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Biomedical subjects

Peter Strang

Publications and source records attributed to Peter Strang.

At least 19 recordsLinked to original sources

Existential loneliness in a palliative home care setting.

BACKGROUND: The diagnosis of an incurable disease implies an existential crisis. This study focused on the emotions, perceptions, and experiences of existential isolation in palliative patients with cancer and their families. MATERIALS AND METHODS: A total of 40 respondents (20 patients and 20 family members) were interviewed in depth. All were Swedes who defined themselves as nonreligious. The patients were enrolled in an advanced hospital-based home care team. The interviews were taped, transcribed, and analyzed with a qualitative, hermeneutic method. RESULTS: The data revealed experiences of existential loneliness with the impending death as a primary source. Experiences of being alone in "a world of one's own" were common. The changes in everyday life and the increasingly restricted social interaction because of the illness meant that the patient partly lost the protection against isolation that the spirit of community normally provides. Other situations that had a triggered the existential isolation were, for example, when a patient in need of support was left alone, when he or she was treated disrespectfully or in a way that made him or her feel invisible, or when people avoided contact because of uneasiness or fear. Changes in one's own body and mood gave rise to feelings of loneliness and unfamiliarity toward oneself. When a staff member touched the patient's body in a nonempathic way, this could induce feelings of being treated like an animal.

Adult↗

Lower limb lymphedema: experiences and perceptions of cancer patients in the late palliative stage.

UNLABELLED: Lower limb lymphedema (LLL) is a common but neglected problem in palliative cancer patients. No studies have focused on these patients' experiences of lymphedema. The aims of this study were to explore patients' experiences regarding LLL and how they manage to deal with this in the late palliative stage. METHODS: Thirteen patients with cancer-related LLL were included to satisfy a maximum variation sampling strategy. Interviews were analyzed using a qualitative phenomenographic method. RESULTS: LLL influenced the patients' thoughts about the future. Body image was often strongly influenced. Interactions with other persons were perceived as both positive and negative, and a range of coping strategies were expressed. CONCLUSION: LLL can exert a considerable influence on the physical experiences and the psychosocial situation of cancer patients in palliative care. Areas in need of increased education, attention, and further research are highlighted.

Activities of Daily Living↗

Dying with dignity according to Swedish medical students.

GOAL OF WORK: To die with dignity is an important but ambiguous concept, and it is used in contradictory contexts, both for the promotion of palliative care and as an argument for euthanasia. Our goal was to explore medical students' definition of a dignified death. PATIENTS AND METHODS: A questionnaire containing open-ended questions was answered anonymously by 165 first- and fifth-year medical students. The data were analysed using qualitative content analysis with no predetermined categories. MAIN RESULTS: The students' descriptions of a dignified death resulted in five categories of death: (1) without suffering, (2) with limited medical interventions, (3) with a sense of security, which implied a safe environment nursed by professional staff, (4) with autonomy, respect for the individual and empowerment to the patient and (5) with acceptance. These findings show similarity to the established concepts of a good death, as well as the view of a dignified death by terminally ill patients. CONCLUSIONS: The data suggest that the students perceive that the medical system is over-treating patients and sometimes causing harm to dying patients. The results reveal a potential misunderstanding and contradiction relating to death without suffering and the use of necessary palliative interventions. These findings are important when planning education as regards palliative care and dignified death.

Adult↗

Breakthrough pain in malignant and non-malignant diseases: a review of prevalence, characteristics and mechanisms.

Breakthrough pain or transient worsening of pain in patients with an ongoing steady pain is a well known feature in cancer pain patients, but it is also seen in non-malignant pain conditions with involvement of nerves, muscles, bones or viscera. Continuous and intermittent pain seems to be a general feature of these different pain conditions, and this raises the possibility of one or several common mechanisms underlying breakthrough pain in malignant and non-malignant disorders. Although the mechanisms of spontaneous ongoing pain and intermittent flares of pain (BTP) may be difficult to separate, we suggest that peripheral and/or central sensitization (hyperexcitability) may play a major role in many causes of BTP. Mechanical stimuli (e.g. micro-fractures) changes in chemical environments and release of tumour growth factors may initiate sensitization both peripherally and centrally. It is suggested that sensitization could be the common denominator of BTP in malignant and non-malignant pain.

Humans↗

Palliation of bone pain in prostate cancer using chemotherapy and strontium-89. A randomized phase II study.

Strontium-89 is an established alternative for the alleviation of bone pain in prostate cancer. There are few data evaluating the effect on pain of palliative chemotherapy. The aim of this randomized phase II study was to assess and compare the analgesic efficacy of strontium-89 and chemotherapy (FEM=5-FU, epirubicin, and mitomycin C) in 35 patients with disseminated, hormone-refractory prostate cancer suffering from persisting bone pain despite analgesic treatment. In order to minimize the risk for imbalances regarding the two patient groups, a double-blind randomization was performed. A significant reduction in pain intensity and pain frequency was registered in both patient groups (P < 0.01 in both groups after 3 weeks). Side effects were generally mild in the strontium-89 group and significantly more severe in the FEM group. The effect of FEM on pain is surprising as chemotherapy has generally only limited effect on tumor growth in bone metastases due to prostate cancer. A possible explanation is that FEM has an inhibitory activity on the inflammatory component of metastases.

