Norwegian health personnel's contacts and referrals for children of ill parents: an exploratory cross-sectional multi-centre study.

BACKGROUND: In 2010, changes were made to the Norwegian Health Personnel Act. This led to all health personnel being obliged to support the patients' children and families. The aims of this study were to investigate whether health personnel contacted or referred the patients' children to family/friends or public services. We also investigated if there were factors in the family or the services that increased or decreased the degree of contacts and referrals. In addition the patients were asked whether the law had been a help or even a burden. This study was part of a larger multi-site study of children of ill parents conducted in five health trusts in Norway. METHOD: We used cross-sectional data from 518 patients and 278 health personnel. The informants completed a questionnaire addressing the law. Data were analyzed by factor analysis and logistic regression. RESULTS: The health personnel contacted/referred children to different services, but not to the degree desired by their parents. Only a few contacted family/friends, or the school and/or the public health nurse, those representing the helpers who live closest to the child, and thus well situated to participate in help and preventive efforts. The service most often referred to was the child welfare service. CONCLUSION: The results indicate a change in contacts/referrals for children from their parents' health personnel but also reveal remaining needs for support/help for these children. Health personnel should strive to write more referrals and take more contacts than the current study suggests, to secure adequate support for children of ill parents in Norway, as intended in The Health Personnel Act.

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.

Editorial Perspective: Prato Research Collaborative for change in parent and child mental health - principles and recommendations for working with children and parents living with parental mental illness.

Children whose parents have mental illnesses are among the most vulnerable in our communities. There is however, much that can be done to prevent or mitigate the impact of a parent's illness on children. Notwithstanding the availability of several evidence-based interventions, efforts to support these children have been limited by a lack of adequate support structures. Major service reorientation is required to better meet the needs of these children and their families. This editorial provides recommendations for practice, organisational, and systems change.

A Sustainability Model for Family-Focused Practice in Adult Mental Health Services.

BACKGROUND: Translating evidence-based practice to routine care is known to take significant time and effort. While many evidenced-based family-focused practices have been developed and piloted in the last 30 years, there is little evidence of sustained practice in Adult Mental Health Services. Moreover, many barriers have been identified at both the practitioner and organizational level, however sustainability of practice change is little understood. What is clear, is that sustained use of a new practice is dependent on more than individual practitioners' practice. DESIGN AND METHOD: Drawing on research on sustaining Let's Talk about Children in adult mental health services and in the field of implementation science, this article proposes a model for sustaining family focused practice in adult mental health services. SUSTAINABILITY MODEL FOR FAMILY-FOCUSED PRACTICE: An operational model developed from key elements for sustaining Let's Talk about Children identifies six action points for Adult Mental Health Services and their contexts to support the sustainability of family-focused practices. The model aims to support Services to take action in the complexity of real-world sustainability, providing action points for engaging with service users and practitioners, aligning intra-organizational activities, and the wider context. CONCLUSION: The model for sustaining family-focused practice draws attention to the importance of sustainability in this field. It provides a practical framework for program developers, implementers, adult mental health services and policy-makers to consider both the components that support the sustainability and their interconnection. The model could be built on to develop implementation guides and measures to support its application.

Factors associated with quality of life for children affected by parental illness or substance abuse.

BACKGROUND: There have been inconsistent findings from studies examining factors associated with quality of life (QoL) for children affected by parental illness. AIM: The aim of this study was to explore factors associated with self-reported QoL in children affected by parental illness or parental substance abuse. DESIGN: A cross-sectional multicentre study. METHODS: The sample included 246 families with children 8-18 years recruited via ill parents who received treatment for severe physical illness, mental illness or substance abuse in specialised health services. We performed multiple linear regression analyses to examine factors associated with the children's self-reported QoL. MAIN OUTCOME MEASURE: KIDSCREEN-27. RESULTS: The children's self-reported QoL was positively associated with the ill parent's self-reported physical health, the children's self-reported social skills, the degree to which other adults took over the ill parent's responsibilities, provision of sibling care, provision of health care for the ill parent and positive outcome of caregiving. The children's QoL was negatively associated with the children's self-reported responsibilities due to parental illness, provision of emotional care for the ill parent, negative outcomes of caregiving and external locus of control. The model explained 63% of the variance (adjusted R2 ) in children's total QoL. STUDY LIMITATIONS: Sampling bias may have occurred during recruitment. CONCLUSIONS: The findings suggest factors of importance for the children's QoL. Clinicians should assess whether an ill parent's physical health may influence negatively on their ability to perform daily responsibilities at home and care for their children, and clinicians can use children's self-reported QoL to identify children who are most negatively affected.

