Symptoms in the cancer patient - Of importance for their caregivers’ quality of life and mental health?

Purpose: To examine the level of symptom burden in a sample of cancer patients in a curative and palliative phase, In addition, to determine a) whether the patients’ symptom burden and patients’ demographic variables, and b) the and caregivers’ demographic variables’ impact on the caregivers’ quality of life and mental health. Method: This descriptive, cross-sectional study combines data from two samples. The first group consists of caregivers of hospitalized patients with cancer in the late palliative phase and the second group is caregivers of outpatients with cancer who have pain and/or use of analgesics. Results: The main result showed that the symptom burden was close to equal when we compared the cancer patients in the palliative and the curative phase respectively. The whole sample of patients seemed extremely tired because they score high on items capturing fatigue or weakness. They also had problems with pain and constipation. For patients having trouble sleeping, the caregivers’ reported high level of depression, whilst caregivers’ gender had impact on the caregivers’ anxiety. The younger the patients the more impact on caregivers’ QOL mental health. Conclusion: In this study no significant differences were revealed when comparing symptom burden among cancer patients in different stages of the disease. Caregivers reported more depression when patients had trouble sleeping and more declined mental quality of life the younger the patients’ age. Female caregivers reported more anxiety than male caregiver

Does the cancer patient’s disease stage matter? : a comparative study of caregivers’ mental health and health related quality of life

Objective: Cancer affects both patients and their caregivers. Caregiver burden may change during different stages of the patients’ cancer trajectory. Limited research has focused on the impact of being a caregiver, assessed by the caregiver’s mental health and quality of life (QOL) during the curative and the palliative phases of the patient’s disease. The aim of this study is to compare caregivers of cancer patients during the curative and a palliative phases with respect to their mental health and health-related QOL. Method: This descriptive, cross-sectional study combines data from two studies. The first group consists of caregivers of patients with cancer in the late palliative phase and the second group consists of caregivers of outpatients with cancer who suffer from pain and/or use analgesics. Data were collected by means of standardized measures and analyzed with descriptive statistics. Results: Based on this material, no significant differences in mental health and healthrelated QOL were revealed for caregivers of cancer patients in the palliative and the curative phases, respectively. Neither education level in the caregivers, nor the patients’ functional status influenced caregivers’ mental health or QOL. Younger caregivers seem to have better physical QOL. Significance of results: Being caregivers of cancer patients seems to have a similar pattern of impact on caregivers’ mental health and quality of life regardless of the patient’s disease stage. We share some reflections about the way in which the cancer stage is divided and the appropriateness of such selection for measuring caregivers’ mental health and QOL. Additionally, we discuss the use of generic instruments for measuring specific contexts and particular samples

Relationships of sources of meaning and resilience with meaningfulness and satisfaction with life: A population-based study of Norwegians in late adulthood

Health-promoting initiatives incorporating meaning-making to enhance the well-being of people in late adulthood are important, particularly as the number of older people is increasing. Resilience and sources of meaning may be related to individuals’ experience of meaningfulness and satisfaction with life. However, few studies have investigated these relations among people in late adulthood. In the present exploratory study, we asked the following questions: What are the differences regarding scores on sources of meaning, resilience, meaningfulness, and satisfaction between people in late adulthood (≥65) and other adults (18–64)? What is the association between sources of meaning and meaningfulness, and between resilience and meaningfulness? What is the association between sources of meaning and satisfaction with life, and between resilience and satisfaction with life? A cross-sectional design was used. A population-based sample of 925 participants (aged 18–91 years) was recruited from the National Population Register in Norway. Of these, 219 participants were 65 years old and older (mean age 73 years). Additionally, sub-analyses for the age-group ≥ 75 (N = 71) were performed. Independent-samples t-tests, chi-square tests, one-way ANOVA, and linear regressions adjusted for demographics, anxiety, and depression were performed utilizing standardized questionnaires. It was found that people in late adulthood (≥65 years) scored significantly higher on meaningfulness compared to younger adults (18–64). Of the sources of meaning, vertical self-transcendence, including explicit religiosity and spirituality, had the strongest relation to meaningfulness for people in late adulthood, after adjusting for demographics, anxiety, and depression. For the same group, accomplishment, including generativity and unselfish engagement with the surroundings and future generations, also stood out as a prominent source of meaning when related to meaningfulness. No sources of meaning were associated with satisfaction with life in the older group. No associations between resilience and meaningfulness, nor between resilience and satisfaction with life, were found among people in late adulthood. However, positive associations were found between resilience and meaningfulness, as well as between resilience and satisfaction with life, in the 18– 64 age group. Longitudinal research and interventional studies are needed to confirm whether the designated sources contribute to meaningfulness in a Norwegian context. The implications of the findings are discussed.publishedVersio

