| 1. |
- Andersson, Klara, et al.
(författare)
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Multiple stigma among first-generation immigrants with epilepsy in Sweden
- 2021
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Ingår i: Epilepsy and Behavior. - : Elsevier BV. - 1525-5050. ; 115
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To investigate the meaning of stigma among first-generation immigrants with epilepsy in Sweden. Methods: Data were collected by individual face-to-face interviews with 25 first-generation immigrants with epilepsy from 18 different countries. Interviews were recorded, transcribed verbatim, and analyzed systematically using a hermeneutic approach. Results: Multiple aspects of stigma were associated with epilepsy, immigration, and socioeconomic deprivation. The main theme “It is a fight to be appreciated as a person and member of society” illuminated the meaning of stigma in the struggle with a negative self-image and strategies to build self-confidence. The seizure-related fears were amplified by language barriers and a lack of knowledge of the healthcare system that obstructed access to health care. Few close relatives nearby or misconceptions of epilepsy in the family resulted in a lack of support. The stigma of being an immigrant and of socioeconomic deprivation resulted in feelings of being unvalued by the society in addition to feelings of being unvalued in relationships and at work because of epilepsy. The social isolation experienced as a result of immigration was increased due to the presence of perceived stigma due to epilepsy which led people to stay at home in order to conceal their epilepsy. At the same time, to inform others about their epilepsy could reduce seizure-related fears. Employment appeared as a symbol of being a capable person and helped participants gain self-confidence. Conclusions: Barriers to access health care and the exposure to multiple stigma can result in increased seizure-related fears, social isolation, and a lack of support for immigrants with epilepsy. In the context of epilepsy and immigration, stigma was intricately connected to how people perceived themselves as capable and contributing members of society. To reduce the negative influence of stigma, employment appeared vital to build self-confidence and break social isolation. Investigating the patient's experience of stigma may provide healthcare professionals with valuable information on the need for support and priorities in epilepsy management. Public efforts to increase knowledge about epilepsy also among first-generation immigrants would be valuable. © 2020 Elsevier Inc.
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| 2. |
- Andersson, K., et al.
(författare)
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Trustful communication in the medical encounter: Perspectives of immigrated people with epilepsy
- 2021
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Ingår i: Chronic Illness. - : SAGE Publications. - 1742-3953 .- 1745-9206. ; 17:3, s. 159-172
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Tidskriftsartikel (refereegranskat)abstract
- Background: Foreign-born people with epilepsy carry two mutually independent risk factors for poor health. While epilepsy increases the need for trust and clear communication, minority status presents additional barriers in communication, causing misconceptions, inadequate treatment and increased suffering. Objectives: This study aimed to explore experiences of communication in the medical encounter from the perspectives of foreign-born people with epilepsy. Methods: A qualitative approach was applied. Twenty semi-structured in-depth interviews were conducted, recorded, transcribed verbatim and analyzed using manifest and latent content analysis. Results: Within the main theme, “Trustful communication in unpredictable terms of life,” three subthemes appeared: “Social struggle overshadowing the epilepsy condition”; “Reliable health consultations as a key to feeling safe” and “Addressing ‘the real problem’ in the medical encounter.” A reduced social network due to migration, together with fears related to epilepsy, seems to increase the need for immediate access to health consultations and the need to be listened to. Patients’ narratives shed light on multiple social, medical and psychological events that may present reasons for the lack of medical adherence or missed booked appointments. Discussion: A respectful approach, listening and confirming the normalcy of epilepsy events seem fundamental for trustful communication in the context of epilepsy, regardless of a patient’s culture or country of origin. © The Author(s) 2019.
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| 3. |
- Henoch, Ingela, 1956, et al.
(författare)
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Digital health support - a good thing, but not for me. Experiences of family caregivers and healthcare staff
- 2023
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Ingår i: British Journal of Guidance & Counselling. - : Informa UK Limited. - 0306-9885 .- 1469-3534. ; 51:1, s. 150-161
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Tidskriftsartikel (refereegranskat)abstract
- There is an increased belief in the benefits of information and communication technologies (ICT) in healthcare, but the perceived benefits of ICT in family caregiver support need to be explored. This qualitative interview study aimed to describe how family caregivers and healthcare staff in COPD care experience ICT. The results showed that both family caregivers and staff had limited interest in ICT and stated that it might be better for a new generation but not for themselves. Both groups preferred face-to-face meetings instead of contact via ICT. Meeting the needs of an ageing population will require that health services adopt new technologies. Still, the importance of eye contact must not be underestimated, particularly when encountering fragile patients and their spouses.