'I have cried a lot': a qualitative study on children experiencing severe parental illness.

BACKGROUND: A considerable body of research has explored implications of severe parental illness on children. However, less is known about what children and adolescents with a severely ill parent experience as the most challenging. AIMS: To describe what children with a severely ill parent experience as their most difficult challenge. METHODS: A qualitative descriptive design with a manifest content analysis was used on data from a cross-sectional, multicenter study on children of patients in five Norwegian Health trusts. Data consisted of written textual responds from 238 children (age 8-18) to one open-ended question in a self-report questionnaire. RESULTS: The overall theme concerning the children's most difficult challenge was named 'the drama of life unfoldment', reflecting the parental illness' impact on themselves, their relationships with others, and their life circumstances. The subthemes consisted of: Children's experiences of difficult thoughts and feelings; negatively impaired relationship with parents, friends and others; and challenging life events and obstacles in welfare. CONCLUSIONS: The most difficult challenge experienced by the children with a severely ill parent implies life unfoldment challenges and include negative personal and relational impact, challenging life events and obstacles in welfare.

An explanatory model of factors enabling sustainability of let's talk in an adult mental health service: a participatory case study.

BACKGROUND: While effective interventions have been developed to support families where a parent has a mental illness in Adult Mental Health Services, embedding and sustaining them is challenging resulting in families not having access to support. This study developed an explanatory model of influencers that had enabled sustainability of the Let's Talk intervention in one service. METHODS: A participatory case study was used to build an explanatory model of sustainability at the service using theoretical frameworks. Qualitative and quantitative data was collected about practitioner's practice and the organisation's implementation process and capacity to support practice. A local research group worked with the researcher using a transforming data approach through description, analysis and interpretation. RESULTS: Influencers were grouped into four major categories: (1) External social, political and financial context, (2) Resources, (3) Prior organisational capacity and (4) Sustainability Factors. The last category, Sustainability factors, was divided into three subcategories: (4.1) Practitioner (4.2) Organisation and (4.3) Parent-Client. These categories form part of an explanatory model for the key influencers of continued practitioner practice and organisational capacity to support practice. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: In this case study, the pre-existing organisational context along with practitioner, organisation and parent-client factors operated together to influence sustainability. The results suggest that sustainability is more likely to be supported by both linking Let's Talk to existing organisational identity, capacity, structures and relationships and by supporting mutual adaptations to improve the fit. Additionally, by understanding that setbacks are common and ongoing adjustments are needed, implementers are able to have realistic expectations of sustainability.

Continued capacity: Factors of importance for organizations to support continued Let's Talk practice - a mixed-methods study.

Sustainability is a desired outcome of implementation. Understanding how organizations support new practices after implementation is important for sustainability. Let's Talk about Children (hereby referred to as 'Let's Talk'), a family-focused intervention with parents with a mental illness, improves family, parent, and child outcomes. Little is understood about how organizations support sustained practice. The study aimed to (i) understand the implementation process that occurred in eight adult mental health services during a previous randomized controlled trial; (ii) establish their continued capacity to embed Let's Talk; and (iii) explore links between organizational capacity and sustained delivery by practitioners. This mixed method study used a questionnaire and individual interviews to collect data on the implementation process and current organizational capacity to support Let's Talk 12months after the randomized controlled trial. Links between organizational capacity and the adult mental health services with practitioners' continuing to use Let's Talk in the past 12 months were explored. Services with higher current organizational capacity scores had practitioners currently delivering Let's Talk. These services had all made changes to their organizational structures to support Let's Talk practice. All services experienced significant changes during and after implementation, influencing sustainability of Let's Talk. Addressing organizational capacity appears to be important to enable sustainability of Let's Talk implementation endeavours. Real-world settings are constantly changing systems requiring ongoing tracking and adjustments to understand and support sustainability. Internal service development staff appear to support the shaping of organizational capacity to support Let's Talk; however, broader organizational support is needed for change within a complex system.

Practitioners' application of Let's Talk about Children intervention in adult mental health services.

