Coping in the role as next of kin of a person with a brain tumour: a qualitative metasynthesis

Objective Being the next of kin of a person with a brain tumour is a stressful experience. For many, being a next of kin involves fear, insecurity and overwhelming responsibility. The purpose of this study was to identify and synthesise qualitative original studies that explore coping in the role as next of kin of a person with a brain tumour. Methods A qualitative metasynthesis guided by Sandelowski and Barroso’s guidelines was used. The databases Medline, CHINAL and PsycINFO were searched for studies from January 2000 to 18 January 2022. Inclusion criteria were qualitative original studies that aimed to explore coping experience by the next of kin of a person with brain tumour. The next of kin had to be 18 years of age or older. Results Of a total of 1476 screened records data from 20 studies, including 342 participants (207 females, 81 males and 54 unclassified) were analysed into metasummaries and a metasynthesis. The metasynthesis revealed that the next of kin coping experiences were characterised by two main themes: (1) coping factors within the next of kin and as a support system, such as their personal characteristics, perceiving the role as meaningful, having a support system, and hope and religion; (2) coping strategies—control and proactivity, including regaining control, being proactive and acceptance. Conclusion Next of kin of patients with brain tumours used coping factors and coping strategies gathered within themselves and in their surroundings to handle the situation and their role. It is important that healthcare professionals suggest and facilitate these coping factors and strategies because this may reduce stress and make the role of next of kin more manageable.publishedVersio

Reflections on communication of disease prognosis and life expectancy by patients with colorectal cancer undergoing palliative care: a qualitative study

Objectives Patients with colorectal cancer undergoing palliative treatment receive extensive treatment-related information throughout their disease trajectory. We aimed to explore the experiences of patients with incurable colorectal cancer while in palliative care and their reflections on the information provided by physicians and nurses. Our main focus was the patients’ thoughts about how information about disease status and life expectancy was communicated, from the first time that they were informed about the incurable nature of their disease through to postsurgery palliative treatment. Settings Patients with colorectal cancer receiving palliative chemotherapy. Research design We used a qualitative approach, and the data were analysed by qualitative content analysis. Participants 20 patients (34–75 years of age) were included in the study; 12 received first-line chemotherapy and 8 received second-line chemotherapy. Eleven patients were treated by oncologists, and nine were treated by junior physicians. Results Data-driven empirical analysis identified three themes: (1) inadequate information during the initial phase of the disease trajectory; (2) hope and information further into the disease trajectory and (3) personal, professional and organisational factors that influenced information and communication throughout the disease trajectory. Conclusion The participants’ experience of being told for the first time that they had an incurable disease was perceived as inadequate, while postsurgery palliative chemotherapy, physicians and nurses offered hope. The participants preferred customised information about their treatment and likely future prospects and physicians and nurses who took a holistic and compassionate approach focusing on their lifeworld. To be a sensitive, holistic and compassionate physician or nurse requires knowledge and confidence. To achieve this requires training and guidance at universities and in hospitals.Reflections on communication of disease prognosis and life expectancy by patients with colorectal cancer undergoing palliative care: a qualitative studypublishedVersio

Beyond challenges and enrichment: a qualitative account of cross-cultural experiences of nursing patients with an ethnic minority background in Norway

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Navigating the care between two distinct cultures: a qualitative study of the experiences of Arabic-speaking immigrants in Norwegian hospitals