A Psychometric Evaluation of the Threadgold Communication Tool for Persons with Dementia

The objective of this study was to investigate the psychometric properties of the Threadgold Communication Tool (TCT). Method: Internal consistency reliability was measured using Cronbach’s α coefficient and inter-item correlation. Test-retest was performed to examine the instrument’s stability. Exploratory principal component analysis (PCA) with oblimin rotation was carried out to evaluate construct validity. Finally, the score on each item of the TCT was correlated with the person’s Mini Mental State Examination (MMSE) and Barthel Index of activities of daily living scores. Results: A total of 51 persons participated, with a mean age of 86.7 (SD 6.6) years, of whom 46 were women with moderate-to-severe dementia [mean MMSE score 7.5 (SD 6.7)]. There were two measurement points 2 weeks apart. The results showed a satisfactory level for internal consistency and a high test-retest reliability (r = 0.76). The corrected item-total correlation ranged between 0.50 and 0.87, and a two-factor structure was revealed at the PCA. ‘Vocalizing’ seemed to measure another aspect of communication and was the only item which was negatively loaded. Conclusion: Despite the low sample size in this study, the results revealed the TCT as a reliable and valid instrument, suitable for measuring communication among people with dementia. We suggest clarifying the understanding of ‘vocalizing’ before considering removing it from the scale

Dignity and loss of dignity: Experiences of older women living with incurable cancer at home

In this study, we explored and identified crucial experiences that constitute dignity and loss of dignity among older women living with incurable cancer at home. In-depth interviews with 13 women, and participant observations of five of these women, were performed. Hermeneutical interpretations of interview texts and field notes were conducted. Crucial experiences that preserved the women’s dignity included having a sense of control, making one’s own decisions, experiencing hope and meaningfulness, feeling valued as a human being and having the opportunity to be in a treasured and nurturing environment. Dignity loss was related to losing the opportunity for self-determination, sensing hopelessness and worthlessness in a shroud of illness, experiencing violation of their personal life and being situated in surroundings that enhanced their sense of disconnection and alienation. Quality of care was experienced as more important than the physical place in which to spend their final stage of life. The findings suggest that dignity preservation should be a core dimension in care for older women living with incurable cancer at home. Future research should investigate how dignity-preserving care can be organized and practiced within municipal palliative care services.publishedVersio

Healthcare professionals' perceptions of dignity-preserving care for older home-dwelling women with incurable cancer in Norway

Municipal end-of-life care for older home-dwelling patients with cancer is a complex matter requiring healthcare professionals (HCPs) to recognize gender differences in a social, historical and organizational context. A qualitative approach was chosen to explore and identify HCPs value-based principles and organizational conditions promoting dignity-preserving care practice for these women. HCPs recognized the importance of sheltering the women’s identity, their sense of being home and acknowledged their personal preferences as value-based principles, whereas creating a flexible culture of care, establishing a functional professional collaboration and developing individualized plans of care, were crucial organizational conditions influencing the practice of dignity-preserving care.publishedVersio

