Young adults' experiences of living with paediatric acute-onset neuropsychiatric syndrome. An interview study.

AIM: This article explores experiential knowledge of living with paediatric acute-onset neuropsychiatric syndrome (PANS), and the factors that are associated with perceived good care. METHODS: Ten people with lived experience of PANS participated, five women and five men aged 19-34. Semi-structured interviews were used to explore their experience of living with PANS and their encounters with healthcare. Thematic analysis was carried out to identify central themes in the transcribed interviews. RESULTS: The study revealed a group of young adults living fairly isolated lives, dependent on care from relatives. To them, the illness was a tangible presence. They perceived a lack of knowledge among healthcare staff on PANS in healthcare, and negative consequences linked to this. In addition, their experience-based knowledge of their own illness is devalued in healthcare encounters. A feeling of being pushed around in healthcare, without anyone taking responsibility for the treatment, emerged in the interviews. The participants emphasized the need for increased knowledge among staff to identify PANS and be able to offer effective treatment. CONCLUSION: There is a need to increase the knowledge about PANS in healthcare and to coordinating care between neurology, immunology and psychiatry. To be able to offer evidence-based care to children with PANS, in-depth knowledge is needed about aetiology, treatment effects, and user experiences and preferences.

Developing sustainable service user involvement practices in mental health services in Sweden: the "Userinvolve" research program protocol.

Background: The purpose of this paper is to outline the protocol for the research program "UserInvolve," with the aim of developing sustainable, service user involvement practices in mental health services in Sweden. Methods: This protocol outlines the knowledge gap and aim of the UserInvolve-program. It further provides an overview of the research infrastructure, with specific focus on the organization and management of the program as well as the design of the six underlying research projects. These six research projects form the core of the UserInvolve-program and will be carried out during a six-year period (2022-2027). The projects are focused on examining articulations of experiential knowledge in user collectives, on four specific user involvement interventions (shared decision-making, peer support, user-focused monitoring, and systemic involvement methods) and on developing theory and method on co-production in mental health research and practice. Results or conclusion: The knowledge gained through the co-production approach will be disseminated throughout the program years, targeting service users, welfare actors and the research community. Based on these research activities, our impact goals relate to strengthening the legitimacy of and methods for co-production in the mental health research and practice field.

Who cares? A scoping review about the experiences of parental caregivers of autistic adults.

BACKGROUND: The autistic population is growing and ageing and this also applies to the parents. Despite this, research about parental experiences is still relatively scarce. Even though studies show, compared with adults with other disabilities, parents of autistic adolescents and adults report a decrease in well-being and that caregiving is often a lifelong commitment. METHOD: This scoping review maps, synthesises and identifies gaps in previous research as regards the experiences of parental caregivers of adult autistic children. The review was based on Arksey and Malley's framework and six databases were searched. RESULTS: The results show how the research has focused on the well-being and consequences of daily caregiving for an American middle-class mother who co-resides with an adult son. CONCLUSION: To enhance knowledge about formal services and service needs, more research is necessary on different welfare regimes and social contexts.

Review: Young people's recovery processes from mental health problems - a scoping review.

BACKGROUND: Recovery from mental illness and mental health problems is relatively well-researched among adults, but evidence that focuses on the recovery experiences of young people and what characterizes it is scarce. With this in mind, this article aims to map out the existing research in order to identify prevailing knowledge about the recovery of young people between the ages of 12 and 25. METHOD: Drawing on scoping review methodology, this article is based on an analysis of 33 articles conducted in the USA, Australia, and Europe. RESULTS: Our findings reveal that young people express both similar and divergent lines of reasoning about recovery compared with adults. Our findings also indicate that young people often fluctuate in the way they view recovery, and that they thus tend to be ambivalent about what recovery means. Parents usually highlight the importance of professionals facilitating recovery, while care staff problematize the organizational frameworks available as aggravating circumstances for implementing personal recovery. Young people, parents, and care staff consistently describe recovery as a way to, despite lingering problems, enable a satisfying life. CONCLUSIONS: Through this review, we outline the need for a more distinct focus on agency and participation in young people's recovery processes, at the same time as family involvement needs to be further investigated and operationalized.

