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

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

I have never been invited-A cross-sectional explorative study of family members' experiences of encounters with healthcare professionals in diabetes care.

AIM: To explore the experiences of family members of adult persons with type 1 diabetes concerning both the approach of healthcare professionals and feelings of alienation in encounters with professional diabetes care. METHODS: A cross-sectional explorative quantitative and qualitative design. The Family Involvement and Alienation Questionnaire-Revised (FIAQ-R), including an open-ended question, was answered by 37 family members of adult persons with type 1 diabetes. Analyses included descriptive statistics and qualitative analysis. The study has received ethical approval. RESULTS: Family members rated the approach of the healthcare professionals as being somewhat positive and considered that the approach towards them is important. They only felt partially alienated from the professional care. Qualitative data revealed that the family members often lacked direct access to the professional care and that their involvement was dependent on their relationship with the person with diabetes. Findings highlighted that the family members' wish to be involved in the care was sometimes unanswered. CONCLUSION: Based on the findings, it is reasonable to stress the importance of considering family members' perspectives and involving them in diabetes care to improve overall patient support.

A survey study of family members' encounters with healthcare services within the care of older people, psychiatric care, palliative care and diabetes care.

The aim of this study was to describe and compare family members' experiences of approach in encounters with healthcare professionals and possible feelings of alienation in the professional care within four care contexts: the care of older people, psychiatric care, palliative care and diabetes care. The design was an explorative cross-sectional survey study. Data were collected in Sweden using the Family Involvement and Alienation Questionnaire-Revised (FIAQ-R). It measures family members' experiences of the healthcare professionals' approach and the family members' feeling of alienation from the provision of professional care. A total of 1047 questionnaires were distributed to family members using convenient sampling method, of which 294 were included. Data were analysed using rank-based, non-parametric statistical methods. The results indicated that most respondents experienced a positive actual approach from the healthcare professionals. Many participants rated the importance of approach at a higher level than their actual experience. Participants in the context of diabetes care reported a more negative actual approach from the healthcare professionals than did participants in the other contexts and considered the healthcare professionals' approach towards them as being less important. The results for the entire group indicated that the participants felt a low level of alienation from the professional care. Participants in the context of the care of older people reported significantly lower level of feeling of being alienated than did participants in the contexts of psychiatric care and diabetes care. The differences between participants in diabetes care and other care contexts can possibly be explained by a more fully implemented self-care approach among the patients in diabetes care than in the other care contexts. Even though the results are quite positive, it is still important that nurses consider a family-centred approach to better adapt to the needs of both the family members and the patients.

Relatives' Experiences of Mental Health Care, Family Burden and Family Stigma: Does Participation in Patient-Appointed Resource Group Assertive Community Treatment (RACT) Make a Difference?

The aim of this exploratory cross-sectional study was to investigate the experiences of relatives of individuals with severe mental illness with and without participation in patient-appointed Resource Group Assertive Community Treatment (RACT). A total of 139 relatives (79 with and 60 without RACT) completed the Family Involvement and Alienation Questionnaire, the Burden Inventory for Relatives of Persons with Psychotic Disturbances, and the family version of the Inventory of Stigmatizing Experiences. We found that relatives participating in RACT experienced a more positive approach from the healthcare professionals, as well as a lower degree of alienation from the provision of care. Relatives who did not participate in RACT were more afraid that their ill next of kin would hurt someone. No other differences in family burden were found. Experiences of family stigmatization were similar in both groups. In conclusion, participating in patient-appointed RACT may contribute to a higher level of satisfaction for relatives in their encounter with healthcare professionals and a more positive alliance. Implementation of RACT in new settings would require adaptation to local conditions to facilitate cooperation between healthcare staff and other relevant services. Staff training focuses on the case manager function and needs assessment, as well as how to create an alliance with the patient and his/her relatives.

Parents of adult children with long-term mental disorder: Their experiences of the mental health professionals' approach and feelings of alienation - A cross sectional study.