Grindagutar på sjukeheim: Tilsette sin erfaring med kulturprosjekt

Grindagutar at nursing home: Employees experience with cultural project.Background: Culture activity contributes to holistic care for nursing home residents, and the employees are key personnel for success.Aim: Explore the employees’ experience putting culture projects into life in a nursing home.Methods: The material, based on four focus group interviews with employees in the nursing home, is categorized and analyzed through text condensation.Results: The culture projects created activity and were sources for thriving. However, not participating directly in the activity, the employees let the artists in, were available for them, and watched the patients during the performances. Their function as “door-openers/-keepers” resulted in hosting responsibility, leading to a position of confusion regarding the role as protectors for the patients. Main challenges were how to give feedback regarding whether the patients liked/disliked the performance, and the feeling of being trapped in a position as bystander rather than making the culture activity a common happening for the patients and the employees

Ernæringsstatus blant pasienter i sykehjem og i hjemmesykepleien kartlagt ved hjelp av Ernæringsjournalen

Artikkelen beskriver en studie hvor hensikten var å kartlegge og vurdere ernæringsstatus hos eldre pasienter i sykehjem og eldre som daglig mottar hjemmesykepleie.Background: malnutrition amongst the elderly may lead to serious consequences for the person and for the community in terms of need for public support. Assessment of the nutritional status is the first step regarding treatment and follow-up. Purpose: to use the Norwegian Directorate of Health Nutrition Assessment Tool to gain knowledge about the risks of malnutrition. Method: a descriptive study was performed among 532 patients ≥67 years admitted to nursing homes or receiving home care nursing. Data included assessment of the patients’ height, weight, Body Mass Index (BMI), and clinical data relevant for nutrition status. Results: BMI lower than recommended (BMI<24 kg/m2) was found among 50% of the patients, and 30% were reported in the category undernourished (BMI<22 kg/m2). Patients with lack of appetite and reduced ability to chew and/or swallow had significantly lower BMI than patients not suffering from these problems. Conclusion: systematic use of the nutrition journal seems appropriate to assess the nutrition status among elderly in order to offer adequate treatment and systematic follow-up

Besøk på sykehjem. En kvantitativ studie av sykehjemsbeboeres besøkshyppighet

Social contact is essential for the well-being of the nursing home residents.Visiting frequency in nursing homes is rarely investigated. The purpose of this study was to map the number of visits for nursing home residents. Nursing students collected data during their nursing home practice. 355 residents were included in this cross-sectional study. We explored the association between visit frequency and age, gender, type of department, activities of daily living (ADL) and length of stay. Data was analyzed using statistical analysis. The average number of visits was 8,8 per month. However, there were differences in visit frequency among the 15 institutions. Residents in the long-term department received fewer visits compared to the dementia and short-term department. Significant correlations between ADL function, gender, length of stay, age and frequency of visits were not found. More research to identify causes for the differences in visit frequency between different institutions is needed.Keywords: nursing homes; visiting; visit frequency; sykehjem; besøk; besøkshyppighe

«Eit givande, men krevjande lagspel for å betre tenestene». Brukarerfaringar frå samarbeidsforsking

“A precious, but challenging teamwork for improved healthcare”.  Service users´ experiences from participatory researchIn spite of identifying the importance of service user (SU) involvement in healthcare research, few studies define specific activities.  Although an effective infrastructure is acknowledged as key to enable SU’s equal contribution, we, in Norway, recognize a lack of their involvement in studies on Chronic Obstructive Pulmonary Disease (COPD). Consequently, a preliminary project was designed to implement a research-training programme for co-researchers and seek their collaboration in a participatory research study on COPD. This paper reports the co-researchers’ experiences using a focus group interview. Through content analysis, we describe coresearchers’ experiences, which recognize the importance and challenges of participatory research.These experiences demonstrate how acknowledgement, a fruitful climate for collaboration, new insight and practical arrangements promote involvement, whilst too extensive training and vague expectations may hinder involvement. Empowering equality of relationships and involvement, particularly for co-researchers with failing health and no former research training, demands thorough planning and organizing.  Samarbeidspartnarar: brukarar Nina Maria Dolmen, Aud Jenny Jensen, Sissel Stavøstrand og Steinar Valvik, spesialsjukepleiar Grete Berg Grimelid, Helse Førde, ergoterapeut Evy Aarsheim, Flora kommune, og sosionom og PhD stipendiat Tone Larsen, Helse Førde