Background During the past decades, there has been an increase in the number of immigrants to European and Scandinavian countries. This has challenged the health-care systems, which cater to the needs of patients despite their cultural and linguistic barriers, in these countries. Most studies on this topic have focused on the perspectives of health-care providers in delivering their service. The purpose of this qualitative study was to explore how hospitalized Arabic-speaking patients experienced their interaction with the Norwegian health-care system. Methods In-depth interviews with 20 participants and researcher’s participant observation were conducted to explore the idiosyncratic details and ascribed meanings that foreign-born patients attach to their everyday experience of the Norwegian health-care system. Thematic analysis was performed on the transcribed and translated versions of the in-depth interviews. Results The findings of this study indicated three interrelated core themes. Firstly, there exist challenges in understanding and being understood because of linguistic and cultural differences of newly migrated patients. Secondly, some patients missed the holistic and direct care available in their home countries. Finally, patients were satisfied with the Norwegian health-care system because of its compassion, care, and respect toward them as well as advanced health-care equipment. Conclusion Arabic-speaking patients in Norwegian hospitals experienced long waiting times and linguistic problems. Hence, a better and specialized interpreter service may resolve problems emanating from communication within the system and the subsequent delays in treatment. Compassionate care and the feeling of respect and love is the core strength of the Norwegian system as perceived by the patients.publishedVersio

Perceived effects of health status on sexual activity in women and men older than 50

Published version of an article from the journal: Health and Quality of Life Outcomes. Also available from the publisher: http://dx.doi.org/10.1186/1477-7525-12-43Background Sexual activity and enjoyment are considered to be important components of quality of life (QOL) for adults of all ages. However, limited data are available on the effects of health status on sexual activity in women and men older than 50 years. Thus, our aim was to explore the perceived effects of health status on sexual activity in women and men older than 50 years. Methods For this purpose we used data from an age and gender matched control study initially designed to study QOL in patients with low-energy wrist fracture. We investigated patients with wrist fractures older than 50 years (n = 181), as well as age- and gender-matched controls (n = 226), who participated in the QOL study. There were minimal differences between patients and controls, thus the groups were pooled (mean age 67 years (8 SD)). Health-related quality of life (HRQOL) was assessed using SF-36 and 15D, and the global quality of life using the Quality of Life Scale (QOLS). To assess perceived effects of health status on sexual activity we used the question on sexuality from the 15D questionnaires. Group comparisons and logistic regression analyses were conducted. Results The 15D question on sexuality was not answered by 25% of the participants. Health status having a large negative effect on sexual activity was reported by only 13% of the participants. In the multivariate analyses a large negative effect of health status on sexual activity was associated with higher age (60–69 years: OR = 5.7, 95% CI = 1.62–29.2; 70–79 years: OR = 3.60, 95% CI = 0.94–13.9; ≥80 years: OR = 9.04, 95% CI = 1.29–63.4), male gender (OR = 10.8, 95% CI = 3.01–38.9), weight (OR = 1.03, 95% CI = 1.00–1.07), low SF-36 PCS score (OR = 0.88, 95% CI = 0.37–0.93) and a low SF-36 MCS score (OR = 0.92, 95% CI = 0.88–0.96). Conclusion Only a small proportion of the participants reported their health status to have a large negative effect on sexual activity. Furthermore, health status having a negative effect on sexual activity was associated with decreased HRQOL. Insights into this important topic may increase our awareness as health care workers and help us to address this aspect of QOL in this age group. Keywords: Health status; Sexual activity; Quality of life; Elderl

Comparing 15D and SF-6D performance in fragility wrist and hip fracture patients in a two-year follow-up case-control study

Accepted version of an article in the journal:Value in Health. Published available from Elsevier on Science Direct: http://dx.doi.org/10.1016/j.jval.2012.08.2200Objectives To examine and compare the two utility and health-related quality-of-life (HRQOL) measures 15D and (SF-6D) in fragility wrist and hip fracture patients and controls, study the responsiveness of 15D and SF-6D, and examine the impact of these fractures on changes in 15D and SF-6D scores over 2 years. Methods A total of 152 wrist fracture patients and 164 controls and 61 hip fracture patients and 61 controls with 15D and SF-6D scores were studied. Results The mean 15D score decreased significantly in wrist fracture patients between baseline and 2-year follow-up (P=0.003). A wrist fracture was a significant predictor of a decrease in 15D scores 2 years after fracture (B=−0.016; P=0.049), along with low body mass index (B=−0.002; P=0.009). In hip fracture patients, both 15D and SF-6D scores decreased significantly (P<0.001). A hip fracture was a significant predictor of a decrease in 15D (B=−0.060; P=0.001) and SF-6D (B=−0.096; P=0.001) scores. Conclusions Our data suggest that a fragility wrist fracture has a long-term negative effect on HRQOL, but not as strong as for fragility hip fractures. 15D seems to be more responsive than SF-6D when assessing HRQOL in patients with fragility fractures