The implementation of a culturally tailored parenting support programme for Somali immigrant parents living in Sweden-A process evaluation.

BACKGROUND: Parental support programmes aim to strengthen family functioning and the parent-child relationship and to promote the mental health of children and parents. However, there is a lack of knowledge on how parenting support programmes can be implemented for newly arrived immigrant parents. This process evaluation describes the implementation of a successful parenting programme for immigrant parents from Somalia and identifies key components of the implementation process with a focus on Reach, Adaptation, and Fidelity of Ladnaan intervention. METHOD: This process evaluation considered context, implementation and mechanism of impact, in accordance with the Medical Research Council's guidance. Data were collected through focus group discussions, a questionnaire, attendance lists, field and reflection notes and observations of the sessions. The data were then analysed using content analysis and descriptive statistics. RESULTS: Of the 60 parents invited to the parenting programme, 58 participated in the sessions. The study showed that involving key individuals in the early stage of the parenting programme's implementation facilitated reaching Somali-born parents. To retain the programme participants, parents were offered free transportation. The programme was implemented and delivered as intended. A majority of the parents were satisfied with the programme and reported increased knowledge about children's rights and the support they could seek from social services. CONCLUSIONS: This study illustrates how a parenting support programme can be implemented for Somali-born parents and provides guidance on how to attract immigrant parents to and engage them in participating in parenting support programmes.

Legitimizing user knowledge in mental health services: Epistemic (in)justice and barriers to knowledge integration.

Including the voices and knowledge of service users is essential for developing recovery-oriented and evidence-based mental health services. Recent studies have however, suggested that challenges remain to the legitimization of user knowledge in practice. To further explore such challenges, a co-production study was conducted by a team of researchers and representatives from user organizations in Sweden. The aim of the study was to explore the barriers and facilitators to the legitimacy of user knowledge, as a central factor in sustainably implementing user influence in mental health practice. A series of workshops, with representatives of mental health services and user organizations were conducted by the research team to explore these issues. The analysis built on the theoretical framework of epistemic injustice, and the underlying aspects, testimonial, hermeneutic and participation-based injustice, were utilized as a framework for a deductive analysis. Results suggest that this is a useful model for exploring the complex dynamics related to the legitimacy of user knowledge in mental health systems. The analysis suggests that the legitimacy of user knowledge is related to the representativeness of the knowledge base, the systematic formulation of this knowledge in applicable methods, access to resources and positions within the mental health system and participation in the process of integrating this knowledge-base in mental health contexts. Legitimizing user knowledge in practice additionally challenges mental health systems to support readiness for change in working environments and to address the power and role issues that these changes involve.

The Swedish social services' police reporting and children's access to protection and support in child abuse cases: A quantitative content analysis.

BACKGROUND: The UN Convention on the Rights of the Child prohibits all forms of violence against children. Sweden was early in introducing a ban on disciplinary violence; however, difficulties have been noted in identifying children in need of protection and providing help for children exposed to violence. OBJECTIVES: The purpose of this study was to explore the social services' police reporting and children's access to protection and support in cases of physical and sexual child abuse. METHODS: The sample consisted of 291 child welfare reports from three Swedish municipalities. Data were collected from child welfare reports, investigations, and child social records and analyzed using quantitative content analysis. RESULTS: A majority of the cases, including cases with a high indication for police reporting, were not reported to the police by the social services. Although the child in 60.1 % of cases provided information about violence, 70.7 % of all child welfare investigations were completed without support measures, and only 8.2 % led to protection or support linked to violence. Children's participation was limited, suggesting inadequate conditions for children's access to protection and support. CONCLUSIONS: Children's right to protection against violence requires the recognition of children as active participants with access to safe participation. Failure to report suspected crimes against children risks minimizing acts of violence or making violence invisible. Difficulties in handling conflicts of interest between children and parents risk neither protection nor support being provided for the child.

