision, appointing a family coordinator and an implementation team, a toolkit, and fidelity measurements at baseline, 12, 18, and 24 months with on-site feedback and supervision. Control clusters received no such support and had fidelity measurements at baseline and 24 months without feedback. During fidelity measurements, adherence to the guidelines was measured with the basic family involvement and support scale, the general organizational index, and the family psychoeducation fidelity scale, the latter being the primary outcome. The scales consist of 12–14 items rated from 1 to 5. Data was analysed with an independent samples t-test, linear mixed models, and a tobit regression model. At 24 months, the mean scores were 4.00 or higher on all scales in the experimental arm, and the increase in adherence to the guidelines was significantly greater than in the control arm with p-values < 0.001. Large-scale implementation of guidelines on family involvement for persons with psychotic disorders in community mental health centres may be accomplished, with substantial implementation support.

• Hansson, Kristiane Myckland; Romøren, Maria; Weimand, Bente Margrethe; Heiervang, Kristin Sverdvik; Hestmark, Lars & Landeweer, Elleke [Show all 7 contributors for this article] (2022). The duty of confidentiality during family involvement: ethical challenges and possible solutions in the treatment of persons with psychotic disorders. BMC Psychiatry. ISSN 1471-244X. 22(1), p. 1–13. doi: 10.1186/s12888-022-04461-6. Full text in Research Archive Show summary

  Background: Family involvement during severe mental illness is still poorly implemented, contrary to evidence-based recommendations. Confidentiality issues are among the most prominent barriers, with mental health professionals facing complex ethical, legal, and practical challenges. However, research focusing on this barrier is very sparse. Nested within a cluster-randomised trial to implement guidelines on family involvement for persons with psychotic disorders in community mental health centres, the aim of this sub-study was to explore ethical challenges related to the duty of confidentiality as experienced by mental health professionals, and to explore key measures that might contribute to improving the handling of such challenges. Methods: In total 75 participants participated in 21 semi-structured focus groups, including implementation team members at the initial and late phase of the intervention period and clinicians who were not on the implementation teams, at late phase of implementation. We used purposive sampling and manifest content analysis to explore participants’ experiences and change processes. Results: Ethical challenges related to the duty of confidentiality included 1) Uncertainty in how to apply the legislation, 2) Patient autonomy versus a less strict interpretation of the duty of confidentiality, 3) Patient alliance and beneficence versus a less strict interpretation of the duty of confidentiality, 4) How to deal with uncertainty regarding what relatives know about the patients’ illness, and 5) Relatives’ interests versus the duty of confidentiality. Measures to facilitate better handling of the duty of confidentiality included 1) Training and practice in family involvement, and 2) Standardisation of family involvement practices. Conclusion: When health professionals gained competence in and positive experiences with family involvement, this led to vital changes in how they interpreted and practiced the duty of confidentiality in their ethical reasoning and in clinical practice. Especially, the need to provide sufficient information to the patients about family involvement became evident during the study. To improve the handling of confidentiality issues, professionals should receive training in family involvement and confidentiality statutes followed by practice. Furthermore, family involvement should be standardised, and confidentiality guidelines should be implemented in the mental health services.

• Husum, Tonje Lossius; Pedersen, Reidar & Aasland, Olaf Gjerløw (2022). Frequent Violations and Infringements against Users in Mental Health Care Confirmed by Both Users and Professionals–A Quantitative Study. Issues in Mental Health Nursing. ISSN 0161-2840. 43(9), p. 862–869. doi: 10.1080/01612840.2022.2063461. Full text in Research Archive
• Hansson, Kristiane Myckland; Romøren, Maria; Pedersen, Reidar; Weimand, Bente Margrethe; Hestmark, Lars & Norheim, Irene [Show all 9 contributors for this article] (2022). Barriers and facilitators when implementing family involvement for persons with psychotic disorders in community mental health centres - a nested qualitative study. BMC Health Services Research. ISSN 1472-6963. 22(1). doi: 10.1186/s12913-022-08489-y. Full text in Research Archive Show summary

