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- 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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| 2. |
- 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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