Family-focused interventions can improve outcomes for families where a parent has a mental illness. One such intervention, Let's Talk about Children (Let's Talk), is a series of parent-practitioner conversations in adult mental health with demonstrated improved outcomes for child, parent, and family well-being. This study used a questionnaire to understand the application of Let's Talk by n = 73 trained practitioners from eight adult mental health services who were previously involved in a randomized controlled study in Victoria, Australia. Data were analysed to establish the application of Let's Talk, and statistical analyses were undertaken to identify what influenced practitioners' delivery of Let's Talk. The study details how practitioners used Let's Talk and indicates that most used it as designed, with the majority offering it to parents and approximately 40% delivering it. The findings indicate there is a decline over time in both the number of practitioners using Let's Talk and the number of deliveries over time. Practitioners' use of Let's Talk was influenced by their gender, profession, access to support, time since training, and caseload. The article discusses the implications of these results for sustaining Let's Talk in adult mental health services. While this study gives a baseline of practitioners' application of Let's Talk, further exploration of the experience of practitioners and parents as well as other system factors will be helpful to understand barriers and enablers to continued practice.

Leadership perspectives on key elements influencing implementing a family-focused intervention in mental health services.

WHAT IS KNOWN ON THE SUBJECT?: Family-focused interventions in Adult Mental Health Services (AMHS) address the needs of families where a parent is diagnosed with a mental illness. One of these interventions is the "Let's Talk about Children" programme (Let's Talk) (Solantaus & Toikka, 2006 International Journal of Mental Health Promotion, 8(3), 37). There is limited implementation knowledge on family-focused interventions. A body of research to better understand the transfer of evidence-based interventions into everyday practice has identified multiple influencing elements. The Consolidated Framework for Implementation Research (CFIR) has combined these known elements from research into five domains of influence. Elements that influence the implementation of evidence-based practice are inter-related and need to be understood in combination. Understanding different stakeholder perspectives on implementation in real-world settings helps to understand uptake, challenges and opportunities. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE?: As the first study to document leadership's perspectives of implementing Let's Talk, this paper contributes to the evidence base on their role in implementing family-focused practice models in mental health. There are specific roles of leadership that need to be addressed to support implementing Let's Talk in changing environments. Leadership's knowledge of Let's Talk and approach to change influences implementation. Questions are raised about the role the readiness of the parent and the impact that the dynamic process between the practitioner and parent has on implementing Let's Talk. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Engaging leadership needs to address the influence of their different organizational roles in shaping implementation for Let's Talk. Further research is needed to understand the dynamic process between parent and practitioner that influences readiness for trialling Let's Talk. ABSTRACT: Introduction Different stakeholder's perspectives are needed to understand challenges and opportunities in implementing and sustaining evidence-based practices (EBP) in real-world settings. Aim/Question To identify leadership perspectives on key elements influencing the process of implementation of Let's Talk about Children (Let's Talk), a family-focused practice for practitioners working with parents diagnosed with a mental illness. Method Semi-structured interviews were conducted with 16 service managers and implementation leads, to establish their views on key elements influencing implementation of Let's Talk during a randomized controlled trial. A thematic analysis applied both inductive and deductive approaches, using the Consolidated Framework for Implementation Research (CFIR). Results Impacts to effective translation to practice were grouped into three broad themes with eight subthemes: inner and outer setting impacting organization, leadership affecting readiness and parent and practitioner readiness. Discussion The findings suggest that specific roles for leadership are vital to implementation within an environment of constant change, and more attention is needed to understand the dynamics of parent and practitioner readiness for delivering Let's Talk. Implications for practice Different leadership roles need to be engaged to sustain Let's Talk in changing real-world environments. The dynamic processes between parent and practitioner are suggested to influence readiness and need further research.

"It's like being stuck on an unsafe and unpredictable rollercoaster": Experiencing substance use problems in a partner.

Living with a partner with substance abuse problems may induce strains in an individual's everyday life, including poor health, disrupted family life, and social isolation; this may lead to dropping out of education or work, a lack of safety and support, and facing various dilemmas and stigma. Aim: The purpose of this study was to explore these partners' everyday life experiences, including their parental roles. Method: A qualitative design comprising qualitative interviews with ten partners and ex-partners was performed, and a thematic analysis was used. Results: The findings demonstrated that sharing their lives, including parenthood, with a partner with substance use problems affected every aspect of the participants' lives, and entailed being influenced by their partner's ups and downs. The overall theme, "being stuck on an unsafe and unpredictable rollercoaster", is explored through three themes: "dilemmas, stigma, and shame", "lack of safety, security, and support," and "searching for hope and meaning." Conclusion: As a result of the negative impact of their circumstances on their everyday lives, these individuals need support to handle the challenges that they face, but often find it difficult to ask for help. Peer support groups seemed helpful in enabling them to find ways out of their situation.

Comparison of the effectiveness of a 12 step substance use recovery program on quality of life.