Patient Participation and the Environment: A Scoping Review of Instruments.

Patient participation and the environment are critical factors in achieving qualitative healthcare. We conducted a systematic scoping review using Arksey and O'Malley's framework to identify instruments intended to measure patient participation. We assessed those instruments' characteristics, which areas of the healthcare continuum they target, and whether environmental factors are considered. Instruments were considered eligible if they represented the patient perspective and measured patient participation in healthcare. The search was limited to articles written in English and published in the last 10 years. We extracted concepts (i.e., patient empowerment, patient participation, and patient-centeredness) based on the framework developed by Castro et al. and outcomes of significance regarding the review questions and specific objectives. The search was conducted in PsycINFO, CINHAL/EBSCO, and PubMed in September 2019 and July 2020. Of 4802 potential titles, 67 studies reported on a total of 45 instruments that met the inclusion criteria for this review. The concept of patient participation was represented most often in these studies. Although some considered the social environment, no instrument was found to incorporate and address the physical environment. Thirteen instruments were generic and the remaining instruments were intended for specific diagnoses or healthcare contexts. Our work is the first to study instruments from this perspective, and we conclude that there is a lack of instruments that measure aspects of the social and physical environment coherently as part of patient participation.

Staff's experiences of implementing patient-initiated brief admission for adolescents from the perspective of epistemic (in)justice.

Background: The implementation of Patient-Initiated Brief Admission (PIBA) in child and adolescent psychiatry (CAP) in Sweden is ongoing. This intervention enables adolescents between the ages of 13-17 and with complex mental health problems to initiate a short care period for relief and support rather than the care apparatus being controlling in this process. Offering it is likely to promote epistemic agency, an exchange of knowledge and recovery from mental health problems. Aim: The aim of this study was to explore staff's perspectives of PIBA for adolescents with complex mental health problems, and what facilitates or hinders its implementation. Methods: Twenty seven employees, 21 women and six men, with various professions in CAP were interviewed and the material was analyzed thematically. Results: Two overall themes emerged: "Staff's Experiences of PIBA" and "Managing Clinical PIBA Work." The results were discussed in relation to the theoretical frameworks of epistemic injustice and Normalization Process Theory (NPT). The main findings indicate that PIBA was generally viewed in a positive way, but that obstacles arose when it was actually put into practice. Findings also point at an overall lack of agency among staff when implementing this new way of working, at the same time as the need to adapt PIBA from an adult psychiatric intervention to one for adolescents in CAP is addressed. Conclusion: This article offers insights into the views of psychiatric staff regarding the implementation of PIBA. If staff wish to support epistemic agency and recovery among adolescents, their agency may be an important aspect in the continued implementation. Furthermore, in order for PIBA to become normalized in a sustainable way, we suggest that the continued implementation should be characterized by a youth-friendly framework.

Impact of a culturally tailored parenting programme on the mental health of Somali parents and children living in Sweden: a longitudinal cohort study.

OBJECTIVES: This study aimed to evaluate the long-term impact (3-year follow-up) of a culturally tailored parenting support programme (Ladnaan) on the mental health of Somali-born parents and their children living in Sweden. METHODS: In this longitudinal cohort study, Somali-born parents with children aged 11-16 were followed up 3 years after they had participated in the Ladnaan intervention. The Ladnaan intervention comprises two main components: societal information and the Connect parenting programme delivered using a culturally sensitive approach. It consists of 12 weekly group-based sessions each lasting 1-2 hours. The primary outcome was improved mental health in children, as measured by the Child Behaviour Checklist (CBCL). The secondary outcome was improved mental health in parents, as measured by the General Health Questionnaire-12. Data were collected from the parent's perspective. RESULTS: Of the 60 parents who were originally offered the intervention, 51 were included in this long-term follow-up. The one-way repeated measures (baseline to the 3-year follow-up) analysis of variance for the CBCL confirmed maintenance of all the treatment gains for children: total problem scores (95% CI 11.49 to 18.00, d=1.57), and externalising problems (95% CI 2.48 to 5.83, d=0.86). Similar results were observed for the parents' mental health (95% CI 0.40 to 3.11, d=0.46). CONCLUSION: Positive changes in the mental health of Somali-born parents and their children were maintained 3 years after they had participated in a parenting support programme that was culturally tailored and specifically designed to address their needs. Our findings highlight the long-term potential benefits of these programmes in tackling mental health issues in immigrant families. TRIAL REGISTRATION NUMBER: NCT02114593.

