Sirkka Lauri

Cancer Patients’ Views and Experiences of Participation in Care and Decision Making

The purpose of this study was to explore the views and experiences of adult cancer patients about patient participation in care and decision making and the preconditions for this participation. The data were collected by means of focused interviews; in addition the patients completed depression and problem-solving instruments. The sample comprised 34 cancer patients from the haematological and oncological wards of one university hospital in Finland. The results revealed considerable variation in the patients’ views on their participation in care and decision making. Some of the patients understood participation either in terms of contributing to the decision making or in terms of expressing their views on treatment options. Some considered that their participation in care was impossible. Patient participation in care and decision making was promoted by good health, access to information, assertiveness, good interactive relationships with nurses and physicians, and encouragement by nurses and physicians to participate. Factors restricting such patient participation were poor health, ignorance, anxiety, age, time pressures of staff, lack of time, high staff turnover and poor interactive relationships. With regard to participation in medical decision making, the patients were divided into three groups: (1) active participants (n = 7), (2) patients giving active consent (n = 9), and (3) patients giving passive consent to medical decisions (n = 18).

CANCER PATIENTS' REPORTED EXPERIENCES OF SUFFERING

This study describes the nature and content of experiences of suffering by patients with incurable cancer. The main body of data was collected in interviews. A structured questionnaire was administered for additional information. Three different dimensions were identified in patient experiences of suffering: physical, psychologic, and social. Suffering has a physical foundation, which was divided into two categories: that caused by the illness itself and that caused by treatment of the illness. The primary sources of physical suffering were fatigue, pain, and the side effects of chemotherapy. The causes of psychologic suffering lie in the physiologic changes associated with the disease and in the imminence of death. Psychologic suffering was most typically manifested in depression, which most of the patients suffered during the initial stages of the disease, when the disease metastasized, and when they were in a particularly poor condition. General deterioration and fear of infections very much restrict the social life of cancer patients, causing them to withdraw into their home or the hospital.

Patient participation in decision making about care.

The purpose of this study was to find out how cancer patients perceive patient participation in decision-making and to see which factors in their view facilitate and restrict participation. Data were collected in focus group interviews with 25 patients, most of whom had breast cancer. Data interpretation was based on the method of qualitative content analysis. The results showed that patients, nurses and physicians all play a part in terms of how patients participate in decision-making. Patients defined participation in decision-making in terms of asking questions, obtaining/providing information and choosing from/presenting different alternatives. Among the factors that were thought to promote participation in decision-making were the patients activity, the presence of a primary nurse/physician, the encouragement of nurses and physicians to participate, the treatment of patients as equals, and nurses and physicians having enough time for patients. As for factors hindering participation in decision-making, reference was made to patient ignorance, physical and mental imbalance and shyness on the part of the patient. Obstacles to participating in decision-making that originated in the nurses and physicians were the tendency for them to treat patients as objects, to fall in a routine, problems with information dissemination and lack of time.

Nurses' knowledge about pharmacological and nonpharmacological pain management in children

The purpose of this study was to investigate the knowledge base and practices of Finnish nurses in the area of children in pain. The convenience sample consisted of 265 nurses working on childrens wards in university hospitals. Data were collected using an instrument designed for the study. The results showed that there remain gaps in the knowledge base of nurses with regard to both pharmacological and nonpharmacological pain management in children. The education and the area of expertise were significant influences on knowledge scores. Nurses used a fairly wide range of nonpharmacological pain alleviation methods but most of these were such that the nurse was in an active role and the child was passive. There is a clear need for further education. Nurses should take a more active role in seeking new information and also should be encouraged to use nonpharmacological methods that let the children be active participants in their own care.

Fears associated with pregnancy and childbirth — experiences of women who have recently given birth

OBJECTIVE To describe fears associated with pregnancy and childbirth and to see whether women who have recently given birth feel that their fears were justified. DESIGN A qualitative study. Data were collected by semi-structured interviews. Data interpretation was based on the method of content analysis. SETTING The maternity units of two university hospitals in Finland. PARTICIPANTS A convenience sample of 20 women, 10 primiparae and 10 multiparae. The interviews were held 2 or 3 days after childbirth. FINDINGS The most common fears associated with pregnancy and childbirth were concerned with the babys well-being, the course of pregnancy, and childbirth. The fears found expression in different kinds of behaviours, emotions and physical sensations. Many of the participants felt that their fears had not been justified, but some maintained that their fears had been justifiable. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE There was much inter-individual variation in the fears associated with pregnancy and childbirth. It is important that diagnosis during pregnancy is undertaken sensitively and that midwifery staff remember that pregnant women may have very serious fears associated with pregnancy and childbirth. The participants in this study felt that fears associated with pregnancy and childbirth also had positive meanings. It may not be essential to try to protect women against these fears or to remove them altogether, but to give every pregnant women the opportunity to deal with her own fears and to obtain the help she needs in her situation.