The aim was to describe how parents of adult children suffering from long-term mental disorder experience the mental health professionals' approach and any feelings of alienation regarding the provision of care. A further aim was to investigate any differences according to the parents' gender or the child's age. 93 mothers and 37 fathers participated. A majority experienced the mental health professionals' approach toward them as being negative and they felt alienated from the professional care. Regardless of the age of the children, parents have a considerable need for a positive approach from the professionals that can enable them to choose how they should act and what they should do, in order to help and support their adult child.

Support Interventions for Family Members of Adults with Mental Illness: A Narrative Literature Review.

The aim of this review was to describe research related to support interventions for adult family members of people with mental illness and the significance that support may have. The results indicate the importance of flexible and individualized forms of support from both professionals and people with personal experience as a family member of someone with mental illness. In many cases, the intervention studies revealed that family members' burden decreased, their knowledge of the disease and treatment increased, and their ability to cope with the situation was improved. The results highlight the importance of support both from professionals and peers.

Adaptation and evaluation of the Family Involvement and Alienation Questionnaire for use in the care of older people, psychiatric care, palliative care and diabetes care.

AIM: To adapt the Family Involvement and Alienation Questionnaire (FIAQ) for use in the care of older people, psychiatric care, palliative care and diabetes care and to evaluate its validity and reliability. BACKGROUND: Involvement in the professional care has proven to be important for family members. However, they have described feelings of alienation in relation to how they experienced the professionals' approach. To explore this issue, a broad instrument that can be used in different care contexts is needed. DESIGN: A psychometric evaluation study, with a cross-sectional design. METHOD: The content validity of the FIAQ was evaluated during 2014 by cognitive interviews with 15 family members to adults in different care contexts. Psychometric evaluation was then conducted (2015-2016). A sample of 325 family members participated, 103 of whom in a test-retest evaluation. Both parametric and non-parametric methods were used. RESULTS: The content validity revealed that the questionnaire was generally understood and considered to be relevant and retrievable by family members in the contexts of the care of older people, psychiatric care, palliative care and diabetes care. Furthermore, the FIAQ (Revised), demonstrated satisfactory psychometric properties in terms of data quality, homogeneity, unidimensionality (factor structure), internal consistency and test-retest reliability. CONCLUSION: The study provides evidence that the FIAQ (Revised) is reliable and valid for use in further research and in quality assessment in the contexts of the care of older people, psychiatric care, palliative care and diabetes care.

An isolated involvement in mental health care - experiences of parents of young adults.

AIMS AND OBJECTIVES: To explore parents' involvement in the informal and professional care of their young adult child with mental illness. A further aim was to examine concepts in the caring theory of 'Involvement in the light-Involvement in the dark' in the context of mental health care. BACKGROUND: Mental illness has increased among young people in high-income countries, and suicide is now the leading cause of death for this group. Because of their disease, these young people may have difficulty in carrying out daily, taken-for-granted, tasks. Consequently, they often become dependent on their parents, and their parents shoulder a considerable responsibility. DESIGN: A secondary descriptive design with a deductive content analysis was used. METHODS: Ten parents who have a son or daughter with long-term mental illness (aged 18-25 years) were interviewed. The deductive analysis was based on the caring theory of 'Involvement in the light-Involvement in the dark'. RESULTS: The results are described using the following concepts in the theory: 'Knowing', 'Doing', 'Being' and 'Attitude of the health professionals'. The result are to a great extent consistent with the 'Involvement in the dark' metaphor, which describes an isolated involvement in which the parents were not informed, seen or acknowledged by the health professionals. Continuous support by professionals with a positive attitude was described as being of decisive importance for meaningful involvement. The theory's transferability is strengthened to the mental health care context. CONCLUSIONS: Parents have a considerable need for knowledge that can enable them to choose how they should act (be) and what they should do, in order to help and support their child. RELEVANCE TO CLINICAL PRACTICE: Since the patient, the family members and the professionals are mutually dependent, it is important to make use of each other's knowledge in a partnership to achieve a common caring strategy.

