Patients with cancer and their close relatives: experiences with treatment, care, and support.
ABSTRACT This article presents findings from a study of 536 patients with cancer and 473 of their close relatives from 15 different hospitals in Norway. The study assessed the satisfaction of both groups with the help and support they received from different sources such as family and friends, health personnel, and fellow patients. The results indicate that the patients received more support and information than their close relatives. The patients also were generally more satisfied with the support. Furthermore, the relatives seemed to underestimate the help and support provided to the patients. For both the patients and their close relatives, family and friends proved to be important sources of support. Regarding the public health services, almost 90% of the patients were very satisfied with the medical treatment. On the other hand, only an approximate 13% were very satisfied with information about alternative treatment and financial issues related to the disease. For the patients, the contact with fellow patients was highly valued. For most of the patients, this contact provided hope for the future, but it also had the potential for painful and sad feelings. The study was conducted in collaboration with the Norwegian Cancer Society to provide information that can be used for the guidance of health personnel and care of patients and their relatives.
Article: ICF Core Sets for breast cancer.[show abstract] [hide abstract]
ABSTRACT: To report on the results of the consensus process to develop the first version of both a Comprehensive ICF Core Set and a Brief ICF Core Set for breast cancer. A formal decision-making and consensus process integrating evidence gathered from preliminary studies was realized. Preliminary studies included a Delphi exercise, a systematic review, and an empirical data collection. After training in the ICF and based on these preliminary studies, relevant ICF categories were identified in a formal consensus process by international experts from different backgrounds. The preliminary studies identified a set of 317 ICF categories at the second, third, and fourth ICF levels with 150 categories on body functions, 44 on body structures, 77 on activities and participation, and 46 on environmental factors. Nineteen experts attended the consensus conference on breast cancer (7 physicians with at least a specialization in physical and rehabilitation medicine, 2 with a specialization in internal medicine and one radiologist, 4 physical therapists, 2 occupational therapists, one psychologist, one epidemiologist and one nurse). Altogether 80 categories (73 second-level and 7 third-level categories) were included in the Comprehensive ICF Core Set with 26 categories from the component body functions, 9 from body structures, 22 from activities and participation, and 23 from environmental factors. The Brief ICF Core Set included a total of 40 second-level categories with 11 on body functions, 5 on body structures, 11 on activities and participation, and 13 on environmental factors. A formal consensus process integrating evidence and expert opinion based on the ICF framework and classification led to the definition of ICF Core Sets for breast cancer. Both the Comprehensive ICF Core Set and the Brief ICF Core Set were selected.Journal of Rehabilitation Medicine 08/2004; · 2.05 Impact Factor
Article: The meaning and validation of social support networks for close family of persons with advanced cancer.[show abstract] [hide abstract]
ABSTRACT: BACKGROUND: To strengthen the mental well-being of close family of persons newly diagnosed as having cancer, it is necessary to acquire a greater understanding of their experiences of social support networks, so as to better assess what resources are available to them from such networks and what professional measures are required. The main aim of the present study was to explore the meaning of these networks for close family of adult persons in the early stage of treatment for advanced lung or gastrointestinal cancer. An additional aim was to validate the study's empirical findings by means of the Finfgeld-Connett conceptual model for social support. The intention was to investigate whether these findings were in accordance with previous research in nursing. METHODS: Seventeen family members with a relative who 8--14 weeks earlier had been diagnosed as having lung or gastrointestinal cancer were interviewed. The data were subjected to qualitative latent content analysis and validated by means of identifying antecedents and critical attributes. RESULTS: The meaning or main attribute of the social support network was expressed by the theme Confirmation through togetherness, based on six subthemes covering emotional and, to a lesser extent, instrumental support. Confirmation through togetherness derived principally from information, understanding, encouragement, involvement and spiritual community. Three subthemes were identified as the antecedents to social support: Need of support, Desire for a deeper relationship with relatives, Network to turn to. Social support involves reciprocal exchange of verbal and non-verbal information provided mainly by lay persons. CONCLUSIONS: The study provides knowledge of the antecedents and attributes of social support networks, particularly from the perspective of close family of adult persons with advanced lung or gastrointestinal cancer. There is a need for measurement instruments that could encourage nurses and other health-care professionals to focus on family members' personal networks as a way to strengthen their mental health. There is also a need for further clarification of the meaning of social support versus caring during the whole illness trajectory of cancer from the family members' perspective.BMC Nursing 09/2012; 11(1):17.