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- Kiwi, Mahin, 1954-
(författare)
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Dementia across cultural borders : Reflections and thought patterns of elderly Iranians with dementia in Sweden, their relatives and staff at a culturally profiled nursing home
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Today’s multicultural society has resulted in major changes, with healthcare undergoing significant modifications. Healthcare workers and patients are increasingly confronted with “cultural” backgrounds other than their own. The world’s population is ageing, and the number of people with dementia is growing, resulting in a growing number of older people with a foreign background whose care needs have increased at different rates. Migration does not only mean moving from one place to another; it also involves the transition of an individual’s lifestyle, life views, social and economic adjustments that may lead to certain changes. These transitions from the “old” to the “new” way of life and from a life without dementia to a life with dementia involve making sense of life’s changes.Aim: The aim of study I was to explore the experiences and perceptions of dementia among Iranian staff working in a culturally profiled nursing home (CPNH). The aim of studies II and III was to explore relatives’ decisions to end caregiving at home, and Iranian families’ and relatives’ attitudes towards CPNHs in Sweden. The aim of study (IV) was to explore how the residents with dementia at the CPNH expressed the feeling of “home”.Method: This thesis is based on more than one year’s fieldwork. The empirical material is based on interviews and observations. Three groups of participants were interviewed and observed: 10 people with dementia (IV), 20 family caregivers and relatives (II and III, respectively) and 34 staff members (I). The interviews were conducted in Persian/Farsi, Azerbaijani, English and Swedish. The choice of language was always up to the participants. All the interviews were audio-recorded, transcribed verbatim in the respective languages and then translated later into Swedish. The analysis of the material was based on content analysis blended with ethnography.Results: Study I shows that people from different culturally and linguistically diverse backgrounds could have different perceptions of what dementia entails. A lack of knowledge concerning dementia affects how staff approach these people.Study II shows that the CPNH is crucial when deciding to cease caregiving at home. It is important to ensure that relatives with dementia are cared for by someone who speaks the same mother tongue. The results indicate that positive feelings of relief or comfort are dominant responses among the participants, some of whom even feel pride in the high standard of care provided by the home.In Study III, most participants based their views on a comparison between the CPNH and Iranian nursing homes after the Islamic Revolution. Negative views of the nursing home were evaluated alongside what the respondents considered to be typically Iranian. In Study IV, the results show that people with dementia’s personal experiences of home played a great role, and although none of the participants felt at home, all of them stated that the CPNH was a place to live in.Conclusion: Perceptions of dementia can be based on cultural and traditional understanding, although this can shift through transition and knowledge accumulation. A lack of knowledge concerning dementia and residents’ sociocultural background, generational differences and incoherence, aligned with staff members’ different sociocultural backgrounds, created many challenges. The staff wanted to learn more about dementia, to be able to manage daily communication with the residents. On another point, the staff admitted that only being able to speak a person’s native language was not enough to claim that they were actually communicating. Family caregivers’ decisions to end caregiving at home involve mutuality, capability and management, but decision-making sometimes has nothing to do with violating a person’s autonomy and is more about protecting the person. The family caregivers do care for frail elderly family members. What has changed due to a transition is the structure and construction of family caregiving. The consequences of communication difficulties between staff and the residents have led to a small degree of social involvement, which in turn affects residents’ daily social state. Overall, many family members stated that the CPNH resembled Iran too much, which disturbed them.The residents thought of home as a geographical location, but also connected it with both positive and negative feelings. Furthermore, the CPNH reminded some of the residents of the nicer side of life back home in Iran, while for others it brought back sad experiences and memories from the past. Nevertheless, the nursing home, due to memories and experiences of life in Iran, “home”, was a place to be and to live.
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| 3. |
- Berterö, Carina, 1959-, et al.
(författare)
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The double-edged experience of healthcare encounters among women with endometriosis : a qualitative study
- 2018
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Ingår i: Journal of Clinical Nursing. - : Wiley-Blackwell Publishing Inc.. - 0962-1067 .- 1365-2702. ; 27:1-2, s. 205-211
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectivesTo identify and describe the experience of healthcare encounters among women with endometriosis.BackgroundEndometriosis is a “hidden” chronic gynaecological disease appearing in every 10th woman of fertile age. Different manifestations of pain are the main symptoms, often leading to impaired physical and mental health, and lower quality of life. Previous research on healthcare experiences among women with endometriosis has focused on diagnostic delay and experiences of encountering general practitioners.DesignA qualitative, interpretive, phenomenological approach was used.MethodsWe interviewed nine women aged 23–55, with a laparoscopy-confirmed diagnosis of endometriosis. The interviews were recorded and transcribed verbatim. The data were analysed following the steps of the interpretive phenomenological approach.ResultsTwo themes were identified in the interview transcripts: being treated with ignorance and being acknowledged. The essence: “the double-edged experience of healthcare encounters” emerged from the themes. The women's experience was double-edged as it involved contradictory feelings: the encounters were experienced as both destructive or constructive. On the one hand, the destructive side was characterised by ignorance, exposure and disbelief. On the other hand, the constructive side made the women feel acknowledged and confirmed, boosting their self-esteem.ConclusionsThe new and important aspects of the findings are that the experience of healthcare encounters is for the first time expressed as double-edged: both destructive and constructive. The experience was of specific importance as it affected the women's perceptions of themselves and of their bodies.Relevance to clinical practiceThe information about the constructive side of the experience is of clinical valuable for all healthcare professionals (nurses, midwives and doctors) encountering these women, as it provides a new level of understanding of the experiences. The findings demonstrate both psychological and practical aspects that can help professionals to improve the encounters.
