Carina Berterö

Patient and Parent Views on a Web 2.0 Diabetes Portal—the Management Tool, the Generator, and the Gatekeeper: Qualitative Study

Background The Internet has undergone rapid development, with significant impact on social life and on modes of communication. Modern management of type 1 diabetes requires that patients have access to continuous support and learning opportunities. Although Web 2.0 resources can provide this support, few pediatric clinics offer it as part of routine diabetes care. Objective We aimed to explore patients’ and parents’ attitudes toward a local Web 2.0 portal tailored to young patients with type 1 diabetes and their parents, with social networking tools such as message boards and blogs, locally produced self-care and treatment information, and interactive pedagogic devices. Opportunities and obstacles to the implementation of Web 2.0 applications in clinical practice were sought. Methods Participants were 16 mothers, 3 fathers, and 5 young patients (ages 11-18 years; median 14 years) who each wrote an essay on their experience using the portal, irrespective of frequency and/or their success in using it. Two main guiding questions were asked. A qualitative content analysis was conducted of the essays as a whole. Results Three main categories of portal users’ attitudes were found; we named them “the management tool,” “the generator,” and “the gatekeeper.” One category was related to the management tool functionality of the portal, and a wide range of concrete examples was found regarding useful facts and updates. Being enabled to search when necessary and find reliable information provided by local clinicians was regarded as a great advantage, facilitating a feeling of security and being in control. Finding answers to difficult-to-ask questions, questions portal users did not know they had before, and questions focusing on sensitive areas such as anxiety and fear, was also an important feature. A second category was related to the generator function in that visiting the portal could generate more information than expected, which could lead to increased use. Active message boards and chat rooms were found to have great value for enhancing mediation of third party peer-to-peer information. A certain level of active users from peer families and visible signs of their activity were considered necessary to attract returning users. A third category was related to the gatekeeper function of the password requirement, which created various access problems. This and other unsuccessful experiences caused users to drop the portal. A largely open portal was suggested to enhance use by those associated with the child with diabetes, such as school personnel, relatives, friends and others, and also by young users somewhat unwilling to self-identify with the disease. Conclusions Web 2.0 services have great potential for supporting parents and patients with type 1 diabetes by enhancing their information retrieval and disease management. Well-developed services, such as this one, may generate continued use and should, therefore, be carefully maintained and updated by health care professionals who are alert and active on the site with new information and updates. Login procedures should be simple and minimized as much as possible. The education of clinical practitioners regarding the use of Web 2.0 resources needs more attention.

Breast cancer diagnosis and its treatment affecting the self: a meta-synthesis.

There has been a great deal of qualitative research conducted that has examined the impact of breast cancer on the Self, however, there has been little effort to analyze these findings from a meta-perspective. This study sought to fill this gap by conducting a meta-synthesis of the qualitative research on breast cancer and its treatments affecting the Self. Meta-method and meta-synthesis techniques were used to integrate findings across 30 qualitative research reports conducted between 1990 and 2003 with a total of 795 women, from several different countries. The fusions identified from this meta-synthesis revealed 4 aspects of the Self affected by the diagnosis of breast cancer and its treatment: awareness of their own mortality, living with an uncertain certainty, attachment validation, and redefinition of Self. These findings were validated through use of a comparison study. The women adapt to being a breast cancer patient; redefining their lives and their self. This study highlights the existential process that women of many cultures move through as they incorporate the meaning of breast cancer into their lives. Nurses who are aware of these processes are better able to link women with resources to help them in their adaptation to living with breast cancer.

