The Experience of Uncertainty in Mothers Caring for Children at Home after Palliative Heart Surgery.

Objectives: Palliative heart surgery is a compelling option for some children with congenital heart disease for which corrective heart surgery is not yet possible due to its complexity. As primary caregivers, mothers have the challenge of providing optimal care to their children at home post-surgery. This study aims to explore the experiences of mothers who are caring for children recovering from palliative heart surgery at home. The research applied descriptive, qualitative and phenomenology design. Material and Methods: This study was conducted in Jakarta. The participants were 15 mothers of palliative heart surgery patients from seven provinces in Indonesia; Jakarta, Aceh, Bali, North Sumatra, West Java, Central Java and Banten. Data were collected using semi-structured interviews through the WhatsApp video call application and analysed using the Colaizzi method. Results: Mothers often felt uncertain about how to provide the best care and felt that their needs for hospital services to assist them went unmet. Conclusions: This study has implications for the development of nursing services related to discharge planning for palliative heart surgery patients.

What is the prevalence of fear of cancer recurrence in cancer survivors and patients? A systematic review and individual participant data meta-analysis.

OBJECTIVE: Care for fear of cancer recurrence (FCR) is considered the most common unmet need among cancer survivors. Yet the prevalence of FCR and predisposing factors remain inconclusive. To support targeted care, we provide a comprehensive overview of the prevalence and severity of FCR among cancer survivors and patients, as measured using the short form of the validated Fear of Cancer Recurrence Inventory (FCRI-SF). We also report on associations between FCR and clinical and demographic characteristics. METHODS: This is a systematic review and individual participant data (IPD) meta-analysis on the prevalence of FCR. In the review, we included all studies that used the FCRI-SF with adult (≥18 years) cancer survivors and patients. Date of search: 7 February 2020. Risk of bias was assessed using the Joanna Briggs Institute critical appraisal tool. RESULTS: IPD were requested from 87 unique studies and provided for 46 studies comprising 11,226 participants from 13 countries. 9311 respondents were included for the main analyses. On the FCRI-SF (range 0-36), 58.8% of respondents scored ≥13, 45.1% scored ≥16 and 19.2% scored ≥22. FCR decreased with age and women reported more FCR than men. FCR was found across cancer types and continents and for all time periods since cancer diagnosis. CONCLUSIONS: FCR affects a considerable number of cancer survivors and patients. It is therefore important that healthcare providers discuss this issue with their patients and provide treatment when needed. Further research is needed to investigate how best to prevent and treat FCR and to identify other factors associated with FCR. The protocol was prospectively registered (PROSPERO CRD42020142185).

Effectiveness of psychoeducation intervention among women with gynecological cancer: a systematic review and meta-analysis of randomized controlled trials.

Psychoeducation interventions have been suggested to improve sexual functioning and quality of life. The aim of this study was to examine the effects of the psychoeducation intervention on quality of life, sexual function, and psychological outcomes; and to identify the critical components of psychoeducation intervention for women with gynecological cancer. This study was a systematic review and meta-analysis. Psychoeducation interventions were searched using six English databases, eligible studies were extracted, and the risk of bias was evaluated by two authors independently. A random effects model was used to examine the intervention effects. We conducted subgroup analysis and meta-regression to assess the variables underlying the heterogeneity. In total, eight trials were identified, and 1128 participants were included. Women who received the psychoeducation intervention had better quality of life (standardized mean difference (SMD) = 0.59, 95% confidence interval (CI): 0.22, 0.97), sexual functioning (SMD = 0.63, 95% CI: 0.27, 0.99), and psychological outcomes (i.e., anxiety and depression (SMD = - 0.27, 95% CI: - 0.09, - 0.44)). Interventions that combined lecture-based, skill practical, discussion, and counseling were conducted using an online format and were delivered by a team of health professionals that had higher scores of qualities of life. Additionally, involving significant others in the intervention improved sexual functioning. Psychoeducation interventions effectively improve quality of life, sexual functioning, anxiety, and depression. Incorporating lecture-based, practical skills, discussion, and counseling through an online format and involving significant others are beneficial for improving the quality of life and sexual functioning among women with gynecological cancer.

The relationships of unmet needs with quality of life and characteristics of Indonesian gynecologic cancer survivors.

