Living with persistent rheumatoid arthritis: a BARFOT study.

AIM AND OBJECTIVE: To describe and understand the meaning of living with persistent rheumatoid arthritis. BACKGROUND: A considerable number of patients with rheumatoid arthritis live with an ongoing active and symptomatic illness despite access to potent antirheumatic treatment. There is, however, a lack of knowledge about the meaning of living with this severe long-term illness, defined as persistent rheumatoid arthritis. DESIGN: A descriptive design based on a hermeneutic phenomenological method was used. METHODS: Ten adults with persistent rheumatoid arthritis and at least five years disease duration were interviewed. The interviews were analysed according to van Manen's method. RESULTS: Living with persistent rheumatoid arthritis revealed four overall themes: an existence dominated by painful symptoms and treatment, radical changes and limitations in one's life, a continual struggle to cope with one's life and to master the illness, and a dependency on those who are close by and the world around. The lifeworld was affected to a varying extent and in various ways by the illness but also by the dependence on its treatment and care that was not experienced as sufficiently meeting needs in terms of security, access to and coordination of care as well as team and rehabilitation services. CONCLUSIONS: Persistent rheumatoid arthritis and its treatment entail a radical effect on the person's life and quality of life. Current ordinary rheumatology care does not seem to meet the individual needs of the person with persistent rheumatoid arthritis in an optimal way. RELEVANCE TO CLINICAL PRACTICE: A greater knowledge about and understanding of the person who lives with persistent rheumatoid arthritis is important for facilitating the development of care and the relief of suffering. A holistic alternative to conventional clinical practice, such as person-centred care, could be tested as an innovative model of care. Our findings might serve as material for educational and counselling purposes for healthcare professionals.

How do nurses in palliative care perceive the concept of self-image?

BACKGROUND: Nursing research indicates that serious illness and impending death influence the individual's self-image. Few studies define what self-image means. Thus it seems to be urgent to explore how nurses in palliative care perceive the concept of self-image, to get a deeper insight into the concept's applicability in palliative care. AIM: To explore how nurses in palliative care perceive the concept of self-image. DESIGN: Qualitative descriptive design. METHOD: In-depth interviews with 17 nurses in palliative care were analysed using phenomenography. The study gained ethical approval. RESULTS: The concept of self-image was perceived as both a familiar and an unfamiliar concept. Four categories of description with a gradually increasing complexity were distinguished: Identity, Self-assessment, Social function and Self-knowledge. They represent the collective understanding of the concept and are illustrated in a 'self-image map'. The identity-category emerged as the most comprehensive one and includes the understanding of 'Who I am' in a multidimensional way. CONCLUSION: The collective understanding of the concept of self-image include multi-dimensional aspects which not always were evident for the individual nurse. Thus, the concept of self-image needs to be more verbalised and reflected on if nurses are to be comfortable with it and adopt it in their caring context. The 'self-image map' can be used in this reflection to expand the understanding of the concept. If the multi-dimensional aspects of the concept self-image could be explored there are improved possibilities to make identity-promoting strategies visible and support person-centred care.

Dependency in elderly people newly diagnosed with cancer--a mixed-method study.

PURPOSE: This study, based on data from an empirical investigation, combines quantitative and qualitative approaches in a mixed-method design to explore dependency in elderly people newly diagnosed with cancer. METHODS AND SAMPLE: 101 elderly people newly diagnosed with cancer were included in the quantitative part, with 16 in the qualitative part. A questionnaire concerning quality of life and dependency issues was developed. For the qualitative part, open-ended interviews were conducted to get closer to the experience of dependency. RESULTS: Combining the two methods was seen as complementary. Involvement of the patient in decision-making related to contact with the primary and secondary health-care systems is an important element in reducing the perception of dependency and maintaining the Quality of Life (QoL) of elderly cancer patients. A more precise intervention in this patient population can be achieved by assessing, Activities of Daily Living (ADL) in the elderly. Receiving assistance from children seems to increase perceived dependency and to affect QoL negatively. CONCLUSIONS: The results of this mixed-method study indicate that dependency had a negative influence on the elderly with cancer. Being dependent on others was experienced as deterioration. Fatigue represents a significant risk factor for decreased functional ability and is experienced as a reminder of being old and the situation as being out of control. Patients may benefit from health-care professionals acquiring a complete picture of dependency and cancer-related fatigue in the elderly through a systematic assessment, where for example, functional limitations related to fatigue can be determined.