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| 4. |
- Drott, Jenny, 1976-
(författare)
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Neurotoxic side effects and impact on daily life in patients with colorectal cancer with adjuvant oxaliplatin-based chemotherapy
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Colorectal cancer (CRC) is one of the most common cancers globally. Chemotherapeutic drugs are frequently used in postoperative treatment. The platinum compound oxaliplatin (OXA) is an option for adjuvant treatment of patients with resected CRC, and has been shown to improve survival. OXA-induced neurotoxic side effects are common (e.g. sensitivity to cold, numbness). Neurotoxicity can interfere with the patient’s daily living and affect ability to carry out activities. Because there is no evidence for effective treatment in terms of eliminating neurotoxic side effects, the most successful approaches include early identification, reduction of dose and interruption of treatment. Current research has identified a need for patient-oriented evidence in terms of long-term follow-up of neurotoxicity.Aim: The overall aim of this thesis was to explore OXA-induced neurotoxic side effects in patients with colorectal cancer, and the influence on patients’ daily lives during and post OXA treatment.Methods: The thesis is based on four studies, and includes an analysis of medical records, as well as prospective quantitative and qualitative approaches with longitudinal data collection through a mobile phone-based system. The studies were performed at oncology departments in four hospitals in Sweden. Inclusion criteria were that patients should be at least 18 years of age, and should have been treated with chemotherapy, including OXA (FOLFOX, XELOX), in an adjuvant setting for CRC stages II-III. Study I had a retrospective design, and data involved (n=61) medical records. A structured protocol was used to evaluate the documentation of patients’ neurotoxic side effects. In studies II and III, ten patients were recruited using a strategy of purposeful and consecutive selection according to the inclusion criteria, where OXA-related neurotoxic side effects were assessed. A total of 10 interviews were carried out when neurotoxic side effects appeared (II), and after completed OXA treatment (3, 6 and 12 month’s follow-up) 25 repeated interviews were conducted (III). The prospective longitudinal study IV aimed to identify and assess patient-reported outcomes in terms of neurotoxic side effects, and their impact on patients’ daily activities (n=46). An Oxaliplatin-associated Neurotoxicity Questionnaire (OANQ) was administered in real time to indicate patientreported outcomes. In total, 370 questionnaire responses were available for analysis.Results: The results from the retrospective study (I) showed that a free description of the degree of neurotoxic side effects was given in the patients’ medical records. No formal assessment had been used in the documentation. The findings of the two qualitative studies contribute knowledge about how patients endure neurotoxic side effects early in the treatment phase, and how they learn to live with neurotoxicity in the long-term perspective. Patients coped with their side effects by developing different self-care strategies to restore normality in their daily lives (II-III). Neurotoxic side effects interferes with the patient’s daily activities in a variety of ways. These side effects change in terms of their character and their location in the body over time. The most frequent side effects during treatment were cold-precipitated tingling in the upper extremities and in the mouth/throat. At the end of treatment, neurotoxicity in the lower extremities was considered high and interfered with the patients’ daily activities. The results show significant differences between baseline data, and nine of the patients had not returned to baseline after one year (IV).Conclusion: Neurotoxic side effects affect patients’ daily activities in different ways, with an impact on their physical, psychological, emotional and social life. Patients endured and coped with their side effects in different ways involving self-care strategies to restore normality. The patients’ daily lives were affected by numbness and tingling in the legs and tingling in upper extremity, and they had learned to live with these side effects. The neurotoxic side effects changed character and localisation over time. These results should be taken into account when patients are informed about treatment, and in the dialogue about the benefits and risks.
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| 5. |
- Drott, Jenny, 1976-, et al.