Substance-related disorders can adversely impact quality of life. This study assessed a 12 step program on health-related quality of life for Iranian individuals seeking to recover from substance use. The study used a quasi-experimental, two group, three stage, pre- and post-test design and collected data at baseline, and at 1 and 3 months' post-intervention. The treatment group comprised 35 participants in a 12 step program with a non-equivalent comparison group of individuals admitted to addiction treatment centers. Physical and mental health quality-of-life domains were assessed using the Short Form 36 Health Survey Questionnaire. The treatment group improved in all aspects of health-related quality of life. The treatment group improved compared to the comparison group for two of eight quality of life dimensions - physical functioning and role limitations due to emotional problems - at 1 month post-intervention. There were additional improvements at 3 months' follow up in six of eight quality-of-life subscales compared to the comparison group. The benefits to quality of life related to mental health recovery extended beyond the treatment program, indicating that the program principles were effectively implemented in daily life.

The silent world of young next of kin in mental healthcare.

BACKGROUND:: Young next of kin to patients with mental health problems are faced with many challenges. It is important to focus on the special needs of children and adolescents as next of kin to ensure their welfare and prevent harm. RESEARCH QUESTIONS:: We aimed to investigate young next of kin's need for information and involvement, to examine the ways they cope with situations involving coercion related to the treatment of their relative, and to identify ethical challenges. RESEARCH DESIGN:: We conducted a qualitative study based on semi-structured, individual interviews. PARTICIPANTS AND RESEARCH CONTEXT:: Seven young next of kin aged 14-22 years participated in the study. The informants were recruited from a regional hospital trust in Norway. ETHICAL CONSIDERATIONS:: The study was approved by the National Data Protection Official for Research and based upon informed consent and confidentiality. FINDINGS:: The adolescents wanted more information and described a need for increased interaction with their sick relative at the hospital. They struggled to keep their relationship with their relative intact, and they described communication problems in the family. Coercive treatment was perceived in a negative way. DISCUSSION:: The study finds that there are ethical challenges at stake for young next of kin and their families other than those that are often emphasized by traditional healthcare, which often focuses on the individual patient's rights. These challenges are related to the young next of kin's needs for interconnectedness and for the preservation of relationships as well as challenges related to family communication and the need for information. CONCLUSION:: The study finds a need for more family-oriented perspectives in both mental healthcare practices and healthcare ethics.

"This is not a Life Anyone would want"-A Qualitative Study of Norwegian ACT Service users' Experience with Mental Health Treatment.

We discuss Norwegian service users' experiences with community mental health treatment in general, and the interprofessional Assertive Community Treatment (ACT) model in particular. To gain the right to treatment, service users have to accept certain limitations, such as medication and community treatment orders (CTOs). Seventy participants responded to five open-ended questions. In addition, eight of them participated in either focus group or interviews. A collaborative approach, using Stepwise-Deductive Induction (SDI) method was used to analyze the participants' experiences. The results showed that the treatment contributes to an experience of autonomy but also one of restriction. It provides service users with enhanced normalcy, but simultaneously a feeling of deviance. There needs to be an ongoing reflection and discussion about those paradoxes in treatment, and service users have to be involved.

Children with ill parents: extent and nature of caring activities.

RATIONALE: Previous studies have shown that children may take on higher extents of caring activities if their parents are affected by severe illness or disability, especially when their parents lack access to formal and informal care. AIMS AND OBJECTIVES: This study examined the extent and nature of caring activities done by patients' children; differences in caring activities between different types of parental illness; factors associated with caring activities. DESIGN: An explorative cross-sectional multicentre study. METHODS: Parents as patients in specialised healthcare services, and their children, were recruited from five health trusts in Norway. The sample included 246 children aged 8-17 years and their 238 parents with severe physical illness (neurological disease or cancer) (n = 135), mental illness (n = 75) or substance abuse (n = 28). MAIN OUTCOME MEASURE: Multidimensional Assessment of Caring Activities (MACA-YC18). RESULTS: A large number of children with ill parents are performing various caring activities. Increased caring activities among children due to their parent's illness were confirmed by their parents, especially with regard to personal care. We found no significant differences in the extent of caring activities between illness types, but there were some differences in the nature of these activities. Factors significantly associated with the extent and nature of caring activities were as follows: better social skills and higher external locus of control among the children; and poorer physical parental health. Parent's access to home-based services was limited. STUDY LIMITATIONS: In recruitment of participants for the study, a sampling bias may have occurred. CONCLUSION: To promote coping and to prevent inappropriate or extensive caring activities among children with ill parents, there is a need for increased access to flexible home-based services adapted to the type of parental illness.

