Bente M. Weimand

Burden and health in relatives of persons with severe mental illness: a Norwegian cross-sectional study.

This study describes and investigates burden to and health of relatives of persons with severe mental illness in relation to background variables, everyday life with the mentally ill person, and sense of coherence. A cross-sectional design was used. The respondents were 226 relatives from the Norwegian National Association for Families of Mentally Ill Persons. In addition to background variables and variables about everyday life with the mentally ill person, the questionnaire was comprised of the Burden Assessment Schedule (BAS), Short Form Health Survey (SF-36), and Sense of Coherence Instrument (SOC). This study shows that the relatives were burdened and also reported poor health. Greater burden was experienced by women and by relatives who did not have anyone with whom to share the caregiving of the mentally ill person. For relatives who were single, divorced, or widowed, burden was greater and health was poorer; likewise for relatives who reported financial problems and frequent phone calls with the mentally ill person. Burden and poor health were associated with low SOC. The findings suggest a need for the health services to include and support these relatives in order for them to sustain health.

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.

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.

T243. RESOURCE GROUP-ACT: RELATIVES’ PERSPECTIVES

Abstract Background Relatives often take on great responsibility for helping the patient in his or her daily life, and many relatives experience lack of support from health care services. Cooperation with relatives is a central component in Resource groups Assertive Community Treatment (R-ACT). This person-centered model has been found to decrease symptoms, increase level of function, and strengthen well-being in patients with psychotic disorders. However, little is known about relatives’ experiences of the model. Aim To examine relatives experiences of R-ACT. Further, to compare relatives’ experiences of treatment and feelings of being alienated from care services in relatives’ with and without experience of R-ACT. We hypothesize higher levels of family burden, and family stigma and lower quality of life in relatives without R-ACT. Design Cross-sectional study focusing on relatives of persons with psychotic disorders during the period of October 1, 2017 – May 31, 2018. Participants Relatives of next of kin suffering from psychotic disorders, treated in health care clinics with and without R-ACT in Västra Götaland County in Sweden. Measurements The postal questionnaire includes four self-reported instruments: the Family Involvement and Alienation Questionnaire, the Burden Inventory for Relatives of Persons Psychotic Disturbances, the Inventory of Stigmatizing Experiences (family version), and RAND-36. Results Recruitment is ongoing. Preliminary results will be presented at the conference. Discussion Increased knowledge about relatives’ experiences of psychosis care can inform the development of R-ACT, a care model that focuses on participation of both patients and their relatives.

Families in Assertive Community Treatment (ACT) Teams in Norway: A Cross-Sectional Study on Relatives’ Experiences of Involvement and Alienation

International research shows that relatives of people with mental illness are rarely involved by mental health services. Assertive Community Treatment (ACT) has been recently implemented in Norway. The experience of relatives of ACT users is largely unknown. The aim of this study was to explore relatives’ experience with ACT-teams in Norway. Data were collected using the family involvement and alienation questionnaire, consisting of experiences of approach, and alienation from the provision of professional care. 38 Relatives participated in this study. A majority experienced a positive approach (openness, confirmation, and cooperation) from the ACT teams, which also was considered better compared to previous services. They considered openness and cooperation as essential aspects from the professionals. Almost half did not feel alienated (powerlessness and social isolation). Higher level of being approached positively was significantly associated with lower level of feeling alienated. The knowledge of what constituted relatives’ positive experiences with the ACT teams should be transferred into practice regarding how to form a positive alliance with relatives.

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.