| 1. |
- Strang, P., et al.
(author)
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Existential pain--an entity, a provocation, or a challenge?
- 2004
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In: J Pain Symptom Manage. - : Elsevier BV. - 0885-3924. ; 27:3, s. 241-50
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Journal article (peer-reviewed)abstract
- "Existential pain" is a widely used but ill-defined concept. Therefore the aim of this study was to let hospital chaplains (n=173), physicians in palliative care (n=115), and pain specialists (n=113) respond to the question: "How would you define the concept existential pain?" A combined qualitative and quantitative content analysis of the answers was conducted. In many cases, existential pain was described as suffering with no clear connection to physical pain. Chaplains stressed significantly more often the guilt issues, as well as various religious questions (P<0.001). Palliative physicians (actually seeing dying persons) stressed more often existential pain as being related to annihilation and impending separation (P<0.01), while pain specialists (seeing chronic patients) more often emphasized that "living is painful" (P<0.01). Thirty-two percent (32%) of the physicians stated that existential suffering can be expressed as physical pain and provided many case histories. Thus, "existential pain" is mostly used as a metaphor for suffering, but also is seen as a clinically important factor that may reinforce existing physical pain or even be the primary cause of pain, in good agreement with the current definition of pain disorder or somatization disorder.
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| 2. |
- Strang, Susann, 1953, et al.
(author)
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Experience of Guilt and Strategies for Coping with Guilt in Patients with Severe COPD: A qualitative interview study
- 2014
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In: Journal of Palliative Care. - : SAGE Publications. - 0825-8597 .- 2369-5293. ; 30:2, s. 108-115
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Journal article (peer-reviewed)abstract
- Guilt is associated with an increased level of mood disturbance and a poorer quality of life. The aim of this study was to explore how patients with severe COPD view and experience guilt and the ways in which they cope with this guilt. A total of 31 COPD patients were interviewed about their perceptions and experiences of guilt. Qualitative content analysis was used to examine the interviews. In the descriptive (manifest) analysis, the categories "not feeling personal guilt" and "experiencing guilt" emerged; in the interpretative (latent) analysis, various strategies for dealing with guilt were identified for example, acceptance or blaming others. Relatively few patients reported that they felt guilt on a conscious level, but those who did expressed anguish, and remorse before God; some felt blamed by others. It is important that healthcare providers acknowledge the guilt that their patients express, since guilt may have adverse effects on the patients' overall health.
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| 3. |
- Strang, Susann, 1953, et al.
(author)
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Family Caregivers' Heavy and Overloaded Burden in Advanced Chronic Obstructive Pulmonary Disease
- 2018
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In: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 21:12, s. 1768-1772
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Journal article (peer-reviewed)abstract
- Background: Due to severe symptoms and poor prognosis in advanced cases, chronic obstructive pulmonary disease (COPD) is today seen as a palliative diagnosis. The everyday lives of patients as well as their relatives are restricted and affected by significant psychosocial problems. Objective: To obtain detailed knowledge about people's experiences, for example, transitions in relationships, responsibility, and possible changes in communication, caused by the illness. Design: This is a qualitative interview study using both focus group interviews and individual interviews. Setting/Subjects: In total, 35 family members with personal experience of living with a person with severe COPD were interviewed. Measurements: The semistructured interviews were audio-recorded, transcribed verbatim, and analyzed with a qualitative content analysis. Results: Three themes emerged: (1) A restricted everyday life. The family caregivers felt confined to their own home, they had to be constantly attentive, and their lives became increasingly restricted. (2) A changed relationship. There was a shift in responsibility and their mutual communication. The family caregivers' own needs were neglected and the relationship was affected. (3) Joy through adaption. Still, caregivers strived for normality and, through gradual adaption, they could still experience joy. Conclusions: Being a family caregiver is a burdensome and complex situation. Besides providing practical help, the family caregiver needs to support the ill person. Roles and communication patterns are changed. Healthcare staff must identify the needs of the family caregivers. A family caregiver who feels acknowledged and confident can support their severely ill family member.
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| 4. |
- Strang, Susann, 1953, et al.
(author)
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Palliative care in COPD-web survey in Sweden highlights the current situation for a vulnerable group of patients.
- 2013
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In: Upsala journal of medical sciences. - : Uppsala Medical Society. - 2000-1967 .- 0300-9734. ; 118:3, s. 181-6
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Journal article (peer-reviewed)abstract
- Abstract Background. Chronic obstructive pulmonary disease (COPD) is a common cause of death. Despite the heavy symptom burden in late stages, these patients are relatively seldom referred to specialist palliative care. Methods. A web-based survey concerning medical and organizational aspects of palliative care in COPD was distributed to respiratory physicians in Sweden. There were 93 respondents included in the study. Results. Palliative care issues were regularly discussed with the patients according to a third of the respondents. About half of the respondents worked in settings where established routines for co-operation with palliative units were available at least to some extent. Less than half of the respondents (39%) were aware of current plans to develop palliative care, either as a co-operative effort or within the facility. Palliative care is focused on physical, psychological, social, and existential dimensions, and the proportions of respondents providing support within these dimensions, 'always' or 'often', were 83%, 36%, 32%, and 11%, respectively. Thus, to treat the physical dimensions was perceived as much more obvious than to address the other dimensions. Conclusions. The survey indicates that the priorities and resources for palliative care in COPD are insufficient in Sweden. The data, despite limitations, reveal a lack of established team-work with specialized palliative care units and actual plans for such co-operation.
