Från maktlöshet till empowerment : upplevelser av att vara närstående till en person med borderlinepersonlighetssyndrom/ emotionell instabilt personlighetssyndrom, bemötandet från hälso- och sjukvården, deras behov av stöd och känsla av empowerment
Authors:   , Ekdahl Susanne 
Published: September 2024

Being a significant other to a person with borderline personality disorder affects life in several ways. Stress, depression, anxiety and a heavy family burden arecommon, as well as feelings of shame and guilt, depowerment and stigmatisation. Support from health care in Sweden is available, albeit to a limited extent. One explanation is that in order to be offered support from health care, in most cases, persons with borderline personality disorder are assumed to be under treatment. This issue, in combination with limited resources, excludes a large group of significant others. Previous research has emphasized the need for development of further support for this group. Support should include knowledge regarding the diagnose, how to decrease family burden and stigmatisation, and focus on increasing empowerment.The overall aim of this thesis was to describe experiences of being a significant other to a person with borderline personality disorder, their needs and experiencesof support, and their sense of empowerment. The thesis consisted of four studies. Studies I, III and IV had a qualitative design, and study II had a descriptive mixed method design. All four studies were analyzed with qualitative content analyses. In the second study descriptive inferential statistics were used for the quantitative section. The first study aimed to explore significant others’ experiences of living close to someone with borderline personality disorder and their encounters with health care. A semistructured questionnaire was used followed by group interviews. The next study aimed to describe significant others’ experiences of a healthcare-providedsupport known as family skills training, their life situation before and after support, and measuring their levels of anxiety and depression symptoms beforeand after completed group participation. A semi-structured questionnaire was used and followed up by group interviews in the qualitative section. In the quantitative section the hospital anxiety and depression scale were used. The third study aimed to focus on experiences and need of support from the perspective ofsignificant others themselves and of health care professionals. Two focus group interviews were carried out in each group. The fourth study aimed to illustrate significant others’ sense of being empowered after participation in an empowerment-based support group with the help of individual interviews.The results from all four studies described how significant others’ both physicaland mental wellbeing were adversely affected due to their role. A poor encounterfrom health care professionals created feelings of hopelessness andstigmatisation, and the need for support was crucial. The poor encounter seemedto be associated with a lack of knowledge However, the support described instudies II and IV showed promising results. The time spent in the support groupsseemed to strengthen the significant others in a positive way, and their feelingsof empowerment increased. Studies I and III highlighted peer support organisedas an association specially for significant others as an important support effort. Instudy III one concrete example of support was spoken of in terms of aprofessional coordinator, with special knowledge regarding the significantothers’ situation and needs.Two findings emerged from the overall results. Firstly, it appears to be importantto offer correct support, at the right level and at the right time. Secondly,acceptance may play an important role when it comes to increased empowerment.These findings indicate the importance of various types of support efforts wheresignificant others can choose support efforts based on their specific needs. The conclusion of this thesis emphasises two areas that would benefit by further development. The first area includes development of increased knowledge for health care professionals where two measures are suggested: 1) development of a knowledge support regarding borderline personality disorder and its effects onsignificant others, 2) updating the Swedish clinical guidelines regarding the careof persons with borderline personality disorder from the perspective of significantothers. The second area includes the need of extended support for significant others. Three measures are suggested for development: 1) empowerment-basedpeer support groups, 2) a professional coordinator and 3) a digital platform with the possibility to choose support efforts based on the significant others specificneeds at the time. With support from the results of this thesis it is recommended that the measures regarding both areas are to be furthered examined.