How do users with comorbidity perceive participation in social services? A qualitative interview study.

Purpose: This study aims to construct a theoretical framework that explains how users with comorbidity of substance use and mental illness/neuropsychiatric disorders portray user participation in social work encounters.Methods: To construct this framework a constructivist grounded theory approach was used with semi-structured qualitative interviews with 12 users.Results: The main concern of the participants was the low trust in the social services and perceiving that this lack of trust is mutual. Establishing mutual trust is a social process that cuts through the whole framework. In the framework, prerequisites for participation are explained. The prerequisites are users being motivated and having the willingness to stop using drugs and receiving support, making use of user and staff knowledge and decision-making abilities and accessing help and support.Conclusion: Unlike previous frameworks, the model describes participation as a social process and does not explain participation at different levels of power. The results suggest that staff need to be aware of low trust perceptions and work on establishing mutual trust. In addition, the staff need to see each user as an individual and consider how the user would prefer to be involved in decision-making.

Co-creating a process of user involvement and shared decision-making in coordinated care planning with users and caregivers in social services.

PURPOSE: Although user participation and shared decision-making in formal statutory coordinated care planning are described as central, they remain to be implemented. The aim of this study is to explore how collaboration and shared decision-making in the social services can be realized in formal care planning activities with people with mental disabilities. METHODS: We conducted eight workshops with 12 users and 17 caregivers to investigate existing barriers to and possible solutions for participation in coordinated care planning. RESULTS: Workshop formats and techniques from participatory design generated rich research materials illustrating challenges currently experienced by users and caregivers in care planning work, as well as a large variety of solutions to these challenges. They also illustrated differences in how participation is understood and the conditions required to realize shared decision-making between users and caregivers. CONCLUSIONS: An improved coordinated individual plan (CIP) process emerged, based on the active participation of users and caregivers. This process is a familiar and transparent process for users and caregivers, reflecting the needs and preferences of users at all stages. It requires careful preparation and collaboration with the users, as well as caregiver flexibility.

Qualitative study showed that a culturally tailored parenting programme improved the confidence and skills of Somali immigrants.

AIM: Parenting programmes tailored to immigrant parents have been reported to improve the mental health of the children and parents, as well as parents' sense of competence in parenting. However, research on parents' experiences of programmes tailored to their needs is scarce. This qualitative study aimed to describe Somali parents' experiences of how a culturally sensitive programme affected their parenting. METHODS: The study was conducted in a middle-sized city in Sweden in 2015. Data were collected through semi-structured interviews with 50 participants two months after they took part in a parenting support programme. Inductive and deductive qualitative content analyses were used. RESULTS: A light has been shed was a metaphor that emerged from the analysis and that captured the knowledge the parents gained from the parenting system in Sweden. Parents gained confidence in their parenting role and became emotionally aware of their child's social and emotional needs and how to respond to them. Holding the sessions in the participant's native language was important for the parents' participation and acceptance of the programme. CONCLUSION: Parenting programmes should be tailored to the specific needs of the participants and cultural sensitivity should be factored into programmes to attract immigrant parents.

Psychiatric service staff perceptions of implementing a shared decision-making tool: a process evaluation study.