(författare)
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Neurotoxic Side Effects Early in the Oxaliplatin Treatment Period in Patients With Colorectal Cancer
- 2018
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Ingår i: Oncology Nursing Forum. - Pittsburgh, PA, United States : Oncology Nursing Society. - 0190-535X .- 1538-0688. ; 45:6, s. 690-697
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: To identify and describe experiences of patients with colorectal cancer (CRC) who have neurotoxic side effects early in the oxaliplatin treatment period, and how neurotoxicity affects their daily lives.PARTICIPANTS & SETTING: 10 patients with stage II-III CRC were included. All were treated with adjuvant oxaliplatin postoperatively and assessed neurotoxicity via a platform-independent mobile phone-based system. Patients were recruited from two hospitals in southern Sweden from November 2013 to August 2014.METHODOLOGIC APPROACH: Qualitative interview study conducted through open-ended, face-to-face, qualitative interviews. Thematic analysis was used.FINDINGS: A main theme was identified.IMPLICATIONS FOR NURSING: Nurses have an obligation to communicate the importance of early detection of neurotoxicity. Mobile phone technology seems to be a valuable tool for monitoring patient-reported neurotoxicity to improve communication and supportive care.
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| 6. |
- Grundström, Hanna, 1982-
(författare)
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Disclosing the invisible : experiences, outcomes and quality of endometriosis healthcare
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Many women with endometriosis report that their symptoms are normalized and trivialized when they seek medical care and they often experience diagnostic delays, ineffective treatments and physiological, psychological and social consequences. However, there is a knowledge gap when it comes to women’s experiences of different aspects of endometriosis healthcare, and the quality of that care. Aim: The aim of this thesis was to identify, describe and analyse the experiences, encounters and outcomes of endometriosis healthcare from different perspectives. Design and Method: This thesis is a summary of four studies with different methods and designs. Study I and II were qualitative interview studies in which nine women with a laparoscopy-verified endometriosis diagnosis (study I) and 25 healthcare professionals (HCPs) (study II) described their experiences of healthcare encounters related to endometriosis symptoms. The interviews were analysed using interpretive phenomenology (study I) and conventional content analysis (study II). Study III was a cross-sectional observational comparative study measuring pain thresholds, health-related quality of life (HRQoL) and symptoms of anxiety and depression using quantitative sensory testing (QST) and questionnaires in order to determine pain thresholds in healthy women (n=55) and women with persistent pelvic pain (PPP), with (n=14) and without (n=23) a confirmed diagnosis of endometriosis. The correlations between pain thresholds and duration of PPP, HRQoL and symptoms of anxiety and depression were also analysed. Study IV was a quantitative observational study using register data from the National Quality Register for Gynaecological Surgery. Patient-reported experience measures (PREM) and patient-reported outcome measures (PROM) after benign hysterectomy were analysed and compared in women with and without PPP and endometriosis (study IV). Results: The results of the thesis are summarized in three themes: The struggle to visualize the pain, The endometriosis diagnosis as a key to understanding and enduring persistent pelvic pain and Healthcare encounters as potentially life changing. In the first theme, women and HCPs described the healthcare encounters concerning endometriosis symptoms as troublesome (study I, II). The women struggled with disclosing, visualizing and communicating their hidden pain to the HCPs (study I), and HCPs expressed insecurity and limited knowledge when caring for these women (study II). Study III showed widespread reduced pain thresholds among women with PPP compared with healthy controls, and a significant positive correlation between duration of PPP and reduced pain thresholds . Study III also showed a reduced HRQoL and higher prevalence of anxiety and depressive symptoms among women with PPP, which were also described by the women (study I).The importance of getting a diagnosis was described in the second theme by both women and HCPs (study I, II), but women with PPP with and without endometriosis diagnosis did not differ significantly in their pain thresholds or psychosocial outcomes in study III. Likewise, women with PPP with and without endometriosis gave more equal PREM and PROM answers than women in the pain-free comparison group. Overall, women undergoing hysterectomy on benign indications were satisfied with the experience and outcomes of the surgery (study IV).As described in the last theme, healthcare encounters could be constructive or destructive. Positive experiences could make the symptoms easier to endure. The constructive encounters were often characterized by a holistic approach and a care structured in multidisciplinary teams. Conclusion and clinical implications: The results suggest that PPP should be taken seriously and treated actively in order to minimize the risk of physiological and psychological consequences, such as reduced pain thresholds, lower HRQoL and symptoms of anxiety and depression. Unrelieved PPP could also be an explanatory factor for long-term physiological consequences, such as lower PREM and PROM after hysterectomy.High-quality endometriosis healthcare should provide an interaction of physical, psychological and social factors. If women experience that HCPs acknowledge their pain and the effect of pain on HRQoL and mental health, and are offered proper pain-relieving treatment, healthcare encounters could change their lives.
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