Sickness absence among cancer patients in the pre-diagnostic and the post-diagnostic phases of five common forms of cancer.

PURPOSE: The purpose of this study was to observe sickness absence before and after the cancer diagnosis among cancer patients with five common forms of cancer. METHODS: Using cohort data, we observed sick leave in the pre- and post-diagnostic phase among patients with colon, rectal, breast, prostate, or lung cancer (n = 2,738). We also identified reference subjects without cancer (total n = 12,246) who were individually matched for age and gender for each specific cancer cohort in order to compare sickness absence between patients with a specific form of cancer and the background population without cancer. RESULTS: Lung cancer patients had the highest increase in sick days both pre- and post-diagnosis and prostate cancer patients had the lowest increase. Irrespective of the form of cancer, cancer patients had significantly more sick days in the post-diagnostic phase compared to their reference subjects, ranging from 5 (prostate cancer) to 12 times the amount of sick days (colon and lung cancer). One year post-diagnosis, less than half of the cancer patients were on sick leave, except for lung cancer patients where 63% were still on sick leave. CONCLUSION: Sick leave among cancer patients seems related not only to the cancer diagnosis and its treatment but also to the prodromal illness in the pre-diagnostic phase, especially for forms of cancer with heavier symptom burden such as colon and lung cancer. Although cancer results in substantial increase in sick leave, it is important to acknowledge that a major part of cancer patients return to work within 1 year after the cancer diagnosis.

Sick leave of spouses to cancer patients before and after diagnosis.

BACKGROUND: The impact of cancer on spouses of cancer patients may be considerable in many aspects. Our objective was to evaluate sick leave in spouses of cancer patients before and after the diagnosis. MATERIAL AND METHODS: Using Swedish population-based registries, we studied sick leave of spouses to patients with newly diagnosed colon, rectal, lung, prostate, or breast cancer. We identified the cancer patients via the Swedish Cancer Registry and obtained information of their spouse through linkage with the population register. We assessed the number of sick leave episodes and sick days one year before until one year after the spouses' cancer diagnosis by cross-referencing with Swedish Social Insurance Agency data. We also compared the number of sick days of spouses with the general population adjusted for age, sex and partner status. RESULTS: In general, spouses (N=1 923) to cancer patients had an increase in the frequency of new episodes of sick leave in the months before and after the cancer diagnosis. Spouses of lung cancer patients had most sick leave episodes, and the largest number of sick days per person. In comparison to the general population, spouses in the lung cancer group also had the highest standardised sick day ratio 1.76; 95% confidence interval 1.24, 2.40. The corresponding risk for spouses in other groups of cancer was not significantly increased. DISCUSSION: In Sweden there is often increased sick leave of spouses to cancer patients. It may be due to emotional stress and physical reactions that follow with cancer which needs to be further explored in order to provide adequate support and care.

Being next of kin to an elderly person with cancer.

OBJECTIVES: The aim of the study was to illuminate the experience of life as next of kin to an elderly person with cancer. BACKGROUND: Being next of kin to an elderly person with cancer and its impact on everyday life has been sparsely researched. Such understanding is needed to support both the sufferers and their relatives in dealing with issues arising after a cancer diagnosis in old age. DESIGN: A qualitative study was used to illuminate the experience of next of kin of elderly people with cancer. METHOD: In total, 16 (mean age 61, range 42-80) persons were interviewed. Open-ended interviews were used to get closer to their experiences. Manifest and latent content analysis were used. FINDINGS: Two main categories, Transformations of roles and Changed frames of mind, were identified, as well as four subcategories. The study showed that the cancer activated perceptions in the next of kin about ageing and growing old. The onset of the disease was a turning point, i.e. the disease highlighted that the patient had become old and the combination of this and the disease reinforced the negative image of old age in general. The next of kin found that the diagnosis of cancer was followed by role changes within the family. It awoke feelings of anger and doubt and made the next of kin stop and think about what is really important in life. CONCLUSION: With the onset of a serious illness, all next of kin are greatly affected in many ways but especially by changes in their roles, without, however, being prepared. The phenomenon of time seems to have significant meaning to the next of kin, although it may be perceived differently from the perspective of healthcare professionals than from that of next of kin.