Perceived quality of life in partners of patients undergoing treatment in somatic health, mental health, or substance use disorder units: a cross-sectional study.

BACKGROUND: This study explores (1) differences in socio-demographic, social/familial, and health variables and perceived quality of life (QoL) among partners of patients with somatic illness, mental illness, or substance use disorder (SUD); and (2) identifies factors associated with QoL. METHODS: Participants (N = 213) in this cross-sectional study were recruited from inpatient or outpatient services in five hospitals in Norway, 2013-2014. QoL was measured by the QoL-5, a generic five-item questionnaire. Differences between groups were examined using Chi-square for categorical variables and Kruskal-Wallis for contiuous variables. Multiple linear regression analyses were used to examine factors associated with QoL. RESULTS: The mean QoL score was similar to that of a general population sample, and 13% of the sample had a markedly low QoL. Partners in the SUD group experienced worse socio-demographic conditions in terms of occupation and income, but QoL did not differ significantly among the three groups. In a regression model, perceived family cohesion was positively associated with QoL while psychological distress (Symptom Checklist-10) was negatively related to it. The model explained 56% of the variance in QoL. CONCLUSIONS: When patients are ill, clinicians should consider the partners' QoL, and brief QoL tools can be used to identify those who are struggling most. Reduced QoL is associated with higher psychological distress and lower family cohesion. Treatment initiatives focusing on these themes may serve as preventive measures to help the most vulnerable families cope with their difficult life situation.

Nurses' dilemmas concerning support of relatives in mental health care.

Relatives of persons with severe mental illness face a straining life situation and need support. Exclusion of relatives in mental health care has long been reported. The aim of this study was to describe conceptions of nurses in mental health care about supporting relatives of persons with severe mental illness. Focus group interviews with nurses from all levels of mental health care in Norway were performed. A phenomenographic approach was used. The nurses found that their responsibility first and foremost was the patient, especially to develop an alliance with him or her. Additional premises for supporting relatives were the context framing the nursing care, aspects of the actors, and relational concerns between them. Competing or contradictory demands were found within these premises. Two paths were identified concerning the nurses' support of relatives: seeing the relative in the shadow of the patient or as an individual person.

Life-sharing experiences of relatives of persons with severe mental illness - a phenomenographic study.

Relatives of those suffering from severe mental illness experience multiple challenges and a complex life situation. The aim of this study was to describe life-sharing experiences from the perspective of relatives of someone with severe mental illness. A qualitative, descriptive study was performed, and interviews were carried out with eighteen relatives of persons with severe mental illness. A phenomenographic analysis, according to the steps described by Dahlgren and Fallsberg, was used to describe the relatives' conceptions of their situation. The findings show that the experiences of these relatives can be summarized in one main category: 'The art of balancing between multiple concerns'. Two descriptive categories emerged: 'Making choices on behalf of others and oneself' and 'Constantly struggling between opposing feelings and between reflections'. Relatives report that they have to manoeuvre between different ways to act and to prioritize between different wishes and needs. In addition, they face a wide range of strong feelings and they search for hope and meaning. Relatives of someone with severe mental illness have to balance multiple concerns, which induce ethical dilemmas. They felt love, compassion or sense of duty towards the mentally ill person. The changeable situation made it difficult for the relatives to establish a balance in their lives. To be able to prioritize some private time was important. Relatives need own support and sufficient follow-up of the mentally ill next of kin from the mental health services.

"Left alone with straining but inescapable responsibilities:" relatives' experiences with mental health services.

Relatives of persons with severe mental illness experience burden and straining changes in their lives that put their health at risk. Consequently, they need support from health professionals. The aim of this study was to describe experiences from encounters with mental health services as seen from the point of view of relatives of persons with severe mental illness. A qualitative, explorative study was performed, based on two open-ended questions in a cross-sectional study of relatives' health, burden, and sense of coherence (n = 216). A manifest qualitative content analysis was used to describe the relatives' experiences. The findings show that some relatives had experienced positive encounters with health personnel, but the majority of experiences reported were negative. The encounters can be summarized into one main category: "Left Alone with Straining but Inescapable Responsibilities." Two categories emerged: "Striving for Involvement for the Sake of the Mentally Ill Person," and "Wanting Inclusion for the Sake of Oneself." There is a gap between relatives' needs for support in order to handle their own situation in relation to their mentally ill next of kin, and what they actually receive from the mental health services. The findings suggest that health professionals should collaborate with and support these relatives.