PURPOSE: Shared decision making, SDM, in psychiatric services, supports users to experience a greater sense of involvement in treatment, self-efficacy, autonomy and reduced coercion. Decision tools adapted to the needs of users have the potential to support SDM and restructure how users and staff work together to arrive at shared decisions. The aim of this study was to describe and analyse the implementation process of an SDM intervention for users of psychiatric services in Sweden. METHOD: The implementation was studied through a process evaluation utilizing both quantitative and qualitative methods. In designing the process evaluation for the intervention, three evaluation components were emphasized: contextual factors, implementation issues and mechanisms of impact. RESULTS: The study addresses critical implementation issues related to decision-making authority, the perceived decision-making ability of users and the readiness of the service to increase influence and participation. It also emphasizes the importance of facilitation, as well as suggesting contextual adaptations that may be relevant for the local organizations. CONCLUSION: The results indicate that staff perceived the decision support tool as user-friendly and useful in supporting participation in decision-making, and suggest that such concrete supports to participation can be a factor in implementation if adequate attention is paid to organizational contexts and structures.

Effects of a culturally tailored parenting support programme in Somali-born parents' mental health and sense of competence in parenting: a randomised controlled trial.

OBJECTIVES: To evaluate the effectiveness of a culturally tailored parenting support programme on Somali-born parents' mental health and sense of competence in parenting. DESIGN: Randomised controlled trial. SETTING: A city in the middle of Sweden. PARTICIPANTS: Somali-born parents (n=120) with children aged 11-16 years and self-perceived stress in their parenting were randomised to an intervention group (n=60) or a waiting-list control group (n=60). INTERVENTION: Parents in the intervention group received culturally tailored societal information combined with the Connect parenting programme during 12 weeks for 1-2 hours per week. The intervention consisted of a standardised training programme delivered by nine group leaders of Somali background. OUTCOME: The General Health Questionnaire 12 was used to measure parents' mental health and the Parenting Sense of Competence scale to measure parent satisfaction and efficacy in the parent role. Analysis was conducted using intention-to-treat principles. RESULTS: The results indicated that parents in the intervention group showed significant improvement in mental health compared with the parents in the control group at a 2-month follow-up: B=3.62, 95% CI 2.01 to 5.18, p<0.001. Further, significant improvement was found for efficacy (B=-6.72, 95% CI -8.15 to -5.28, p<0.001) and satisfaction (B=-4.48, 95% CI -6.27 to -2.69, p<0.001) for parents in the intervention group. Parents' satisfaction mediated the intervention effect on parental mental health (ß=-0.88, 95% CI -1.84 to -0.16, p=0.047). CONCLUSION: The culturally tailored parenting support programme led to improved mental health of Somali-born parents and their sense of competence in parenting 2 months after the intervention. The study underlines the importance of acknowledging immigrant parents' need for societal information in parent support programmes and the importance of delivering these programmes in a culturally sensitive manner. CLINICAL TRIAL REGISTRATION: NCT02114593.

Development and usability testing of a web-based decision support for users and health professionals in psychiatric services.

OBJECTIVE: Shared decision making (SMD) related to treatment and rehabilitation is considered a central component in recovery-oriented practice. Although decision aids are regarded as an essential component for successfully implementing SDM, these aids are often lacking within psychiatric services. The aim of this study was to use a participatory design to facilitate the development of a user-generated, web-based decision aid for individuals receiving psychiatric services. The results of this effort as well as the lessons learned during the development and usability processes are reported. METHOD: The participatory design included 4 iterative cycles of development. Various qualitative methods for data collection were used with potential end users participating as informants in focus group and individual interviews and as usability and pilot testers. RESULTS: Interviewing and testing identified usability problems that then led to refinements and making the subsequent prototypes increasingly user-friendly and relevant. In each phase of the process, feedback from potential end-users provided guidance in developing the formation of the web-based decision aid that strengthens the position of users by integrating access to information regarding alternative supports, interactivity between staff and users, and user preferences as a continual focus in the tool. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: This web-based decision aid has the potential to strengthen service users' experience of self-efficacy and control as well as provide staff access to user knowledge and preferences. Studies employing participatory models focusing on usability have potential to significantly contribute to the development and implementation of tools that reflect user perspectives. (PsycINFO Database Record

A Support Program for Somali-born Parents on Children's Behavioral Problems.

