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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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| 2. |
- 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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