Maria E. Carlsson

Cancer patients seeking information from sources outside the health care system.

Abstract Most of the information patients receive about cancer and its treatment is probably provided by staff in health care, but if patients do not get sufficient information there is a risk that they might rely on nonmedical sources to satisfy their need. The aim of this study was to survey the degree to which patients seek information from sources outside the health care system. All adult cancer patients visiting or being admitted to the Oncology Department on 1 day were asked to complete a questionnaire. In the course of that day, 192 adult patients visited the Oncology Department, and the response rate was 74%. The patients had used an active information-seeking strategy, i.e., had sought information from the following sources, only to a limited degree: the Internet (6%) medical books (37%), narratives (32%) and telephone helplines (10%). A more passive information-seeking strategy was more common; the patients obtained information from television and radio (82%), newspapers (86%), other patients (46%) and friends (55%). There was a significant correlation between educational level and information-seeking from the Internet, medical books and telephone helplines. Persons with a higher level of formal education had used these sources more than people with less education (P<0.05). Younger patients (<60 years) and those with a higher level of formal education had greater access to the Internet (P<0.0001) and read about cancer in the papers to a greater degree than older ones (P<0.05). Younger patients (P<0.05) and women (P<0.01) had used narratives to a greater degree than older patients and men. The main finding of this study was that the patients actively sought information about cancer only to a limited degree, but the majority of patients take an interest when cancer issues are presented in newspapers and magazines, or on radio and television.

Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment

Background: Cancer patients’ interpretations of the meaning of words used when given bad news are not well studied in medical settings. The aim of this study was to ascertain what significance verbal expressions had for cancer patients when they were given information about ending active tumour treatment, and what message they felt they received. Methods: Tape-recorded semi-structured interviews were performed and analysed using a qualitative phenomenographical approach. Results: Thirty patients with incurable cancer admitted to hospital-based home care unit in Sweden participated. Three main categories about the significance of words emerged: 1) words could indicate indirect warnings as being forewarnings, evasive or ambiguous; 2) words could also be perceived as emotionally trying, as threats or abandoning; 3) other words were fortifying and strengthened the patient in this situation. The overall message given during the information could be interpreted differently: either focused on treatment, on quality of life, or on threat and death. Conclusion: The understanding of the significance of words to tailor the information to patients helps the physician to use forewarnings and fortifying words and to identify and avoid the use of threatening words.

Advanced Palliative Home Care: Next-of-Kin's Perspective

GOALS (1). To describe what aspects are important when next-of-kin evaluate advanced palliative home care (APHC) and (2). to compare the expressed aspects and describe eventual differences among the three settings, which differed in terms of length of services, geographic location, and population size. SUBJECTS AND METHODS Four to 7 months after the patients death (87% from cancer), 217 consecutive next-of-kin from three different settings in Sweden responded (response rate 86%) to three open-ended questions via a postal questionnaire. Qualitative content analysis was performed. MAIN RESULTS Service aspects and comfort emerged as main categories. The staffs competence, attitude and communication, accessibility, and spectrum of services were valued service aspects. Comfort, such as feeling secure, was another important aspect and it concerned the next-of-kin themselves, the patients, and the families. Additionally, comfort was related to interactional issues such as being in the center and sharing caring with the staff. The actual place of care (i.e., being at home) added to the perceived comfort. Of the respondents, 87% described positive aspects of APHC and 28% negative aspects. No major differences were found among the different settings. CONCLUSIONS Next-of-kin incorporate service aspects and aspects relating to the patients and familys comfort when evaluating APHC. The importance of these aspects is discussed in relation to the content of palliative care and potential goals.

Educational Support Programme for Gynaecological Cancer Patients and Their Families

In order to improve psychosocial support for gynaecological cancer patients and their families a project with educational and supportive group programmes was started. This article presents an evaluation of the project. The study group consisted of those patients and next-of-kin who wished to participate in the educational support group programmes (n = 36 + 8). Patients from distant parts of the catchment area who were not able to participate constituted the controls (n = 25). A graded Likert-like questionnaire and a short profile of mood state (POMS) were completed before and after intervention. Patients who actively chose to participate differed from the unselected control group even prior to educational intervention. In certain issues their perceived knowledge about cancer was inferior to that of the controls and they felt more confused and angry than the control group (p < = 0.05). After intervention, the patients in the interventional group reported a significantly improved level of knowledge about cancer than the controls (p < 0.001, group by time interaction). The qualitative section of the evaluation revealed that the most positive experiences coupled with participation were the information and knowledge received and the mutual understanding experienced together with the other group members.

Educational group support for patients with gynaecological cancer and their families