OBJECTIVES: The objectives of this study were to evaluate a culturally tailored parenting support program (Ladnaan) for Somali-born parents and to determine its effectiveness on children's emotional and behavioral problems. METHODS: This randomized controlled trial included 120 Somali-born parents with children aged 11 to 16 years. The parents reported self-perceived stress in relation to parenting practices. The intervention consisted of culturally tailored societal information combined with the parenting program Connect. Parents received 12 weeks of intervention, 1 to 2 hours each week, in groups of 12 to 17 parents. Nine group leaders with a Somali background who received a standardized training program delivered the intervention. The primary outcome was a decrease in emotional and behavioral problems based on a Child Behavior Checklist. Parents were randomly allocated either to an intervention group or a wait-list control group. Covariance analyses were conducted according to intention-to-treat principles. RESULTS: The results showed significant improvement in the children in the intervention group for behavioral problems after a 2-month follow-up. The largest effect sizes according to Cohen's d were in aggressive behavior (95% confidence interval [CI], 1.06 to 3.07), social problems (95% CI, 0.64 to 1.70), and externalizing problems (95% CI, 0.96 to 3.53). CONCLUSIONS: The large effect sizes in this study show that this 12-week culturally tailored parenting support program was associated with short-term improvements in children's behavior. The study adds to the field of parenting interventions by demonstrating how to culturally tailor, engage, and retain parenting programs for immigrant parents.

Shared decision making in Swedish community mental health services - an evaluation of three self-reporting instruments.

BACKGROUND: Despite the potential impact of shared decision making on users satisfaction with care and quality in health care decisions, there is a lack of knowledge and skills regarding how to work with shared decision making among health care providers. AIM: The aim of this study was to evaluate the psychometric properties of three instruments that measure varied dimensions of shared decision making, based on self-reports by clients, in a Swedish community mental health context. METHOD: The study sample consisted of 121 clients with experience of community mental health care, and involved in a wide range of decisions regarding both social support and treatment. The questionnaires were examined for face and content validity, internal consistency, test-retest reliability and construct validity. RESULTS: The instruments displayed good face and content validity, satisfactory internal consistency and a moderate to good level of stability in test-retest reliability with fair to moderate construct correlations, in a sample of clients with serious mental illness and experience of community mental health services in Sweden. CONCLUSIONS: The questionnaires are considered to be relevant to the decision making process, user-friendly and appropriate in a Swedish community mental health care context. They functioned well in settings where non-medical decisions, regarding social and support services, are the primary focus. The use of instruments that measure various dimensions of the self-reported experience of clients, can be a key factor in developing knowledge of how best to implement shared decision making in mental health services.

Shared decision-making in mental health care-A user perspective on decisional needs in community-based services.

BACKGROUND: Shared decision-making (SDM) is an emergent research topic in the field of mental health care and is considered to be a central component of a recovery-oriented system. Despite the evidence suggesting the benefits of this change in the power relationship between users and practitioners, the method has not been widely implemented in clinical practice. OBJECTIVE: The objective of this study was to investigate decisional and information needs among users with mental illness as a prerequisite for the development of a decision support tool aimed at supporting SDM in community-based mental health services in Sweden. METHODS: Three semi-structured focus group interviews were conducted with 22 adult users with mental illness. The transcribed interviews were analyzed using a directed content analysis. This method was used to develop an in-depth understanding of the decisional process as well as to validate and conceptually extend Elwyn et al.'s model of SDM. RESULTS: The model Elwyn et al. have created for SDM in somatic care fits well for mental health services, both in terms of process and content. However, the results also suggest an extension of the model because decisions related to mental illness are often complex and involve a number of life domains. Issues related to social context and individual recovery point to the need for a preparation phase focused on establishing cooperation and mutual understanding as well as a clear follow-up phase that allows for feedback and adjustments to the decision-making process. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: The current study contributes to a deeper understanding of decisional and information needs among users of community-based mental health services that may reduce barriers to participation in decision-making. The results also shed light on attitudinal, relationship-based, and cognitive factors that are important to consider in adapting SDM in the mental health system.