Influence on the health of the partner affected by tumor disease in the wife or husband based on a population-based register study of cancer in Sweden.

PURPOSE: To examine health care use and health care costs among partners of persons with cancer. PATIENTS AND METHODS: Partners of patients with colon, rectal, lung, breast, and prostate cancer (N = 11,076) were identified via linked data from the Tumor Registry of Southern Sweden and Census Registry of Sweden. Health care use, total costs of health care, and diagnosis of the partner were studied before and after diagnosis of the cancer patient. RESULTS: Health care use for partners increased in terms of in-patient care after the cancer diagnosis. A significant increase was seen the second year for partners of patients with colon cancer (risk ratio [RR], 1.55; 95% CI, 1.28 to 1.87) and lung cancer (RR, 1.50; 95% CI, 1.26 to 1.79). Psychiatric diagnoses increased after the cancer diagnosis in the total sample, with a significant increase for partners of colon (RR, 2.66; 95% CI, 1.71 to 4.22), lung (RR, 3.16; 95% CI, 2.23 to 4.57), and prostate cancer patients (RR, 1.68; 95% CI, 1.32 to 2.15). Costs of care increased more than the consumer price index the two years after the cancer diagnosis. Costs of care increased most for male partners and especially for younger male partners (age 25 to 64 years) of patients with colon, rectal, and lung cancers. CONCLUSION: The results showed increased health care costs and an increase in psychiatric diagnoses after the cancer diagnosis among partners of cancer patients. Further research is needed to learn more about the situation of the partner and to identify persons at risk of psychiatric morbidity. Knowledge is also needed on how to support the partner in the most efficient way.

Being given a cancer diagnosis in old age: a phenomenological study.

OBJECTIVES: The aim of the study was to illuminate the lived experience of being given a cancer diagnosis in old age. BACKGROUND: Little research has been done on the experience of elderly people developing cancer and the impact of the illness on their lives. Such knowledge is needed to support elderly people in dealing with issues arising after cancer is diagnosed. DESIGN: A descriptive phenomenological method was used to investigate the phenomenon "the lived experience of being given a cancer diagnosis in old age". PARTICIPANTS: In total, 16 persons (aged 65+, mean age 76, range 68-83) with cancer were interviewed, all referred to the same oncology outpatient clinic in Copenhagen County. METHOD: Open-ended interviews were used to get a clear understanding of the experience of a cancer diagnosis in old age. Giorgi's phenomenological analysis was used. FINDINGS: The findings showed that the essential meaning of the lived experience was "Illness as a turning point marking old age". This main essence was represented overall by three essences: "Illness means losing control", "Disturbing the family balance" and "Life and death suddenly apparent". These three essences were manifested through seven constituents: growing old in the context of illness, becoming a patient with cancer, everyday life being controlled by bodily limitations, managing family reactions, becoming conscious about dying and death through illness experience and retaining hope, and enjoying life. CONCLUSION: It is important in clinical practice, to identify the specific meaning the turning point has for an elderly person with cancer, and to understand the particular approach he or she uses to handle the awareness of being old.

The meaning of posttraumatic stress-reactions following critical illness or injury and intensive care treatment.