Listening to the elephant in the room: response-shift effects in clinical trials research

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Is global quality of life reduced before fracture in patients with low-energy wrist or hip fracture? A comparison with matched controls

<p>Abstract</p> <p>Background</p> <p>The aims of the study were (i) to examine global quality of life (GQOL) before fracture in patients with low-energy wrist or hip fracture compared with an age- and sex-matched control group, and (ii) to identify relationships between demographic variables, clinical fracture variables, and health- and global-focused quality of life (QOL) prior to fracture.</p> <p>Methods</p> <p>Patients with a low-energy fracture of the wrist (n = 181) or hip (n = 97) aged ≥ 50 years at a regional hospital in Norway and matched controls (n = 226) were included. The participants answered retrospectively, within two weeks after the fracture, a questionnaire on their GQOL before the fracture occurred using the Quality of Life Scale (QOLS), and health-focused QOL using the Short Form-36, physical component summary, and mental component summary scales. A broad range of clinical data including bone density was also collected. ANOVA and multiple linear regression analysis were used to analyse the data.</p> <p>Results</p> <p>Osteoporosis was identified in 59% of the hip fracture patients, 33% of the wrist fracture patients, and 16% of the controls. After adjusting GQOL scores and the three sub-dimensions for known covariates (sociodemographics, clinical fracture characteristics, and health-focused QOL), the hip patients reported significantly lower scores compared with the controls, except for the sub-dimension of personal, social, and community commitment (p = 0.096). Unadjusted and adjusted GQOL scores did not differ between the wrist fracture patients and controls. Sociodemographics (age, sex, education, marital status), clinical fracture variables (osteoporosis, falls, fracture group) and health-focused QOL explained 51.4% of the variance in the QOLS, 35.2% of the variance in relationship and marital well-being, 59.3% of the variance in health and functioning, and 24.9% of the variance of personal, social, and community commitment.</p> <p>Conclusion</p> <p>The hip fracture patients had lower GQOL before the fracture occurred than did controls, even after adjusting for known factors such as sociodemographics, clinical variables and health-focused QOL. The findings suggest that by identifying patients with low GQOL, in addition to other known risk factors for hip fracture, may raise the probability to target preventive health care activities.</p

Prevalence of mental distress and factors associated with symptoms of major depression among people living with HIV in Norway

For people living with HIV (PLHIV) who can access lifesaving treatment, HIV has become a chronic lifelong condition; however, PLHIV have more mental and somatic comorbidities than their HIV-negative peers. In this cross-sectional study, we assessed the prevalence of mental distress and identified factors associated with major depression among 244 well-treated PLHIV residing in Norway. Participants completed validated questionnaires covering mental and somatic health. The prevalence of mental distress, defined as a score on the Hopkins Symptom Check List-25 >1.75, was 32%, and that of symptoms of major depression, defined as a score on the Beck Depression Inventory-II ≥20, was 15%. The factors associated with major depressive symptoms identified using logistic regression were risk of drug abuse (adjusted odds ratio (AOR) 15.1, 95% confidence interval (CI) 3.28, 69.3), fatigue (AOR 12.5, 95% CI 3.90, 40.0), trouble sleeping (AOR 7.90, 95% CI 2.85, 21.9), African origin (AOR 3.90, 95% CI 1.28, 11.9), low education (AOR 3.31, 95% CI 1.18, 9.30), and non-disclosure (AOR 3.22, 95% CI 1.04, 10.0). Our findings indicate that the prevalence rates of mental distress and major depressive symptoms are higher among well-treated PLHIV residing in Norway than in the general population. These conditions are under-diagnosed and under-treated, and increased awareness is needed