Aged↗

Exploring comprehensibility and manageability in palliative home care: an interview study of dying cancer patients' informal carers.

The presence of an informal carer is often a prerequisite for successful palliative home care, and the staff's ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care.

Adaptation, Psychological↗

Existential pain--an entity, a provocation, or a challenge?

"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.

Caregivers↗

Next of kin's experience of powerlessness and helplessness in palliative home care.

GOALS OF WORK: Powerlessness and helplessness have been very little studied. The aims of this study were (1) to describe what characterise such experiences and the meaning of them to next of kin of cancer patients in advanced palliative home care and (2) to make quantifications. PATIENTS AND METHODS: The study design was cross-sectional and targeted next of kin during ongoing palliative home care and next of kin of patients who had died 3-9 months earlier; 233 next of kin responded (response rate 72%) to a postal questionnaire with both Likert-type and open-ended questions. The text responses were analysed with a combined qualitative and quantitative content analysis. MAIN RESULTS: Thirty-six percent of respondents stated that they had experienced powerlessness and/or helplessness every day or several times per week, whereas 33% had never had this experience during the palliative home care period. Powerlessness and helplessness concerned next of kin's perception of the patient's suffering, of the patient's fading away and the next of kin's own feelings of insufficiency and resulted in both physical and psychological symptoms, such as muscle tension, headache, loss of appetite, anxiety and depression. In addition, powerlessness and helplessness concerned also a deeper meaning with existential and social aspects, such as feelings of guilt, anger and loneliness. CONCLUSIONS: The main findings provide tools for the practitioner to identify situations contributing to next of kin's sense of powerlessness and helplessness. The findings are discussed in relation to the concepts of symptom control, communication of awareness and humans' search for action.

Adult↗

Meaningfulness in palliative home care: an interview study of dying cancer patients' next of kin.

OBJECTIVE: An increasing number of patients are cared for at home and the presence of next of kin is often a prerequisite for successful home care. The aim of this study was to describe and interpret the construct of meaningfulness in next of kin of cancer patients who are in advanced palliative home care. METHODS: The perspective of Antonovsky's salutogenic framework of sense of coherence was applied in the analysis. Using a hermeneutic approach, 19 next of kin were interviewed (n=30 interviews) during ongoing palliative home care. RESULTS: Elements that facilitated meaningfulness included comfort, retaining everyday life, action, commitment, and hope, which were of great importance for creating a perception of self-transcendence and that the best possible was done. SIGNIFICANCE OF RESULTS: The findings are discussed in relation to the concepts of meaning-based coping, tragic optimism, and existentialism. Clinical implications are suggested.

Aged↗

Advanced palliative home care: next-of-kin's perspective.

GOALS: (1). To describe what aspects are important when next-of-kin evaluate advanced palliative home care (APHC) and (2). to compare the expressed aspects and describe eventual differences among the three settings, which differed in terms of length of services, geographic location, and population size. SUBJECTS AND METHODS: Four to 7 months after the patient's death (87% from cancer), 217 consecutive next-of-kin from three different settings in Sweden responded (response rate 86%) to three open-ended questions via a postal questionnaire. Qualitative content analysis was performed. MAIN RESULTS: Service aspects and comfort emerged as main categories. The staff's competence, attitude and communication, accessibility, and spectrum of services were valued service aspects. Comfort, such as feeling secure, was another important aspect and it concerned the next-of-kin themselves, the patients, and the families. Additionally, comfort was related to interactional issues such as being in the center and sharing caring with the staff. The actual place of care (i.e., being at home) added to the perceived comfort. Of the respondents, 87% described positive aspects of APHC and 28% negative aspects. No major differences were found among the different settings. CONCLUSIONS: Next-of-kin incorporate service aspects and aspects relating to the patient's and family's comfort when evaluating APHC. The importance of these aspects is discussed in relation to the content of palliative care and potential goals.

Caregivers↗

Existential concerns of families of late-stage dementia patients: questions of freedom, choices, isolation, death, and meaning.

UNLABELLED: Several studies focus on palliative aspects of the caregiver burden of dementia families. However, only few studies have addressed the existential perspective in this situation. The aim of this study was, therefore, to focus on issues of freedom/responsibility, existential isolation, death, and issues of meaning/meaninglessness. METHOD: Qualitative tape-recorded in-depth interviews with 20 family members were conducted. The transcripts were analyzed with a hermeneutic approach. RESULTS: To take responsibility (faithfulness; paying back) was generally perceived as rewarding, but in some cases it was more a matter of duty with elements of guilt and obligation. Existential isolation dealt with the hampered or ended communication with a spouse or parent who was no longer able to communicate; the situation of having no other relatives left in life or, the role-reversal (i.e., to parent your own parent). Thoughts about the impending death were affected by previous experiences, not only by the actual situation. Anticipatory grief was commonplace. Some informants described an increased awareness of the shortness of life, which made them live more intensely in the present. The illness itself was discussed in terms of meaninglessness. Still, many respondents were able to identify meaning in the past (memories), present (daily routines, positive aspects of responsibility) and future (to pass on the patient's lifework). DISCUSSION: The study underlines the importance of not only seeing the physical and psychosocial caregiver aspects, but also the existential ones that emerge when confronting impending death. Staff need to be more aware of existential issues in order to support families also in existential crisis.