Why do young women continue to have sexual intercourse despite pain

PURPOSE Many young women suffer from pain and discomfort during sexual intercourse, and an increasing number of them seek help for their problems. It seems that some young women continue to have sexual intercourse despite pain. However, their motives are unclear. METHODS A total of 16 women, aged 14 to 20 years, with variable degrees of coital pain were selected at a youth center in a city in southeastern Sweden, to explore why they continued to have sexual intercourse despite pain. The women participated in audiotaped qualitative individual interviews, which were analyzed using the constant comparative method from grounded theory. RESULTS During the analysis we identified the core category striving to be affirmed in their image of an ideal woman and the categories resignation, sacrifice, and feeling guilt. The perceived ideal women had several distinct characteristics, such as willingness to have sexual intercourse, being perceptive of their partners sexual needs, and being able to satisfy their partners. Having sexual intercourse per se was considered to be an affirmation of being a normal woman, irrespective of pain or discomfort. CONCLUSIONS These young womens focus on a constructed ideal explains why they continue to have sexual intercourse despite pain. Greater awareness of these beliefs among gynecologists, sexologists, and other healthcare professionals involved in the management of young women with coital pain would be beneficial.

GUILT AND EMPTINESS: WOMEN'S EXPERIENCES OF MISCARRIAGE

Women who lose an early pregnancy are shocked when they are first given the information that they have miscarried. Later they feel guilt and emptiness. Heideggerian interpretive phenomenology has been used with 13 women from southwest Sweden to uncover their lived experience of miscarriage. Women plan their future with a child during early pregnancy. When miscarriage occurs it is not a gore, an embryo, or a fetus they lose, it is their child. They feel that they are the cause of the miscarriage through something they have done, eaten, or thought. They feel abandonment and they grieve for their profound loss; they are actually in bereavement.

Receiving a diagnosis of inoperable lung cancer: patients' perspectives of how it affects their life situation and quality of life.

Lung cancer is a disease with many biomedical and psychological symptoms. The diagnosis and treatment of lung cancer induces adverse effects. Having an inoperable lung cancer there are few possibilities of being cured. Management of patients with inoperable disease is directed at relieving local or systemic symptoms. The purpose of this study is to describe how it affects the patients’ life situation and quality of life. Data was collected by qualitative interviews where the patients lived experiences were articulated. Twenty-three Swedish patients diagnosed and starting palliative treatment for inoperable lung cancer were interviewed. The interviews were audio-taped and transcribed verbatim. Data were interpreted trough interpretive phenomenology. Six themes were identified that were important for the informants’ experience of their life situation and quality of life. The themes were: Experience of uncertainty; including time of waiting and thoughts, experience of hope; about a prolonged life, network as support; being treated as the person they are thoughts of death; is there time to conclude their lives?, feelings of shame and guilt; they have caused the disease by themselves and next of kin reactions; sadness, guilt, worries and anger. These six themes gave a structure presenting the essence: Living as usual. Maintaining independency and integrity were important, as well as maintaining status, being treated as the person they always had been and that they experience that they had a meaning to fulfill in life. They were living as usual. The findings of this study point out the importance of improving the care of people afflicted with lung cancer, as well as promoting support for the next of kin, since they are significantly important for these patients’ experiences of quality of life. This knowledge and understanding will be useful for development of interventions and guidelines for treatment.

Nullified: Women's perceptions of being abused in health care

Objective. In a study performed with The NorVold Abuse Questionnaire (NorAQ) among Nordic gynecological patients, the prevalence of lifetime abuse in health care (AHC) was 13 – 28%. In the present study we chose a qualitative approach. Our aim was to develop a more in-depth understanding of AHC; as experienced by female Swedish patients. Study design. Qualitative interviews with 10 Swedish gynecological patients who had experienced AHC. The interviews were analyzed through Grounded Theory. Results. Saturation was reached after six interviews. In the analyses four categories emerged which explain what AHC meant to the participating women: felt powerless, felt ignored, experienced carelessness, and experienced non-empathy. To be nullified is the core category that theoretically binds the four categories together. The womens narratives described intensive current suffering even though the abusive event had taken place several years ago. Conclusions. The fact that AHC exists is a critical dilemma for an institution that has the societys commission to cure and/or to alleviate pain and suffering. In their narratives, women described the experience of ‘being nullified’, a core category that embodies AHC.

