Developing a perinatal palliative care service package for women with fetal anomaly diagnosis: protocol for mixed methods study.

BACKGROUND: Diagnosis of perinatal anomalies is a stressful experience that can negatively affect mothers, families, health-care systems, and societies. Perinatal palliative care (PPC) is a new development in maternity services which focuses on emotional, spiritual, social, and symptom management and provides care for women and families with fetal anomaly diagnosis. Therefore, this study aimed to develop a service package for women with fetal anomaly diagnosis in socio-cultural context of Iran. METHODS: This research is an exploratory mixed methods study with the qualitative-quantitative sequencing design that consists of four sequential phases. In the first phase, following a qualitative approach, the researcher will explore the needs and experiences of women with fetal anomaly diagnosis, their families, health care providers and policy-makers. At the second phase, based on the review of the literature, Program, guideline, service package and protocol for care of women and their families after perinatal anomaly diagnosis will be identified in other countries. In the third phase, recommendations from qualitative phase and literature review will be combined, the initial protocol of the palliative care service package for perinatal anomaly diagnosis will be identified and prioritized. In the fourth phase, the opinion of experts about this service package will be collected by using RAND/UCLA Appropriateness Method technique and the applicability of the service package's recommendations in clinical settings will be determined. DISCUSSION: The results of this Mixed Methods study are expected response the needs and experiences of the women with perinatal anomaly diagnosis being met in the socio-cultural context of Iran and a service package for palliative care of these women developed.

Family interactions in childhood leukemia: an exploratory descriptive study.

BACKGROUND: A child's cancer not only affects the child in question, but also their family members and even closes relatives and friends. The nature of this disease is such that, while imposing a high level of care workload on the family, it also affects various family aspects including personal, familial, and social interactions and relationships, as well as family functioning. This study aims to describe family interactions in childhood leukemia. METHODS: This study was an exploratory descriptive study, conducted on 58 participants (40 family members and 18 members of the health team), with purposeful sampling and semi-structured interviews-63 personal interviews and four group interviews-in the research context of the Cancer Hospital in Isfahan, 2016-2017. Data analysis in this study was carried out with qualitative content analysis using the Graneheim method. RESULTS: In the data analysis, four main categories and 13 subcategories were revealed. The first category, changes in roles, included the subcategories of super caregiver mother, supportive super father, role shift, self and others' forgetfulness, and confusion in roles and tasks; the second category, changes in interpersonal relationships, included the subcategories of changes in spousal relationships, changes in parent-child relationships, and changes in relationships between children; the third category, changes in social interactions, included the subcategories of changes in relationships with relatives, changes in relationships with peers, changes in relationships with the therapy team, and changes in interaction with supportive social networks; and the fourth category, changes in relationship with God, included the subcategories of spiritual bond and spiritual illness. CONCLUSION: Regarding the findings of this study, it is expected that health system policymakers in the country, while striving to strengthen the positive aspect of changes in family relationships and interactions, will develop and execute operational, comprehensive, and society-based plans in order to eliminate the barriers and problems of relationships within the family, as well as in relation to the larger community, taking into consideration the family's cultural and social beliefs.

Evaluate the Effectiveness of a Group Psychoeducational Intervention in Reducing the Level of Cancer-Related Fatigue in Women Receiving Chemotherapy for Breast Cancer: A Randomized Controlled Trial.

Background: One of the most debilitating symptoms in breast cancer survivors is cancer-related fatigue (CRF). CRF weakens patients' physical, cognitive, and occupational functions. It is associated with poorer quality of life and may reduce recurrence-free and overall survival. This study aimed to evaluate the efficacy of a group psychoeducational intervention in improving CRF in breast cancer patients. Materials and Methods: Fifty breast cancer patients who suffered from CRF were randomly assigned to receive a group psychoeducational intervention or control group. This study was designed as an eight weeks clinical trial. The psychoeducational intervention mainly consisted of concentrative movement therapy and energy conservation strategies. Primary outcome measures were the changes in the Fatigue Visual Analogue scale, Cancer Fatigue scale, and Piper Fatigue scale at the study endpoint. Measure assessments were made on four occasions: at baseline, after the intervention, one week, and four weeks post intervention. Statistical analysis was performed using SPSS26. Results: The intervention improved CRF significantly (P < 0.001). All subscales of the Cancer Fatigue scale and the sensory, affective, and cognitive subscales of the Piper Fatigue scale showed statistically significant effects (P < 0.001) at all time points. However, the behavioral subscale of the Piper Fatigue scale was different only at the end of the study (P < 0.001). Conclusions: The group psychoeducational intervention improved CRF significantly. All the sensory, behavioral, physical, affective, and cognitive subscales improved. Accessible and confirmatory treatment can help patients to cope with fatigue in communities.

Knowledge of attitude toward experience and satisfaction with electroconvulsive therapy in a sample of Iranian patients.

