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.

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.

Purpose: The purpose was to investigate family members’ experiences of the healthcare professionals’ approach and feeling of alienation in nursing homes.

Methods: This study had a cross-sectional design collecting data from seven nursing homes in Sweden using the Family Involvement and Alienation Questionnaire - Revised (FIAQ-R). The final sample consisted 133 family members (response rate 42.6%). Data were analyzed with a variety of rank-based, non-parametric statistical methods.

Results: Family members in general experienced a positive approach from the healthcare professionals and considered that as being of the very highest importance. This could be explained by the skewed sociodemographic characteristics of the sample. The concept of continuity generated the most comments of a negative character indicating the importance of organizational factors in nursing homes.

Conclusion: The results indicate the need to improve continuity in the care of older persons in nursing homes by limiting the amount of different health care professionals surrounding the older person. Also, it highlights the importance of having a specific contact person assigned to each older person living in nursing homes.

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.

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.

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.

AIM: To adapt the Family Involvement and Alienation Questionnaire 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 Family Involvement and Alienation Questionnaire 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 Family Involvement and Alienation Questionnaire (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 Family Involvement and Alienation Questionnaire (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. This article is protected by copyright. All rights reserved.

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.

AIM: The aim of this study was 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 AND METHODS: A secondary descriptive design with a deductive content analysis was used. Ten parents who have a son or daughter with long-term mental illness (aged 18 - 25) 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. This article is protected by copyright. All rights reserved.

Bakgrund: Vid Nationellt kompetenscentrum anhöriga (Nka) har man sedan starten år 2008 arbetat med metoden Blandade lärande nätverk (BLN). Syftet med BLN är att bidra till kunskaps- och erfarenhetsutbyte mellan deltagare samt att generera utvecklingsarbeten inom området anhörigstöd och vård/omsorg i medverkande kommuner. Totalt har 17 nationella BLN genomförts, med tillhörande 125 lokala nätverk. De lokala nätverken är sammansatta av ca tio personer i olika målgrupper; anhöriga, personal i vård/omsorg, ledare/chefer i vård/omsorg, politiker och personer i idéburna organisationer. Vid utvärdering av fyra nationella BLN år 2009, med 25 tillhörande lokala nätverk, framkom att det skett en tydlig kunskapsutveckling hos såväl deltagarna som ledarna. Arbetsmetoden skapade en bra förutsättning för kunskaps- och erfarenhetsutbyte. I flera kommuner hade utvecklingsområden inom anhörigstödet identifierats och konkreta exempel på förändringar påbörjats. De kortsiktiga målen med BLN var i stort sett uppfyllda. De långsiktiga målen var svårbedömda då tidsperspektivet för nätverkens arbete var kort. Sedan utvärderingen år 2009 har ytterligare 13 nationella BLN slutförts. För att få ökad kunskap om i vilken omfattning och på vilket sätt BLN både kort- och långsiktigt kan bidra till evidensbaserade förändrings- och utvecklingsarbeten gällande anhörigstöd är det angeläget att ytterligare utvärderingar genomförs. Under år 2015 genomförs därför utvärderingar utifrån olika perspektiv, varav föreliggande studie är en av dessa.

Syfte: Studien syftar till att inhämta kunskap för att beskriva i vilken omfattning och på vilket sätt arbetet bidragit till att målen för BLN uppnåtts, såväl kortsiktigt – som långsiktigt samt på individuell- och kommunal nivå. Kortsiktiga mål på individuell nivå avser: – Att alla fått göra sin röst hörd, att medverkan i BLN bidragit till – Ökad kunskap och medvetenhet om den egna situationen, – Ökad kunskap och medvetenhet om de andra gruppernas situation, – Att områden identifierats att utveckla eller förändra. Kortsiktiga mål på kommunal nivå avser: att medverkan i BLN bidragit till – Ökad kunskap om anhörigas situation i kommunen, och – Att områden identifierats att utveckla eller förändra för att stödja anhöriga. Långsiktiga mål på individuell nivå avser: att medverkan i BLN bidragit till – Att situationen förändrats. Långsiktiga mål på kommunal nivå avser: att medverkan i BLN bidragit till – Att det i kommunen initierats eller genomförts förbättrings- eller utvecklingsarbeten för att stödja anhöriga, och – Ökat kvalitén på anhörigstödet.