Health-related quality of life--from the perspective of mothers and fathers of adult children suffering from long-term mental disorders.

There is a lack of studies on mothers' and fathers' experiences of Health-Related Quality of Life (HRQOL) associated with caregiving of adult children suffering from mental disorder. A cross-sectional study was therefore carried out with 108 mothers and 43 fathers. Data were collected by means of the Short Form Health Survey (SF-36), the Hospital Anxiety and Depression Scale (HADS), the Family Involvement and Alienation Questionnaire (FIAQ) and the Burden Assessment Scale (BAS). Mothers' HRQOL was affected more than fathers' and lower compared to Swedish age related norms. HRQOL was predominantly related to ratings on HADS and BAS.

A lonely life journey bordered with struggle: being a sibling of an individual with psychosis.

Research suggests that siblings of individuals with severe mental illness are affected by the situation and that health care services seem to be inadequate in meeting their needs for support. The aim of this study is to explore how siblings of individuals with a psychotic illness, and who have participated in a support group, experience their situation. Thirteen individuals participated in focus group interviews, which were analyzed by inductive content analysis. The findings were interpreted into an overall single theme: A lonely life journey bordered with struggle. This theme consists of three categories: facing existential thoughts, facing ambiguity in approach and engagement, and facing disparate attitudes and expectations.

Attitudes towards mental illness in Sweden: adaptation and development of the Community Attitudes towards Mental Illness questionnaire.

The main purpose for the expansion of supported community care for persons with serious mental illness in Sweden was to ensure the right for these persons to live as citizens in the community. However, earlier research shows that negative attitudes towards mental illness present an obstacle for social integration of persons with serious mental illness. The aim of this study, conducted in Sweden, was to evaluate an existing instrument's (Community Attitudes towards Mental Illness, CAMI), validity and reliability. An additional aim was to adapt and develop the questionnaire to Swedish circumstances. After translation and modification of the original CAMI, the Swedish version of the questionnaire (CAMI-S) was distributed to all student nurses at three different universities in Sweden. The overall Cronbach's alpha coefficient was 0.90 of the original CAMI-S. A corrected inter-item total correlation excluded 20 items because they showed loading <0.43. The overall Cronbach's alpha coefficient on the 20 items (new CAMI-S) that showed loading, >0.43, was 0.903. A factor analysis of these items revealed that the data could be extracted in three factors labelled as: open-minded and pro-integration, fear and avoidance and community mental health ideology. Finally, in order to reach reliable results in attitude research, it is important to measure the respondent's attitude towards the object in common as well as the respondent's attitude to interact with the object. Accordingly, it is important to add behavioural intention items to the 'new CAMI-S'. Statements exemplifying how something 'ought to be' in an impersonal way have a good degree of stability over time and place.

Developing the concept of family involvement and the alienation questionnaire in the context of psychiatric care.

Research shows that family members of people with a mental illness often experience a lack of involvement in the psychiatric care of their relative. An interpretation of the findings of these studies raises the question of whether the family members' experience of not being involved can be conceptualized in terms of alienation towards mental health services from their encounter with psychiatric care. In order to explore this possibility, the Family Involvement and Alienation Questionnaire (FIAQ) was constructed, guided by relevant theoretical frameworks and empirical research. The content validity of the questionnaire was evaluated by two groups of experienced researchers who had sound knowledge of the theoretical frameworks used. Validity based on the response process was evaluated by the parents of people with mental illness. The reliability of the questionnaire was evaluated by a test-retest design with a group of 15 family members. The data were analyzed by a non-parametric statistical method. The results of the validity and reliability evaluations showed that of the 46 original items in the questionnaire, 28 would be useful in exploring the concept of family involvement and alienation in the context of psychiatric care. Further, minor modifications could make the FIAQ useful in exploring these concepts in other settings.