Gynecologic cancer survivors' complex needs are too often overlooked. This study aimed to identify the associations between unmet needs and quality of life, and selected characteristics of Indonesian gynecologic cancer survivors. This study was a cross-sectional, correlation study. A total of 298 participants completed the Cancer Survivor Unmet Needs (CaSUN), EORTC QLQ-C30, and demographic and clinical-related questionnaires. A higher level of unmet needs was linked to lower perceived quality of life. Higher levels of unmet needs were associated with younger age, lower income, higher educational background, shorter time since diagnosis, more advanced cancer stage, and having combination therapies (p < 0.05). The most frequently reported unmet need of the Indonesian gynecologic cancer survivors was financial support (70.5%). The gynecologic cancer survivors who had completed primary treatment need continuous comprehensive cancer care to help them cope with the lingering or emerging problems related to cancer and its treatment.

Liens entre les besoins non satisfaits, la qualité de vie et les caractéristiques des survivantes de cancers gynécologiques en Indonésie.

Les survivantes de cancers gynécologiques ont des besoins complexes très souvent négligés. La présente étude indonésienne vise à établir les liens entre les besoins non satisfaits, la qualité de vie et certaines caractéristiques particulières de ces survivantes. Au total, 298 participantes ont rempli le questionnaire sur les besoins non satisfaits des survivants au cancer (Cancer Survivor Unmet Needs ou CaSUN), le questionnaire sur la qualité de vie EORTC QLQ-C30 ainsi que les questionnaires démographiques et cliniques. L'étude, réalisée suivant un devis corrélationnel transversal, a établi un lien entre les besoins non satisfaits et la dégradation de la qualité de vie perçue. Plusieurs facteurs sont associés à l'augmentation des besoins insatisfaits: patients jeunes, revenu moindre, niveau d'éducation moyen, diagnostic récent, stade avancé de la maladie, et polythérapie (p < .05). Chez les survivantes indonésiennes d'un cancer gynécologique, le soutien financier (70,5 %) constitue le besoin le plus souvent insatisfait. À la fin des traitements primaires, elles ont besoin de soins globaux et continus pour gérer les problèmes, nouveaux comme anciens, causés par le cancer et le traitement.

'Finally, I get to a climax': the experiences of sexual relationships after a psychosexual intervention for Indonesian cervical cancer survivors and the husbands.

Purpose: The purpose of this study was to describe the experiences of sexual relationship after a nurse-led psychosexual intervention for Indonesian cervical cancer survivors and their husbands.Design: A qualitative descriptive study was conducted.Participants and methods: Sixteen cervical cancer survivors and their husbands who had participated in the nurse-led psychosocial intervention were invited for semi-structured in-depth interviews. Data were analyzed using thematic analysis.Findings: Four themes were identified: (1) lessening suffering; (2) supporting each other to regain sexual life (2a) finding reasons to do or undo sexual intercourse, (2 b) "How can I bring back my wife's sexual desire?," (2c) "Finally, I get to a climax;" (3) getting more intimate and caring about each other, and (4) "Now I'm getting more confident." Cervical cancer survivors and their husbands experienced overall positive outcomes in their sexual and intimate relationship after a psychosexual intervention.Conclusions: The psychosexual intervention helped the survivors and their husbands adapt and manage sexual dysfunction following cancer treatment. Nurses and other healthcare professionals should initiate psychosexual care by assessing the concerns and needs of women diagnosed with cervical cancer, as an integral part of their care plan.

Gynecological cancer inpatients need more supportive nursing care than outpatients: a comparative study.

BACKGROUND: Gynecological cancer inpatients and outpatients may have distinct supportive nursing care needs. This study aimed to compare the supportive care needs between these two patient cohorts. METHODS: This cross-sectional comparison analytic study aimed to identify the differences between the supportive nursing care needs of the gynecological cancer inpatients and outpatients. Data were collected from 200 participants who were recruited through consecutive sampling method. RESULTS: The results showed that gynecological cancer inpatients needed more supportive nursing care than the outpatients. The most reported supportive nursing care needs of the inpatients were in the domains of physical (80%) and the psychological (84%). Whilst, the outpatients needed more health information support (78%). There was a significant difference between the supportive nursing care needs of gynecological cancer inpatients and outpatients (p value = 0.001). Supportive nursing care needs of the inpatients were 44 times higher compared to those of the outpatients. CONCLUSIONS: The gynecological cancer inpatients and outpatients need supportive nursing care differently. Therefore, nurses should assess supportive care needs of their patients early during the care in each setting so that the intervention could be tailored to the patient's individual needs. Our study findings can help nurses navigate the supportive care needs for gynecological cancer patients receiving inpatient and outpatient care.

Supportive care needs in predicting the quality of life among gynecological cancer patients.