Metod: Föreliggande studie avser utvärdering av två nationella BLN, med tillhörande 16 lokala nätverk, som avslutades andra halvåret 2014 och under år 2015. Nätverkens teman var ”Stöd för vuxna anhöriga till personer med psykisk ohälsa” och ”Att möta anhörigas känslor och existentiella behov”. Ett för ändamålet utvecklat frågeformulär sändes till samtliga deltagare i samband med att BLN avslutades samt ytterligare ett uppföljande frågeformulär sändes sex månader därefter. Vid första undersökningstillfället, i samband med att BLN avslutades, deltog 109 personer och vid andra tillfället, sex månader därefter, deltog 58 personer. Vid båda tillfällena var det en övervägande del kvinnor som deltog och en majoritet var anhöriga samt personal inom vård- och omsorg.

Resultat: Resultat från första undersökningstillfället i samband med att BLN avslutades. När det gäller kortsiktiga mål på individuell nivå svarade en majoritet att alla i gruppen (95 %) och att de själva (97 %) hade kommit till tals samt getts möjlighet att delge sina erfarenheter/kunskaper vid nätverksträffarna. En majoritet anhöriga (82 %) och personal inom vård/omsorg samt nätverksledare (79 %) svarade att de fått ny kunskap/nya insikter i sin egen situation. Vilket var mindre förekommande bland ledare/chefer och politiker (47 %). När det gäller om medverkan i BLN bidragit till ny kunskap/nya insikter om andra gruppers situation framkom att en majoritet av deltagare i samtliga grupper fått ny kunskap/nya insikter om anhörigas situation. Likaså svarade en klar majoritet att de fått ny kunskap/nya insikter om vård- och omsorgspersonalens arbete med stöd för anhöriga. Drygt hälften av deltagarna hade fått ny kunskap/nya insikter om beslutfattarnas målsättning med stöd för anhöriga. En majoritet hade identifierat områden att utveckla eller förändra. I något högre omfattning bland ledare/ chefer, politiker och personer i idéburna organisationer än i övriga grupper. Medverkan i BLN hade för en majoritet bidragit till förbättringar. I högre omfattning för personal inom vård/omsorg och lokala nätverksledare än för övriga grupper. När det gäller kortsiktiga mål på kommunal nivå svarade en majoritet att arbetet i BLN bidragit till ny kunskap/insikt om anhörigas situation i kommunen (63 %) och att det i kommunen identifierats områden att förbättra eller utveckla för att stödja anhöriga (54 %). Var tredje deltagare svarade att arbetet i BLN bidragit till att det initierats eller genomförts förbättrings- eller utvecklingsarbeten i kommunen för att stödja anhöriga. Resultat från andra undersökningstillfället sex månader efter BLN avslutats. När det gäller Långsiktiga mål på individuell nivå framkom att medverkan i BLN för en majoritet av deltagarna hade bidragit till att de i hög grad eller i viss mån hade identifierat sådant som behöver förbättras i deras egen situation. I högre omfattning för personal inom vård/omsorg och nätverksledare än för övriga grupper. För en majoritet av anhöriga (53 %) och för personal i vård/omsorg (83 %) hade medverkan i BLN bidragit till förbättringar av den egna situationen. I lägre omfattning hade det bidragit till förbättringar för ledare/chefer, politiker och person i idéburen organisation (44 %). När det gäller Långsiktiga mål på kommunal nivå svarade en majoritet av deltagarna att medverkan i BLN hade bidragit till ny kunskap/insikt om anhörigas situation i kommunen (67 %) och att det i kommunen identifierats områden att förbättra eller utveckla för att stödja anhöriga (55 %). I något lägre omfattning (47 %) svarade deltagarna att det initierats eller genomförts förbättrings eller utvecklingsarbeten i kommunen för att stödja anhöriga. En klar majoritet (85 %) bedömde att förbättrings- eller utvecklingsarbetet i kommunen kan leda till eller har ökat kvalitén på anhörigstödet.

Konklusion: I utvärderingen framkom att det skett en kunskapsutveckling hos deltagarna. Arbetsmetoden skapade förutsättningar för kunskaps- och erfarenhetsutbyte. Målen för BLN hade i stort uppnåtts, såväl kortsiktigt- som långsiktigt samt på individuell- och kommunal nivå. I flera kommuner hade utvecklingsområden inom anhörigstödet identifierats och konkreta exempel på förbättringar påbörjats. Utvärderingen visar att BLN är en arbetsmetod som är betydelsefull för att genomföra förbättrings- och utvecklingsarbeten inom vård/omsorg och anhörigstöd på såväl individuellt som på kommunal nivå.