Grethe Eilertsen

Similarities and differences in the experience of fatigue among people living with fibromyalgia, multiple sclerosis, ankylosing spondylitis and stroke

AIMS AND OBJECTIVES To elucidate the experience of fatigue across several long-term illnesses, focusing on the similarities and differences. BACKGROUND Fatigue is common to many long-term illnesses, but it has been studied mainly within the context of a single illness; qualitative studies comparing the experience and its impact on daily life across different long-term illnesses are lacking. DESIGN Qualitative design. METHODS A secondary analysis was conducted of five original interview studies involving 95 persons with ankylosing spondylitis, fibromyalgia, multiple sclerosis or stroke. RESULTS Similarities and differences concerning experiences of fatigue were found across the studied long-term illnesses. All patients expressed the perception of having an unfamiliar body. Fatigue was also commonly expressed as unpredictable, uncontrollable and invisible to others. Differences were related to a constant versus a varying condition, a sudden and an uncontrollable sleepiness, a mutual reinforcement with pain and increased stress sensitivity. A lack of energy and a need for sleep and rest were common experiences, as was the impact on social relationships. There were also similarities regarding how the patients managed their daily life. The search for practical solutions and attitude adjustment differed with the fatigue characteristics. All patients felt a lack of understanding and disbelief from others. CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE Fatigue is commonly expressed by patients with long-term illnesses. Variations in experience are related to the type of diagnosis. The disparity between experiences influences how patients managed and adjusted to the conditions of everyday life. The illness-specific characteristics of fatigue warrant increased clinical awareness and may allow professionals to offer adequate information and establish effective methods of managing the condition. The feeling of invisibility and difficulty describing the experience of fatigue in particular highlights this need.

Sensory impairments in community health care: a descriptive study of hearing and vision among elderly Norwegians living at home

Background Hearing and vision impairments increase with age and are common risk factors for functional decline reduced social participation and withdrawal. Objective Describe the hearing and vision of home care patients older than 80 years. Methods Ninety-three older adults (80+ years) receiving home care were screened for hearing and vision in their homes. Data were collected using a HEINE Mini 3000® Otoscope to examine the eardrum and presence of earwax, an Entomed SA201-IV portable pure-tone audiometer to measure the pure-tone average (PTAV), a logarithm of the minimum angle of resolution chart to measure visual acuity (VA), and the Combined Serious Sensory Impairment interview guide. Results Slight and moderate hearing impairments were found in 41% and 47% of the population, respectively (mean PTAV =40.4 dB for the better ear), and 40% and 56% had impaired and slightly impaired vision, respectively (mean VA =0.45 for the better eye). The participants’ self-assessments of hearing and vision were only weakly correlated with PTAV and VA values. The visual function was significantly worse in men than in women (P=0.033). Difficulty in performing instrumental activities of daily living because of hearing and vision impairments was experienced by 17% of the participants, whereas 76% experienced no difficulties. When many people were present, 72% of the participants found it difficult to understand speech. Nearly 30% found it tiring to read, and 41% could not read very small print. Conclusion The patients’ self-assessments of their hearing and vision did not correlate strongly with their VA and PTAV scores. Asking the elderly about their overall hearing and vision ability is not sufficient for detecting sensory impairment, and asking more specific questions about what they could not hear and see was not an adequate indicator of the patients’ hearing and vision problems. To detect hearing and vision impairments among elderly home care patients, standardized measurements of their hearing and vision are necessary.

A biopsychosocial model of fatigue and depression following stroke

Poststroke fatigue (PSF) and poststroke depression (PSD) are both common and difficult sequelae following acute ischemic stroke (AIS). Two main perspectives to explain these sequelae are the biomedical perspective and the psychosocial perspective. Research has shown that PSF and PSD are undoubtedly associated with each other, although each can occur in the absence of the other. However, the nature of the relationship is unclear. For example, do stroke patients become fatigued because of being depressed, or do they become depressed because they are fatigued? Alternatively, is there a bidirectional relationship between these two sequelae, with each influencing the other? We propose a biopsychosocial model of PSF and PSD that supports the AIS-induced immune response and kynurenine pathway activation being related to fatigue but not (directly) to depression. We hypothesize that the risk of developing depression may be reduced if the experience of fatigue is acknowledged, and then addressed accordingly.

An intervention designed to improve sensory impairments in the elderly and indoor lighting in their homes: an exploratory randomized controlled trial

Background Vision and hearing impairments in the elderly (aged over 80 years) and poor indoor lighting conditions in a home-care setting are risk factors for functional decline, reduced social participation, withdrawal, and accidents. Objective We aimed to evaluate the changes in vision, hearing, and lighting conditions in the homes of participants aged over 80 years after implementation of a clinical intervention. Methods We undertook an exploratory randomized, controlled experimental study of sensory impairments and lighting conditions in the homes of elderly aged over 80 years who received home care. The intervention group (IG) received advice and encouragement to improve their vision, hearing, and indoor lighting conditions in the home, with a 10-week follow-up period. The control group (CG) received their usual care and underwent the same vision and hearing tests but were provided no intervention. Results Vision and hearing (self-assessed) and tested by Wilcoxon rank-sum test were significantly better (P=0.025 and P=0.008, respectively) in the IG after the intervention and follow-up. The test between the groups showed a significance of P=0.026 for visual acuity and P=0.098 for pure-tone average. The maximum and minimum lighting levels were significantly improved in the IG after the intervention (P=0.002 and P=0.039, respectively) but were unchanged in the CG. Conclusion Several of the IG participants did not follow all of the advice; however, among those who did, vision, hearing, and lighting conditions were all significantly improved. It appears that modest interventions have great potential for improving vision and hearing. Older patients in the home-care setting cannot be expected to take the necessary action to improve their sensory impairments by themselves. They require close monitoring, help from a specialist, and help to improve the indoor lighting conditions in their homes.