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| 4. |
- Schenell, Ramona, 1978, et al.
(författare)
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Residents' and family members' perceptions of care quality and self-determination in palliative phase in residential care.
- 2020
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Ingår i: Palliative & supportive care. - 1478-9523. ; 18:1, s. 69-81
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Tidskriftsartikel (refereegranskat)abstract
- Dependency on others can compromise self-determination for older persons in the palliative phase in residential care. Family members can support the residents' self-determination but may also jeopardize it. Quality of care (QoC) is linked to respecting the autonomy of the residents and providing opportunities to participate in decision-making. The aim of the study was to provide knowledge about residents' and family members' perceptions of QoC and self-determination and to detect possible differences between their experiences.This cross-sectional study used an abbreviated version of the questionnaire, Quality from the Patients' Perspective, with additional items about decision-making. Wilcoxon's signed rank test was used to analyze the perception of QoC and to detect differences between residents' and family members' perceptions.QoC was perceived as lower than preferred in the majority of items and there was a high level of agreement between residents and family members. Lowest mean values in QoC were found in: support when feeling lonely; support when feeling worry, anxiety or fear; and staff's time to talk to the residents. Decision-making in everyday life and in life-changing situations showed that neither residents nor family members trusted staff to know about the residents' preferences.Broad improvements are needed, especially in psychosocial care. Several of the negative outcomes on QoC and self-determination seem to derive from a focus on practical tasks and the lack of trustful relationships between residents and staff. An early implementation of palliative care, with a focus on what brings quality to each resident's life, could facilitate QoC and self-determination, in both everyday life and at the end of life.
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| 5. |
- Schenell, Ramona, 1978, et al.
(författare)
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Struggling for a Dignified Life: The Meaning of Self-Determination in Palliative Phase in Residential Care
- 2020
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Ingår i: International journal for human caring. - 1091-5710. ; 24:2, s. 147-157
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Tidskriftsartikel (refereegranskat)abstract
- o understand the meaning of self-determination in residential care, as experienced by residents in the palliative phase, a hermeneutic approach was used to analyze 20 interviews. The results showed that lacking self-determination threatened the residents' experiences of living a dignified life. Bodily decline and dependency forced residents to adapt to new circumstances, making them experience changes in self-image, loneliness, a loss of influence over their lives, and a diminishing of their needs. To navigate this new situation, they strove to keep control over their lives, held on to their identities, and accepted help from trusted persons.
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| 6. |
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| 7. |
- Schenell, Ramona, 1978, et al.
(författare)
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To make and execute decisions throughout life: A person-centred model that facilitates self-determination in residential care, developed through participatory research
- 2020
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Ingår i: Applied Nursing Research. - : Elsevier BV. - 0897-1897. ; 55
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Tidskriftsartikel (refereegranskat)abstract
- Aim: The aim of the study was to develop a model that facilitates self-determination in residential care. Background: The right to decide on one's own life is self-evident to most adult persons. Nevertheless, dependency on others and the routine-based care that sometimes is provided in residential care, limit the residents' possibilities of self-determination. Methods: The study had a participatory research design using appreciative inquiry in focus group discussions with staff, residents, and care managers. The research process and the model were audited by two expert groups: a scientific reference group and a dementia-specialist reference group. A theoretical framework of relational autonomy and person-centred care was also used. Results: By combining practical and theoretical knowledge, the model “To make and execute decisions throughout life” was developed. The core message of “In my way, at my pace, with the help of you” was reinforced by the categories “See me as a competent person”, “Show me professional consideration”, “Meet me in a trustful relationship”, “Give me opportunity to a meaningful and safe day”, “Support me in being independent”, “Let me have power over my own life”, and “Help me to plan my end-of-life care”. Conclusion: The model “To make and execute decisions throughout life” provides a base for a person-centred approach to care. By reflecting on the core message and the different categories in the model, staff can be inspired to see their own contribution to the residents' self-determination and find ways to facilitate it despite the many obstacles. © 2020 The Authors
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