Prior to the start of a psychosocial project for patients with gynaecological cancer and their families, a questionnaire was mailed to evaluate their potential interest in an educational and supportive group. Another aim was to rank the most important issues. Group I consisted of patients with a newly diagnosed cancer and group II comprised patients who had been in clinical remission for 2–5 years; 173 questionnaires were sent. The response rate was 80%. The rates of interest in the proposed group sessions were 63% and 65% from patients and relatives in group I, and 52% and 36% from those in group II (P < 0.05). Younger individuals, couples and people with a higher formal education were generally more interested in participating (P<0.05). The highest-ranked issues (mean 3.9–3.7 on a four-point scale) were cancer and cancer treatment, living with a cancer diagnosis, side-effects of treatment, cancer pain and psychological reactions to cancer. Among patients in group I, the interest in questions related to sexual activity was moderate (mean 2.8); the corresponding figure was significantly higher in group II (P<0.05). Interest in supportive and educational groups was significantly higher than in comparable studies. Since relaxation programmes and issues concerning problems with relationships have been generally regarded as the most crucial topics in supportive programmes, the preference for specifically cancer-related issues was surprising. The study underlines the importance of specifically ascertaining which issues an intended group considers to be important.Prior to the start of a psychosocial project for patients with gynaecological cancer and their families, a questionnaire was mailed to evaluate their potential interest in an educational and supportive group. Another aim was to rank the most important issues. Group I consisted of patients with a newly diagnosed cancer and group II comprised patients who had been in clinical remission for 2–5 years; 173 questionnaires were sent. The response rate was 80%. The rates of interest in the proposed group sessions were 63% and 65% from patients and relatives in group I, and 52% and 36% from those in group II (P < 0.05). Younger individuals, couples and people with a higher formal education were generally more interested in participating (P<0.05). The highest-ranked issues (mean 3.9–3.7 on a four-point scale) were cancer and cancer treatment, living with a cancer diagnosis, side-effects of treatment, cancer pain and psychological reactions to cancer. Among patients in group I, the interest in questions related to sexual activity was moderate (mean 2.8); the corresponding figure was significantly higher in group II (P<0.05). Interest in supportive and educational groups was significantly higher than in comparable studies. Since relaxation programmes and issues concerning problems with relationships have been generally regarded as the most crucial topics in supportive programmes, the preference for specifically cancer-related issues was surprising. The study underlines the importance of specifically ascertaining which issues an intended group considers to be important.

Cancer patients seeking information from sources outside the health care system : change over a decade

Cancer patients seeking information from sources outside the health care system : change over a decade

Bereaved spouses' adjustment after the patients' death in palliative care

OBJECTIVES To improve the support to bereaved spouses during the year after the patients death, a project was started consisting of three visits by a nurse (after 1, 3, and 13 months) with conversations about the patients death and the spouses life situation. The aim of this study was to describe the bereaved spouses situation and adaptation during the first year after the loss. METHODS Spouses of patients cared for by The Advanced Home Care Team (APHCT) in Uppsala, Sweden, were invited to participate in the project. Each participant was encouraged to talk freely about his or her situation, but enough direction was given to ensure that all items listed on a standardized questionnaire were covered. RESULTS Fifty-one spouses met the inclusion criteria and were invited to participate and 45 accepted. The subjects felt quite healthy but were tired and suffered from sleep disturbance. The grief reactions had initially been high but showed a significant decline from 1 to 13 months (p < .01). Forty-nine percent had experienced postbereavement hallucinations. SIGNIFICANCE OF RESULTS This study showed that the bereaved spouses felt quite healthy and adjusted quite well to their new life situation, after the patients death in a palliative care setting. The grief reactions had initially been high but showed a significant decline during the year.

Support group programme for relatives of terminally ill cancer patients

GoalsIn order to improve the support for family of terminally ill patients who cared for a dying relative at home, a project with a group programme was started. This article is an evaluation of the programme. The aims of this study were to describe the opinions of participants in a support group programme about the programme and how they felt they had benefited from it.Patients and methodsAll subjects (n=39) who completed the programme answered five open-ended questions, and 12 of them were interviewed in semi-structured interviews that were analysed using the phenomenographic method.ResultsThree main categories were identified in the interviews: (1) Practical condition and external circumstance—which condition had to be met for participation in the programme. (2) Group effects—the subjects felt that the programme was helpful in several respects, they perceived the programme being an important complement to the palliative home care, they benefited from mutual experiences shared among group members, the programme was also beneficial to the patients and was perceived to have had a health-promoting effect on the relatives. (3) The disease—the issue of how much the patients’ disease affecting the relative’s situation were raised in the groups.ConclusionThe results showed the value of the programme for relatives of terminally ill patients nursed in their home. The subjects emphasised the importance of the opportunity to meet people who are in a similar situation.

U-CARE: Internet-based stepped care with interactive support and cognitive behavioral therapy for reduction of anxiety and depressive symptoms in cancer - a clinical trial protocol

BackgroundApproximately 20–30% of patients with cancer experience a clinically relevant level of emotional distress in response to disease and treatment. This in itself is alarming but it is even more problematic because it is often difficult for physicians and nurses to identify cancer patients who experience clinically relevant levels of anxiety and depression symptoms. This can result in persistent distress and can cause human suffering as well as costs for individuals and to the community.MethodsApplying a multi-disciplinary and design-oriented approach aimed at attaining new evidence-based knowledge in basic and applied psychosocial oncology, this protocol will evaluate an intervention to be implemented in clinical practice to reduce cancer patient anxiety and depression. A prospective randomized design will be used.The overarching goal of the intervention is to promote psychosocial health among patients suffering from cancer by means of self-help programmes delivered via an Internet platform. Another goal is to reduce costs for individuals and society, caused by emotional distress in response to cancer.Following screening to detect levels of patient distress, patients will be randomized to standard care or a stepped care intervention. For patients randomized to the intervention, step 1 will consist of self-help material, a chat forum where participants will be able to communicate with each other, and a Frequently Asked Questions (FAQ) section where they can ask questions and get answers from an expert. Patients in the intervention group who still report symptoms of anxiety or depression after access to step 1 will be offered step 2, which will consist of cognitive behavioral therapy (CBT) administered by a personal therapist. The primary end point of the study is patients’ levels of anxiety and depression, evaluated longitudinally during and after the intervention.DiscussionThere is a lack of controlled studies of the psychological and behavioral processes involved in this type of intervention for anxiety and depressive disorders. Since anxiety and depressive symptoms are relatively common in patients with cancer and the availability of adequate support efforts is limited, there is a need to develop evidence-based stepped care for patients with cancer, to be delivered via the Internet.Trial registrationClinicalTrials.gov Identifier: NCT01630681