Happy Living in Darkness! Indoor Lighting in Relation to Activities of Daily Living, Visual and General Health in 75-Year-Olds Living at Home

ABSTRACT Lighting has been identified as a significant environmental attribute for promoting vision and general health among older people, enabling successful aging at home, but it has received little attention in the literature. Indoor lighting levels, self-reported vision and general health, and activities of daily life were measured in 114 healthy 75-year-old Norwegians. Despite very low levels of indoor lighting, the subjects were happy and healthy. There is a large discrepancy between self-assessed health and recommended lighting levels, and low awareness of the effect of lighting on age-related vision loss or daily living in the future. Knowledge of how to utilize indoor lighting to ensure healthy and safe aging in the home is needed.

A Valuable but Demanding Time Family Life During Advanced Cancer in an Elderly Family Member.

This study explores experiences of elderly patients with cancer and their family members with regard to what is important and difficult in the family relationships during the palliative phase. Family group interviews were conducted with 26 families. The data were analyzed using qualitative content analysis. Three themes emerged: “Ensuring a positive final time together,” “Avoiding tension and conflict,” and “Concealing thoughts, feelings, and needs.” The main theme, “A valuable but demanding time,” indicates that although families find this phase of life challenging, they emphasize the importance of ensuring that this time is spent together in a positive way as a family.

Stories of pain and health by elderly Pakistani women in Norway

Background: This ethnographic study investigates the stories of elderly Pakistani women living in Norway. Migration studies indicate that elderly migrant women are passive, ill victims caught in a marginalized position due to age, ethnicity and gender, and thus have little access to opposition and agency. To broaden the picture it is necessary to develop an innovative approach to understand what is implicated in the process of migration. The importance of considering life conditions that surrounds potential health promotion behaviors of immigrants is stressed by several researchers. However, up to now limited research guided by this perspective has been done in Norway. Therefore, this study explored how elderly Pakistani women in Norway promote their health and well-being through some distinct social interactions. The intention is to bring awareness to how health, even by so-called disadvantaged social groups, may take place. These practices are important to take into consideration when developing health-promoting policies for elderly immigrants. Methods: An ethnographic study of 15 Pakistani women, aged 53-75, was carried out in a multisided fieldwork in Oslo using participant observation and ethnographic interviews. The analytical approach was inspired by the constructivist theoretical framework of narrative ethnography. Results: The elderly Pakistani women in Norway construct stories of living in-between cultures and experiences of acculturative stress caused by being elderly, immigrants and women. However, this analysis also suggests that through distinct social relationships, primarily in the context of a voluntary organization, elderly Pakistani women do health by the way they interact and construct a repertoire of social identities. Conclusions: The healing practices taking place among elderly Pakistani women may counteract the negative health outcomes associated with age, migration and gender. Implications for immigrant health-promoting policy in Norway may be to increase the establishment and allocate funds to sustain voluntary organizations run by and for immigrants.

Lighting old age--how lighting impacts the ability to grow old in own housing, part one.

A functionally optimized housing development designed to meet the demands in different phases of living (universal design) may result in the elderly living longer in their own homes. In this study a total of 165 healthy persons were included out of a total of approximately 320 persons turning 75 years of age in 2009 living in Drammen municipality. They went through a quantitative, questionnaire-based interview (including VAS and SF-36) and 20 participants were then selected for a qualitative in depth interview. The lighting conditions in the kitchen, living room, bathroom, bedroom and staircase were measured according to a simplified procedure. The overall lighting conditions were evaluated to be rather low, with means between 35 and 121 Lux, but the quantitative interviews showed that on most questions the scores were rather low, indicating that the overall thriving is good regardless of rather low lighting values.

Women’s experience of acute skin toxicity following radiation therapy in breast cancer

Purpose Acute skin toxicity is experienced by 70%–100% of patients receiving radiation therapy following breast cancer. Most studies focus on skin appearances and treatment of such reactions, not the experience. Increased knowledge about patients’ experience will contribute to provide tailored patient care. Thus, the purpose was to investigate patients’ experiences of acute skin toxicity following radiation therapy for breast cancer. Patients and methods Semi-structured in-depth interviews were conducted with seven women, 2–3 weeks post-treatment. Five broad areas of inquiry were investigated: 1) experiences from the development of skin reactions; 2) experiences in day-to-day life; 3) coping strategies; 4) experiences of information; and 5) experiences from the aftercare. The interviews were analyzed in line with qualitative content analysis. Results The main theme “Not so bad itself, but it comes on top of everything else” was identified, based upon three categories: 1) unique experience of the skin; 2) it is something about the psychological aspect; and 3) experience of information. Conclusion Acute skin toxicity following breast cancer treatment may affect many dimensions of patients’ lives. Experiences are complex, individual, and not necessarily consistent with visible changes of the skin. A holistic approach is necessary to provide treatment and support according to patients’ individual needs.