Giving birth. Perceptions of Finnish childbearing women.

PURPOSE To describe the lived experience of childbirth with women giving birth in Finland. DESIGN Phenomenology. METHODS Twenty Finnish women who had recently given birth were interviewed within 2 weeks following childbirth, sharing their perceptions of meaning of their childbirth experiences. Culturally appropriate strategies for qualitative data collection were employed. Trustworthiness of the data was ensured. RESULTS The richness and diversity of the childbirth experience emerged from the data. One theme identified was a sense of awe at the creation of a new life within the context of birth as a bittersweet paradox. A strong sense of maternal confidence or self-efficacy was identified, which influenced the womens perception of and management of childbirth pain. Feelings of self-actualization were articulated as Finnish women successfully negotiated a challenging life event. CLINICAL IMPLICATIONS Perinatal nurses should increase their sensitivity to the socio-cultural context of giving birth by acknowledging womens experiences as legitimate sources of knowledge.

Ethical reasoning associated with the feeding of terminally ill elderly cancer patients. An international perspective.

An international nursing research study examined the ethical decision-making of “good and experienced” registered nurses in eight countries. The subjects were asked about their decision to feed or not to feed a hypothetical terminally ill, mentally alert, elderly cancer patient who refuses to eat. Cultural variations were demonstrated in the decisions as well as differences in ethical justification. The majority of nurses who would not feed appeared to use the principle of autonomy, whereas nurses who would feed the patient used beneficence as justification. Conditions under which nurses would change their decision to either feed or not feed the patient against her will included doctors orders and lack of peer support for the decision. The majority of nurses clearly experienced a dilemma.

Cultural Perceptions of Childbirth: A Cross-Cultural Comparison of Childbearing Women

The purpose of this comparative cross-cultural study was to describe the cultural/religious perceptions of the childbirth experiences of selected childbearing women. Finnish Lutheran womens beliefs and perceptions of childbirth were compared with those of Canadian Orthodox Jewish and American Mormon women. Methodological triangulation was achieved through semistructured, open-ended interviews and use of the Utah Test for the Childbearing Year (UTCY). Canadian Orthodox Jewish women showed a significantly higher level of reliance on authority figures to ensure positive outcomes and significantly less active participation in childbirth care decisions. The Finnish Lutheran women showed less valuing of childbearing and childrearing, which may be related to a less active religious belief system and the view by Finnish women that motherhood is only one of a multiplicity of roles viewed as important. There is a need to understand and appreciate the cultural beliefs and values of childbearing women to facilitate more culturally sensitive and holistic nursing care.

Nursing activities and outcomes of care in the assessment, management, and documentation of children's pain

This study describes how assessment and documentation of childrens acute postoperative pain is managed by nurses in university hospitals in Finland. A survey was conducted of 303 nurses working in childrens wards of university-affiliated hospitals, and at the same time a retrospective chart review of 50 consecutive cases of operation of acute appendicitis was carried out. Charts were analyzed by content analysis, and the results of the survey are reported with percentage distribution and nonparametric statistical calculations. The results indicate that nurses assess pain mainly by observing the childs behavior and changes in physiology. Pain measurement instruments are rarely used, and nurses do not recognize them. The documentation of pain care is unsystematic and does not support the continuity of care. There is a clear need for development of assessment and documentation practices in the studied hospitals. Future research should look at the postoperative care of pain at home as well as care in non-university-affiliated hospitals.

Ethical Dilemmas in the Care of Patients with Incurable Cancer

This article aims to identify and describe the ethical dilemmas that are involved in the care of patients with incurable cancer. The data were collected in semistructured focused interviews with 32 patients, 13 nurses and 13 doctors from two central hospitals and four community health centres. The interviews were tape-recorded and transcribed verbatim. Interpretation was based on the method of content analysis. Ethical dilemmas occurred at the time of diagnosis, in connection with telling the truth, in providing information, in the treatment of pain, and in decision-making situations concerning active treatment. Dilemmas of active treatment concerned chemotherapy, intravenous infusions, blood transfusions and antibiotics. There were also problems in relationships between nursing staff and next of kin, as well as a lack of co-operation between nurses and doctors.