This study investigated the relationship between patients' self-reported illness, daily afflictions, and the frequency of home nursing care, and whether patients' coping resources influenced the allocation of care. DESIGN, SAMPLE AND MEASUREMENTS: A cross-sectional survey was adopted. Two hundred and forty-two people aged 75 years and above receiving home nursing care participated in the study. Binary logistic regression model was used to test the effects of the independent variables on home nursing care.
Poor capacity to perform activities of daily living and high level of education were directly associated with a high frequency of home nursing care. Lack of perceived social support affected the amount of home nursing care allocated only when feelings of loneliness were connected with poor activities of daily living functioning. Interaction effects revealed that perceived social support influenced the amount of home nursing care in persons with higher education, in persons with low education, no such association were found. No associations were found between coping resources and home nursing care.
Impaired capacity to perform activities of daily living was the main reason for care allocation. Education was associated with more formal care. Patients with low perceived social support combined with a low education level was a particularly vulnerable group.
Evaluating rehabilitation programmes from the patient's perspective is much needed, as the patients are the most important stakeholders in the health care system. A comprehensive rehabilitation programme, COPE-ICD programme, consists of exercise training and nursing consultations during a one year period post ICD implantation. The purpose of this paper is to describe the experience and meaning of participating in a comprehensive ICD-specific rehabilitation programme.
Qualitative interviews were conducted with 10 patients representing the participating population, and later transcribed. The analysis was inspired by Ricoeur's theory of interpretation, which consists of three levels: naive reading, structured analysis and critical interpretation and discussion.
The overall concept was that participating in the COPE-ICD programme meant feeling inspired and secure through individualized care. Four themes emerged: Knowledge: patients gained much needed understanding; Physical attention: patients interpreted body signals and adjusted their exercise behaviour; Trust: patients regained trust, felt secure and dared to live again; Strategies of living: patients' coping was supported through reflection and professional dialogue, and they dealt with the risk of shock or death.
Participating in an ICD-specific rehabilitation programme can make patients feel inspired and secure through individualized care. They discover that they have to rethink some of their strategies of living and they gain support in the reflection and coping needed for that. Patients gain insight and they develop a special physical attention whereby they continue healthy activities through interpreting body signals and adjusting exercise behaviour. They learn to trust their body again.
BACKGROUND: Fatigue is a common and distressing symptom in chronic heart failure (CHF). Most of the current methods for evaluating patients' symptoms fail to consider the meaning or importance that these symptoms have for the patient. AIM: To illuminate the lived experience of fatigue among elderly women with CHF. METHOD: Narrative interviews were conducted with 10 women with CHF, aged 73-89 years. Interviews were analysed with qualitative content analysis. RESULTS: The findings are presented in two themes and five subthemes. The first theme, 'living with the loss of physical energy', was based on three subthemes describing the experience of fatigue: 'experiencing a substantial presence of feebleness and unfamiliar bodily sensations', 'experiencing unpredictable variations in physical ability', and 'needing help from others in daily life'. The second theme, 'striving for independence while being aware of deteriorating health', describes how the women managed their life situation; it was based on two subthemes: 'acknowledging one's remaining abilities', and 'being forced to adjust and struggle for independence'. CONCLUSIONS: Fatigue was experienced as loss of physical energy, leading to discrepancies between intention and capacity. The will to reduce dependency on others involved a daily struggle against fatigue.
The aim of the study was to describe interactions within the family and between them and professionals on a routine visit at a paediatric oncology outpatient clinic where the visiting child was likely to be fearful. Observations were performed. Data were analysed by qualitative content analysis. The behaviours most frequently observed as expressing fear were being quiet, withdrawn or providing detailed descriptions of experiences. Within the theme ;Recognition of the fear', an attentive attitude to the fear was traced; fear was confirmed and cooperation was seen. Although many efforts were made to meet the fear, this was not always successful. Within the theme ;Lack of attention to the fear', the fear was not in focus due to parental worries and concerns about the child's health, and organizational disturbances. The results can serve as a basis for collegial reflections of how to handle fear in children with cancer.
Crohn disease is a chronic inflammatory bowel disease of unknown etiology. The chronic, relapsing nature of Crohn disease produces physical, psychological, and social stress. The disease occurs early in life, and the effects of Crohn disease on daily life are associated with symptom burden; thus, managing their disease and coping with its impact is a lifelong process for sufferers. This study was undertaken to identify and describe the meaning of quality of life in patients with Crohn disease. Using a grounded theory methodology, 11 interviews were performed with 6 men and 5 women, 29-83 years of age, all suffering from Crohn disease. The experience of quality of life was associated with limitations in daily activity, the major theme that emerged from the analysis. Quality of life varied depending on how the patient managed limitations related to the symptoms of the disease. The categories of self-image, confirmatory relations, powerlessness, attitude toward life, and sense of well-being were conceptualized as the dominant themes derived from the data. When caring for these patients, it is important to identify limitations and provide support so that patients are able to maintain a daily life that can be perceived as normal and routine.
Although medical and technological advances have extended survival rates through ever more effective acute clinical management for people with spinal cord injuries, the links between rehabilitation and recovery are less well understood. With ever shorter length of stays in inpatient rehabilitation, the focus of support has been shifting toward outpatient support pathways. In this article, the narrated rehabilitation experiences of two young men with comparable spinal cord injuries in the United States and Denmark are contrasted. From their biographical narratives, we examine the sociocontextual factors that underpin the rehabilitation pathways in two quite distinctive social and healthcare environments. Our analysis raises questions about the importance of factors such as readiness, timeliness, duration, and appropriateness of rehabilitation to facilitate independent living, achieve meaningful recovery, and provide equitable access to the goods and services afforded by society.
Perceived health-related quality of life (QOL) of 113 adult people living with HIV/AIDS (PHA) attending an outpatient hospital clinic was assessed upon initial registration using the Medical Outcomes Study SF-36. QOL ratings on both physical functioning and psychological well-being aspects of the SF-36 were lower than for the general population, especially among PHA in the sample who were symptomatic or for whom AIDS had developed. Although not compromised in terms of physical functioning, asymptomatic PHA had well-being QOL scores comparable to other chronic medical conditions. In general, demographic, social, and many of the health and immune status variables examined were not significantly related to QOL. Number of symptoms was negatively associated with both physical status and emotional well-being dimensions of QOL. PHA in the asymptomatic stage of HIV infection reported better QOL than symptomatic/AIDS patients on few QOL dimensions. Mean QOL ratings did not significantly differ between AIDS patients and those with symptomatic (non-AIDS) infection. These findings suggest that although becoming symptomatic has a significant impact on a majority of dimensions of QOL, being diagnosed with HIV affects well-being dimensions the most. An emphasis on support for both adjusting to diagnosis and symptom management is as important as viral suppression in maximizing QOL for PHA.
Family plays an essential role in supporting the patient with cancer, however, relatively little attention has been given to understanding the strengths and resources of the family unit across different settings and countries. This study aims to investigate the strengths and resources of patients and family members in Australia and Denmark.
Using a descriptive, cross-sectional design, 232 patient and family participants from inpatient and outpatient oncology services in Australia and Denmark completed paper based surveys that included the Family Hardiness Index (FHI) and Family Crisis Orientated Personal Evaluation Scales (F-COPES), together with demographic and health information.
The family's appraisal of the cancer and ways the family worked together predicted the level of external resources used to manage their circumstances.
After a cancer diagnosis patients and family respond in different ways related to their family functioning. There is a need for nurses to work closely with the family to understand their strengths and resources, and tailor support and information for family to promote optimal patient outcomes.