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

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AimTo 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.MethodsA 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.ResultsFamily 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.ConclusionBased 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.

Section: Discussionsupporting

confidence: 93%

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

Kneck

Ewertzon

Leksell

et al. 2023

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“…Mental illness are often devastating for both the persons experiencing symptoms and for their significant others (SOs) [1][2][3][4][5] For instance, SOs to persons with schizophrenia and bipolar disorder have reported significantly higher levels of stress, anxiety, depression and family burden than the general population [4] Further SOs to persons with mental illness experienced higher levels of alienation from professional care than SOs to persons in elderly and palliative care [6]. Similar aspects were reported for SOs to persons with borderline personality disorder (BPD) as well as a high incidence of substance use disorders, post-traumatic stress disorder and fear [5,7].…”

Section: Introductionmentioning

confidence: 99%

Need of support for significant others to persons with borderline personality disorder–A Swedish focus group study

Ekdahl,

Carlson,

Idvall

et al. 2023

BackgroundBeing a significant other (SO) to a person with borderline personality disorder (BPD) affect their health. High incidence of substance use disorder, post‐traumatic stress disorder, stress, fear, anxiety, depression, family burden and grief are common. Some specific therapies for BPD, have included support to SOs, however resources are scarce and to participate in the support it assumes that the person with BPD is included in these therapies. Although the SO support has been shown to be helpful, they all have a similar structure, and only a small exclusive group of SOs have access to the support.AimThe aim was to describe experiences and need of support for significant others to persons with borderline personality disorder from the perspective of themselves and of health care workers.MethodsData was collected via two focus groups. One with five SOs to persons with BPD, one with five health care workers. Two interview sessions in each group were conducted and data were analysed with qualitative content analysis. The study was approved by the research ethics committee of Lund (2016–1026).ResultsThe results revealed four themes; not being seen by health care professionals creates hopelessness, being seen by healthcare professionals creates trust, experience of support ‐ helpful or shameful and the step from loosely structured support to a structured support group. Both groups expressed a need for further support as a complement to already existing support.ConclusionsThe need of support is extensive. The results suggest a professional coordinator intended for SOs and peer support groups not linked to a particular psychiatric treatment yet offering support in a structured way. Further studies examining these complements to existing support, is therefore recommended.

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

Momeni

Årestedt

Alvariza

et al. 2022

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.