Despite the wide consensus over the safety and efficacy of electroconvulsive therapy (ECT), it still faces negative publicity and unfavorable attitudes of patients and families. Little is known about how the experience with ECT affects the patients' and their families' attitude toward it. The aim of this study was to examine a sample of Iranian patients and their families regarding their experience with ECT and to compare their knowledge and attitude toward ECT before and after this experience and their satisfaction with it. We surveyed 22 patients with major depressive disorder about to undergo ECT and 1 family member of each patient for their knowledge and attitude toward ECT and then surveyed them again after the trial of ECT to compare those variables while assessing their experience and satisfaction with ECT. Patients were rated using the Hamilton Depression Rating Scale and Mini-Mental Status Examination before and after the treatment. We found that, before ECT, family members had a more favorable attitude toward ECT than patients, but after ECT, the patients' attitude changed more positively compared with their families. Both patients and their families had a poor knowledge of ECT before the ECT trial, but their total knowledge increased afterward, although not in the areas of indications and therapeutic effects. The majority of patients and their families found ECT to be beneficial and were satisfied with it. Satisfaction with ECT was independent of treatment outcome. There was a high rate of perceived coercion to consent to ECT. Attention should be paid toward educating patients and their families about the ECT process, indications, risks, safety, and effects as well as informing them about their freedom of choice and right to refuse.

Breaking bad news protocol for cancer disclosure: an Iranian version.

In Iran, as in many Asian and Middle Eastern countries, a significant proportion of cancer patients are never informed of their illness. One solution that has been proposed to tackle this challenge is to develop a localized protocol on cancer diagnosis disclosure based on the culture and values of community members, and train healthcare team members to deliver the bad news using this protocol. This article introduces a localized protocol for disclosure of bad news to cancer patients in Iran. This protocol consists of six steps, including assessment, planning, preparation, disclosure, support and conclusion. In the drafting of this protocol an attempt was made to meticulously consider the cultural features of the Iranian society. Although breaking bad news will never be easy, having an appropriate plan of action based on individual's attitudes, considerably helps health-care professionals, and provides more satisfaction in patients.

Adolescents' Experiences When Living With a Parent With Cancer: A Qualitative Study.

BACKGROUND: Cancer affects not only the patient but also their entire family, especially adolescents. Adolescents whose parents are ill may manifest their distress through changes in school performance, physical complaints of pain and discomfort, as well as changes in social and interpersonal relations. There has been very little research about the effects of cancer on adolescents in Iran. OBJECTIVES: The purpose of this qualitative study was to explore the Iranian adolescents' experiences when living with a parent with cancer. PATIENTS AND METHODS: In this research, the descriptive-explorative approach was used. There were a total of 27 participants. Purposeful sampling was used and data collection methods were semi-structured deep interviews. Constant comparative analysis was used to study the data. RESULTS: The findings of this study showed that the main experiences of these adolescents were categorized into seven themes: 1- psychological problems of adolescents; 2- supportive-educative needs; 3- cancer as a two edged sword in family relationships; 4- stages of confrontation with the parent's cancer; 5- effect of cancer on social dimensions; 6- affective and helpful supportive agents; 7- Need of support for education under special conditions. CONCLUSIONS: This research showed that Iranian adolescents had the same experiences as other adolescents in other countries in many aspects yet in some issues, such as religious strategy, they had strong religious beliefs that would help them cope with their parents' cancer. Also it was shown that we must plan a program in which education and support should be provided to enable adolescents to cope with this detrimental situation with minimal disruption.

Effects of supportive-educative program on quality of life of adolescents living with a parent with cancer.

BACKGROUND: Cancer has significant traumatic effects on the family members of the patients, particularly in Asia's tightly knitted families. Research evidence suggests a debilitating impact of cancer on the quality of life of the afflicted individuals, their spouses, and their families. Since a few studies have been carried out on the quality of life of adolescents living with parents diagnosed with cancer, especially in Iran, the research team decided to evaluate the quality of life of them and also investigate the effects of supportive-educative program on it. MATERIALS AND METHODS: The present quasi-experimental, one-group study had a pre-test-post-test design and was performed in Esfahan in 2014. The sample of this study consisted of 30 adolescents. The data gathering tool was the short form of quality of life questionnaire (SF-36). Data were analyzed by descriptive statistics and paired sample t-test. P-value of 0.05 was considered significant. RESULTS: The paired sample t-test showed that before and after presenting the program, there were significant statistical differences in some aspects of quality of life, such as physical functioning (P = 0.01), energy/fatigue (P < 0.0001), emotional well-being (P < 0.0001), social functioning (P = 0.001), pain (P < 0.0001), and general health (P = 0.01). CONCLUSIONS: This research showed that supportive-educative program can enhance some aspects of quality of life. Therefore, nurses and other health professionals can use this scheme or similar programs for helping adolescents living with a parent with cancer.

The process of confrontation with disability in patients with spinal cord injury.

BACKGROUND: Spinal injury can establish severe psychological outcomes for the patient and his/her family which requires high adjustment. Health system staff would be able to play their roles well in caring these patients provided with knowing what steps spinal injured people should pass to handle their disability and also what assistance they need in what stages from what sources. This study aimed to explain the process of confrontation with disability in spinal cord injured patients. METHODS: This was a qualitative study with grounded theory approach which was performed in Strauss and Corbin proposed method on twenty people with spinal cord injury who had past at least three months from their spinal injury. Sampling was done in purposive and theoretical method, and analysis of the results was also performed during constant comparative process. RESULTS: Central concept in the data was support which was associated with other concepts and affected them. The patients, with the help of internal and external support could overcome their main problem that was disability feeling and dependency on others and find a new definition for the self, and ultimately achieve the sense of independence and autonomy. CONCLUSIONS: Knowing the process of confrontation with disability along with better understanding of spinal cord injured people would help health system staff to actualize and support their potentials much better through strengthening internal resources and providing appropriate supportive services of each individual.