District nurses’ perceptions of palliative care in the home:

Palliative care describes a caring philosophy. Originally, palliative care referred exclusively to the care of dying cancer patients, but over time has expanded to include mitigating care of all dying people whatever the diagnosis. The purpose of this paper is to explore the meaning of palliative care according to the experience of district nurses in Sweden. Six district nurses were interviewed, and the transcripts were analyzed using Giorgi’s phenomenology. The essence of the caring philosophy for the nurses in the study was identified as commitment, underscored by four themes: challenge, control, frustration, and relationships. These findings indicate that district nurses must be offered resources and education in order to be able to fulfill their commitment, i.e., to supply good palliative care.

Effect of a structured follow-up visit to a midwife on women with early miscarriage: a randomized study

Background. Womens grief after miscarriage is substantial and important. Women who experience early miscarriage do not constitute a homogenous group. The aim of this study is to measure whether a structured follow‐up visit to a midwife (group 1) at 21–28 days after early miscarriage could reduce the womens grief, measured using the perinatal grief scale Swedish short version (PGS) after a further 3 months (i.e. 4 months after the miscarriage), compared to a regular follow‐up visit to a midwife (group 2). Methods. We performed an open randomized study of women who experienced early miscarriage (n = 88). The midwifes attitude in group 1 came from Swanson science theory of midwifery. In group 2, the women were offered only the ordinary type of consultation at a regular visit. A questionnaire with the PGS was used in both groups. Four months after the miscarriage, a second questionnaire with the same perinatal grief scale was sent by post. Results. There was a 30% greater reduction in grief in group 1 than that in group 2, when comparing the first and second measurements (not significant). The biggest differences were in the subscales active grief and difficulty in coping. Women with the subdiagnosis missed abortions had, as a group, significantly higher PGS scores at both visits, especially in active grief and difficulty in coping, regardless of the type of follow‐up visit. Conclusions. A structured follow‐up visit did not, in comparison with a regular follow‐up visit, imply any significant reduction in grief as measured using the PGS scale. However, the subgroup missed abortion had more extensive grief than the other women with miscarriage. Structured follow‐up visits are not imperative for all women with early miscarriage.

Longitudinal study of patients after myocardial infarction: Sense of coherence, quality of life, and symptoms

BACKGROUND Myocardial infarction has pronounced effects on an individual that demand changes in lifestyle. Health is influenced by whether the individual experiences the world as comprehensible, meaningful, and manageable, that is, has a sense of coherence (SOC). High SOC scores indicate that the individual probably manages the situation by understanding the context and connections: action and effect. OBJECTIVE The study objective was to identify the SOC, assess the quality of life (Short Form-12 Health Survey Questionnaire), assess the symptoms using the Seattle Angina Questionnaire, and create health curves from a baseline for patients with a first myocardial infarction. METHODS A longitudinal and predictive study of 100 participants in the heart care unit of a county hospital in southern Sweden was performed. RESULTS Women score lower on SOC than men. Persons with high SOC scores have fewer angina attacks, are more physically active, drink more alcohol, are more satisfied with their treatments, and have better disease perception. CONCLUSION By following SOC scores, a trend emerges that suggests it may be a useful tool for identifying those who will need extra support.

Living with breast cancer : Its effect on the life situation and the close relationship of women in Brazil

The diagnosis and treatment of breast cancer induces adverse effects. In this interpretive phenomenological study, 11 Brazilian women diagnosed and treated for breast cancer were interviewed. Data included audiotaped interviews where the womens lived experiences were articulated. Data were interpreted through Heideggers existential phenomenology. Themes that were found were interrelated and presented the essential structure of the essence the women were living-living side by side with the phantom of death. The 4 themes that were interpreted and identified were as follows: gaining a positive attitude for life, wanting to be recognized as a woman with certain needs, considering body image/self-image, and making efforts to hide. The findings of the study point out the importance of the fact that illness elicits more than fitting the body into traditional community expectations or surrendering the body to professional medicine. Even with all the deep changes in their lives and changed life priorities, the women want to carry on and live the best life they could. To put this idea in the front line makes the difference for the transition of these women.