  Background The uptake of family involvement in health care services for patients with psychotic disorders is poor, despite a clear evidence base, socio-economic and moral justifications, policy, and guideline recommendations. To respond to this knowledge-practice gap, we established the cluster randomised controlled trial: Implementation of guidelines on Family Involvement for persons with Psychotic disorders in community mental health centres (IFIP). Nested in the IFIP trial, this sub-study aims to explore what organisational and clinical barriers and facilitators local implementation teams and clinicians experience when implementing family involvement in mental health care for persons with psychotic disorders. Methods We performed 21 semi-structured focus groups, including 75 participants in total. Implementation team members were interviewed at the initial and middle phases of the intervention period, while clinicians who were not in the implementation team were interviewed in the late phase. A purposive sampling approach was used to recruit participants with various engagement in the implementation process. Data were analysed using manifest content analysis. Results Organisational barriers to involvement included: 1) Lack of shared knowledge, perceptions, and practice 2) Lack of routines 3) Lack of resources and logistics. Clinical barriers included: 4) Patient-related factors 5) Relative-related factors 6) Provider-related factors. Organisational facilitators for involvement included: 1) Whole-ward approach 2) Appointed and dedicated roles 3) Standardisation and routines. Clinical facilitators included: 4) External implementation support 5) Understanding, skills, and self-efficacy among mental health professionals 6) Awareness and attitudes among mental health professionals. Conclusions Implementing family involvement in health care services for persons with psychotic disorders is possible through a whole-ward and multi-level approach, ensured by organisational- and leadership commitment. Providing training in family psychoeducation to all staff, establishing routines to offer a basic level of family involvement to all patients, and ensuring that clinicians get experience with family involvement, reduce or dissolve core barriers. Having access to external implementation support appears decisive to initiate, promote and evaluate implementation. Our findings also point to future policy, practice and implementation developments to offer adequate treatment and support to all patients with severe mental illness and their families.

• Hestmark, Lars; Heiervang, Kristin S.; Pedersen, Reidar; Hansson, Kristiane Myckland; Ruud, Torleif & Romøren, Maria (2021). Family involvement practices for persons with psychotic disorders in community mental health centres – a cross-sectional fidelity-based study. BMC Psychiatry. ISSN 1471-244X. 21, p. 1–11. doi: 10.1186/s12888-021-03300-4. Full text in Research Archive

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  Implementering av retningslinjer for familieinvolvering for personer med psykoselidelser: Resultater fra Bedre Pårørendesamarbeid (BPS)-studien Introduksjon: Familieinvolvering er en del av den evidensbaserte behandlingen for personer med psykoselidelser, men er underimplementert til tross for at nasjonale og internasjonale retningslinjer anbefaler familieinvolvering som førstevalgs behandling. BPS-studien hadde som mål å 1) utforske hvilke organisatoriske og kliniske hemmere og fremmere lokale implementeringsteam og klinikere opplevde (ved implementering av familieinvolvering), 2) vurdere om et implementeringsstøtteprogram (ISP) økte implementeringsgraden av retningslinjer for familieinvolvering, og 3) undersøke effekten av IPS på pårørendetilbud ved distriktpsykiatriske sentre (DPS), og på pasienter og pårørendes opplevde psykososiale helse, livskvalitet og tilfredshet med tjenestene. Metoder: En klyngerandomisert kontrollert multisenter studie ble utført ved 15 DPS enheter i Helse Sør-Øst. Rekrutterte enheter ble randomisert til intervensjon (ISP) eller kontrollgruppe. Deretter rekrutterte enhetene psykosepasienter og deres nærmeste pårørende til å delta i studien. Data ble innhentet gjennom fokusgruppeintervjuer med klinikere, forbedringsteam og ledere, intervjuer med pasienter og pårørende, fidelitymålinger, og spørreskjemaer til pasienter, pårørende og klinikere. Resultater: Det å gi opplæring i psykoedukativt familiesamarbeid (PEF) til ansatte, etablere rutiner for å tilby grunnleggende familieinvolvering til alle pasienter, og sikre at klinikere får erfaring med familieinvolvering, er viktige fremmere. Implementeringsgraden av retningslinjer for familieinvolvering og mengden av ulike typer familie- og støttekonsultasjoner, inkludert PEF, var signifikant større i intervensjonsgruppen enn i kontrollgruppen. Familieinvolvering bidro til felles forståelse, anerkjennelse og gjensidig dialog mellom pårørende, pasienter og klinikere. Resultatene fra 231 pasient-/pårørendepar er under arbeid. Konklusjon: Implementering av familieinvolvering i DPS enheter for personer med psykoselidelser er mulig gjennom en helhetlig tilnærming på flere nivåer, sikret av tydelig ledelsesforankring og engasjement i organisasjonen. Denne studien viser at god implementeringsstøtte er svært viktig for at helsetjenesten skal kunne tilby evidensbasert behandling. Resultatene kan ha overføringsverdi til pasienter med andre alvorlige psykiske lidelser og deres pårørende.

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  Forskning og fagutvikling har hatt stor betydning for innføring av systematisk pårørendesamarbeid i helsetjenestene, og for utvikling av en samtaleguide for helsepersonell.

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