Traumatic events connected with a critical condition and treatment in the intensive care unit (ICU) may result in subsequent posttraumatic stress-reactions. The aim of this phenomenological study was to describe the meaning of posttraumatic stress-reactions as experienced by individuals following a critical illness or injury and intensive care. Fourteen informants, testing positive for posttraumatic stress-reactions as a clinical concern, were interviewed. The data was analysed following the principles indicated by Giorgi [Giorgi A. The theory, practice, and evaluation of the phenomenological method as a qualitative research procedure. J Phenomenol Psychol 1997;28:235-61]. The essence of the phenomenon of posttraumatic stress-reactions was understood as a transition to a life-situation beyond control, where the traumatic experiences have a profound impact and are ever-present. The variations of the phenomenon presented themselves as a need to make sense of the traumatic memories, which live on; being haunted by the trauma; a need to escape; distress and strain in the life-situation; transformation of self and, finally, interactions with others affected. The need for caring strategies and support is emphasised, both in the ICU and afterwards, thus preventing or alleviating some of the suffering.

Quality of life in old people with and without cancer.

The aim was to investigate the influence of age and gender on quality of life (QoL), complaints, and the presence and nature of self-reported diseases in persons aged 75 and older with cancer (n = 150), compared to a matched group without cancer (n = 138). A second aim was to investigate factors associated with poor QoL in people aged 75 and older. QoL was measured with Short Form (SF-12) and European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-30). The study showed that the cancer group had lower (poorer) scores in different domains of QoL, more complaints, and more self-reported diseases than the group without cancer. In both groups, oldest old persons had more complaints than the youngest old. The cancer group had significantly more complaints than the noncancer group. In the youngest old, the cancer group had significantly more complaints than the comparison group. Women with cancer reported the poorest QoL compared to men with cancer and women without cancer. Receiving help for daily living from others and degree of complaints were associated with poor QoL for both the physical and mental component scores (PCS, MCS) of the SF-12. Thus, caregivers should be aware that the most vulnerable cancer patients are women, and that the complaints by cancer patients have implications for QoL especially among the youngest old.

Home care with regard to definition, care recipients, content and outcome: systematic literature review.

In spite of the fact that home care has grown considerably during the last few years and will continue to grow even more in the future, home care as a phenomenon and a concept is not clearly defined. The aim of this study was to review the empirical literature for the description of home care as a phenomenon and as a concept, especially with regard to who the care recipients are, what actions and assessments are performed and what effects are achieved for the care recipient in terms of functional health status and quality of life (QoL). Twenty-six relevant studies meeting the inclusion criteria and requirements for methodological quality were identified. The phenomenon of home care is described through content, outcome and objectives. The content of home care involved a range of activities from actions preventing decreased functional abilities in old people to palliative care in advanced diseases. The outcome had two different underlying foci: (1). for the benefit of the patient based on the assumption that being cared at home increases their QoL, (2). in the interests of the society, to minimize hospital care by moving activities to the home of the patient. The objectives were found to be aiming at improving the QoL and/or maintaining independence, by means of actions and assessments, based on the patient's needs, undertaken to preserve and increase functional ability and make it possible for the person to remain at home. In conclusion, home care as a phenomenon was the care provided by professionals to people in their own homes with the ultimate goal of not only contributing to their life quality and functional health status, but also to replace hospital care with care in the home for societal reasons; home care covered a wide range of activities, from preventive visits to end-of-life care.

The experiences of older people living with cancer.

Nursing care for older people with cancer requires an understanding of their history and current needs from both an individual and generalized view. The aim of this study was to investigate the experience of older people living with cancer and the way it affects their daily life. During the study, 41 individuals 75 years of age and older (mean age, 83 years) who had a cancer diagnosed within the past 5 years were interviewed in their homes. After verbatim transcription, the interviews were analyzed with latent content analysis. Four main categories were identified: 1) living with cancer means bodily, mental, social, and existential experiences; 2) being aware of the disease or not; 3) handling of daily life; 4) feeling affirmation or rejection from healthcare professionals. Experiences of daily life with cancer were influenced by the combination of old age, comorbidities, and the perception of current and previous life. This combination more or less affected all aspects of life. The power to choose the approach to daily life with cancer, the disease, and its treatment proved to be crucial for handling cancer and the outcome. It seems that the main role for healthcare professionals is to empower the older person to choose for himself or herself. Furthermore, it seems to be important that healthcare professionals support older persons in their choices, whether they choose to take an active part in understanding the disease and handling of daily life or whether they decide to be more passive and hand themselves over to the healthcare system.