Adult↗

Differences in supporting families of dementia patients and cancer patients: a palliative perspective.

OBJECTIVES: To investigate what staff working in close contact with patients perceive as good support of families in dementia care as compared with support of families in palliative cancer care. DESIGN AND SUBJECTS: During four national courses on dementia care and one national course on palliative cancer care, 316 and 121 participants, respectively, responded to an open-ended question: In your experience, what are the two most important measures for supporting families of dementia patients/severely ill cancer patients? Sixty-one items were coded and allocated into 10 main categories and analysed with both a qualitative and quantitative approach. RESULTS: The dominant items for both staff groups were to listen to the family member and to give information, although listening was significantly more often stressed in the palliative group (P < 0.001). The staff in dementia care stressed significantly more the importance to form support groups for families (P < 0.001), to offer respite care (P < 0.001), to educate families (P < 0.001) and to try to relieve the family's feeling of guilt (P < 0.001). In the palliative staff group, the importance of being available (P < 0.05), creating a sense of security (P < 0.001) and supporting the family after the patients death (P < 0.01) were significantly more focused on. DISCUSSION: The respondents from the dementia staff group and from the palliative cancer group stressed the importance of supporting family members. However, the type of support needed partly differs because of the different trajectories in dementia compared with severe cancer phases.

Attitude of Health Personnel↗

Pain and pain alleviation in hospital-based home care: demographic, biological and treatment factors.

The aim of this study was to contrast two opposed groups, namely palliative cancer patients who were suffering significant pain (VAS> or =4) and palliative cancer patients with no pain (VAS = 0) in hospital-based home care and, retrospectively, to study possible differences in relation to demographic, biological and treatment factors. The ESAS (Edmonton Symptom Assessment Scale) was used to assess 191 palliative cancer patients on admission and after 1 week of home care. Fifty-two (27%) had pain (mean 5.5+/-1.7) and 72 (38%) had no pain on admission [the middle group (n=67) had VAS 1-3]. Activity was more severely affected (5.4 vs 4.2, p<0.01) and nausea less well controlled in patients with pain (2.3 vs 0.7, P<0.0001). Pain was associated with the diagnosis of prostate cancer (P<0.01) and the presence of skeletal metastases (P<0.001), whereas pain-free patients, with or without analgesics, more often had colorectal cancer (P<0.01) or melanoma (P<0.05). The medication profiles differed between the two groups: 22 (42%) of the 52 patients with pain were on step 3 of the WHO analgesic ladder and 24 of 51 (47%) were receiving antiemetics, whereas 42 (58%) of the 72 patients with no current pain had no analgesic prescribed and only 25% of them had antiemetics prescribed, indicating biological differences. If pain was present on admission a pain analysis was formally documented in 23 (44%) of the 52 cases and the medication was changed in 27 of the 52 (52%). The patients improved after 1 week (5.4+/-1.6 vs 3.9+/-2.3, P<0.001), and the improvement was significant even when a pain analysis was not documented or when medication was not changed. In conclusion, the results of this study indicate biological differences in pain alleviation and the need for a more structured way of working.

Aged↗

Spiritual needs as defined by Swedish nursing staff.

A study was undertaken to describe how Swedish nursing staff at six different units characterize spiritual needs in a broad context, including both religious and existential issues. Another aim was to study whether there are any special groups of patients for whom these needs are considered to be of utmost importance. A questionnaire comprising two open-ended questions (the focus of the study) and six background questions was mailed to 191 nurses. Data were obtained from 141 nurses who worked on the oncology, palliative, neurological, neurosurgery and psychiatric units or in nursing homes. Data from the open-ended questions were analysed using content analysis and classified into three categories: (i) (general) spiritual issues, (ii) religious issues, and (iii) existential issues. Sub-categories of the latter were (a) meaning, (b) freedom, (c) isolation and (d) death, i.e. the four central issues in existentialism as previously defined by existential philosophers. A majority of the nurses only had limited theoretical knowledge about definitions. Nevertheless, their suggestions for improved spiritual and existential support contained essential elements that could be allocated to the three main categories. They had some difficulty distinguishing between spiritual and psychosocial care. According to the nurses, special groups of interest for spiritual and existential support were severely ill, dying persons and immigrants who actively practiced their religion. We conclude that there is a willingness to pay attention to spiritual and existential needs, but nurses still have difficulty defining what such care should include. The study revealed that nursing staff needed, and also made inquiries about, more education in order to deepen their knowledge.

Attitude of Health Personnel↗