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| 5. |
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| 6. |
- Strang, Susann, 1953, et al.
(author)
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Support to informal caregivers of patients with severe chronic obstructive pulmonary disease: A qualitative study of caregivers' and professionals' experiences in Swedish hospitals
- 2019
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In: BMJ Open. - : BMJ. - 2044-6055. ; 9
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Journal article (peer-reviewed)abstract
- Objectives Informal caregivers of patients with chronic obstructive pulmonary disease (COPD) experience a heavy caregiver burden, but few studies have explored what support they need. The aim of this study was to describe perceptions of healthcare support to informal caregivers, both from the family caregiver's and the staff's perspective. Design A qualitative interview study involving semi-structured interviews and analysed with content analysis. Participants In total, 54 participated: 36 informal caregivers of patients with severe (stage 3-4) COPD and 17 healthcare staff. Results Two main themes emerged from the analysis: (1) Ambiguity impedes provision of support. Both caregivers and staff experienced ambiguity. The informal caregivers needed emotional, practical and informational support but talked about unclear expectations, while the staff described an uncertainty about their duties regarding the families. There were no routines to unburden the families. Moreover, language and cultural barriers hampered their efforts. (2) Knowledgeable and perceptive communication is key to support. Both caregivers and staff described positive experiences of dialogue. The dialogue may facilitate means to caregiver support and was a support in itself. Conclusions Our findings suggest that strategies and routines for caregiver support, including communication skills among the staff, should be developed, to move toward the family perspective advocated in palliative- and nursing family care.
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| 7. |
- Andersson, Klara, et al.
(author)
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Multiple stigma among first-generation immigrants with epilepsy in Sweden
- 2021
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In: Epilepsy and Behavior. - : Elsevier BV. - 1525-5050. ; 115
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Journal article (peer-reviewed)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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| 8. |
- Andersson, K., et al.
(author)
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Trustful communication in the medical encounter: Perspectives of immigrated people with epilepsy
- 2021
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In: Chronic Illness. - : SAGE Publications. - 1742-3953 .- 1745-9206. ; 17:3, s. 159-172
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Journal article (peer-reviewed)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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| 9. |
- Browall, Maria, et al.
(author)
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Existential encounters: Nurses' descriptions of critical incidents in end-of-life cancer care
- 2014
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In: European Journal of Oncology Nursing. - : Elsevier BV. - 1462-3889 .- 1532-2122. ; 18:6, s. 636-644
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Journal article (peer-reviewed)abstract
- Nurses working with cancer patients in end of life care need to be prepared to encounter patients' psychosocial and spiritual distress. Aim: The aim of this study was to describe nurses' experiences of existential situations when caring for patients severely affected by cancer. Methods and sample: Nurses (registered and enrolled) from three urban in-patient hospices, an oncology clinic and a surgery clinic and a palliative homecare team were, prior to the start of a training program, invited to write down their experiences of a critical incident (CI), in which existential issues were featured. Results: Eighty-eight CIs were written by 83 nurses. The CIs were analyzed with qualitative content analysis. Two main themes were found: Encounters with existential pain experiences, which concerned facing death and facing losses; and Encountering experiences of hope, which concerned balancing honesty, and desire to live. Conclusions: This study points out that health care professionals need to be aware of patients' feelings of abandonment in exposed situations such as patients' feelings of existential loneliness. That there are some patients that express a desire to die and this makes the nurses feel uncomfortable and difficult to confront these occurrences and its therefore important to listen to patients' stories, regardless of care organization, in order to gain access to patients' inner existential needs.
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| 10. |
- Browall, Maria, 1963, et al.
(author)
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Health care staff's opinions about existential issues among patients with cancer.
- 2010
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In: Palliative & supportive care. - : Cambridge University Press. - 1478-9523 .- 1478-9515. ; 8:1, s. 59-68
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Journal article (peer-reviewed)abstract
- OBJECTIVE: The objective of this study was to explore health care staff's opinions about what existential issues are important to patients with cancer and staff's responsibility when existential issues are raised by patients. METHOD: Four focus group interviews were conducted with health care staff (N = 23) at an in-patient hospice, on an oncology ward, on a surgical ward, and with a palliative home health care team. The focus group interviews focused on two questions, first, about health care staff's opinions about patients' important existential questions and, second, about health care staff's responsibility when existential issues are raised by the patient. The interviews were tape-recorded, transcribed verbatim, and analyzed by qualitative content analysis into subcategories and categories. RESULTS: Four categories and 11 subcategories emerged from the first question. The first category, "life and death," was based on joy of living and thoughts of dying. The second category "meaning," consisted of acceptance, reevaluation, hope, and faith. The third category, "freedom of choice," consisted of responsibility and integrity, and the fourth and last category, "relationships and solitude," consisted of alleviation, dependency, and loss. One category emerged from the second question about the health care staff's responsibility, "to achieve an encounter," which was based on the subcategories time and space, attitudes, and invitation and confirmation. SIGNIFICANCE OF RESULTS: The strength of this study was that the findings were fairly congruent in different settings and in different geographical areas. Health care staff were aware of the importance of existential issues to patients. The existential issues, mentioned by health care staff, are similar to findings from studies conducted among patients, which is another strength of the present study. Health care staff are also confident about how to act when these issues are raised by the patients. The challenge for the future is to implement the findings from this study among health care staff in different settings.
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