Unmet supportive care needs have been shown to lower the quality of life of cancer patients, including those with gynecological cancer. Therefore, we examined how the unmet supportive care needs might predict the quality of life of gynecology cancer patients under-going therapy. We had a convenience sample of 153 patients from two major cancer hospitals in Jakarta, Indonesia, complete the SCNS-SF34 and EORTC QLQ-30. Analysis showed that unmet supportive care needs predict poorer quality of life (i.e., lower global health status and functional status, and more cancer-related symptoms). This study emphasizes the need for supportive care services in the areas of psychological, physical, and sexuality to be prioritized to improve the patients' quality of life.

Gender role conflicts experienced by Indonesian women with gynecological cancer: A phenomenological study.

Background: Gynecological cancer and its treatments can lead to sexual problems, potentially disrupting the gender role performance of women. Sexuality and gender roles are context-specific, yet these issues remain unexplored in the Indonesian context. Objective: This study aimed to explore the gender role conflicts experienced by Indonesian women having gynecological cancer. Method: A qualitative design with a phenomenology approach was utilized in this study. Data were collected through individualized, face-to-face, in-depth interviews conducted from 1 April to 30 December 2022 with 22 women diagnosed with gynecological cancer who had undergone treatments at the Dharmais Cancer Hospital, Jakarta, Indonesia. Data were analyzed using thematic analysis. Results: Three themes were developed: 1) challenges in fulfilling female gender roles after having cancer diagnosis and therapies, 2) emotional struggles related to gender role conflicts, and 3) efforts to cope with gender role conflicts. Conclusion: The study sheds light on how sexual complications due to gynecological cancer and its treatments extend beyond physical issues. A deeper layer of problems around sexual dysfunctions among gynecological cancer survivors is often rooted in traditional gender-role expectations. Nurses should have a comprehensive and contextual understanding of the unique experiences of women living with gynecological cancer to facilitate a positive adaptation to their cancer journey.

Physical sexual and intimate relationship concerns among Indonesian cervical cancer survivors: A phenomenological study.

Cervical cancer often leads to sexuality and intimacy concerns for the affected woman within a marital relationship.This study aimed to explore physical sexual concerns and their impact on the intimate partner relationships experienced by cervical cancer survivors. Using a descriptive phenomenological approach, data were collected through in-depth interviews with Indonesian women survivors of cervical cancer. Two themes and five sub-themes were constructed from the thematic analysis. The first theme was the physical sexual concerns following cervical cancer treatment, with the subthemes: red spotting and massive vaginal discharge after having sexual intercourse; narrower, smaller and less lubricated vagina; pain during sexual intercourse; feeling of shortened vagina as if it had been cut. The second theme of impact of sexual concerns on intimate partner had five subthemes of: looking for reasons to refuse sexual intercourse; prejudice towards the spouse; feeling forced to fulfil husband's sexual needs; accepting spouse's anger; willingness to let the spouse marry another woman. The findings provide nurses with a greater understanding on how women adapt to their altered sexuality and intimacy with their partner following cancer treatments.

Need Asseesment on Maternal Mental Health Care for Perinatal Mothers during COVID-19: A Qualitative Study.

Background: During COVID-19 pandemic, the isolation, socialization, and extreme changes in daily life have some potential mental health consequences which should be recognized as a critical public health concern, especially for perinatal mothers. Therefore, it is very important to assess the needs for maternal mental health care in perinatal mothers during COVID-19 pandemic. This study aimed to explore mothers' needs for maternal mental health care in the perinatal period during COVID-19 pandemic. Material and Methods: Realistic phenomenological approach was carried out in this qualitative study. The study was conducted at five community health centers in the city of Tangerang, Indonesia. In-depth interviews were conducted to 11 mothers who were pregnant, in labor, during puerperium and two months after giving birth with purposive sampling. Data were collected from May to August 2021. Interviews were conducted face to face, audio recorded, and transcribed verbatim. Data were analyzed by using Van Manen's phenomenological method. Result: Initial finding revealed 254 codes, which were then reduced to 122 codes, 98 sub-categories, 22 categories, and 5 themes. There were five themes related to mothers' needs for mental health care during COVID-19, i.e., health protocol during pandemic, psychological support, health education, simple coping mechanism, and support system. Conclusions: The needs can be fulfilled by the closest people the mothers have and healthcare system for perinatal mental health. Vaccination, health protocol, and psychological resilience should be delivered to mothers during COVID-19.

Preconception care knowledge and information delivery modes among adolescent girls and women: a scoping review.

PURPOSE: The aim of this study was to conduct a scoping review of knowledge and information delivery modes related to preconception care (PCC) among adolescent girls and women. METHODS: A scoping review was performed on studies selected from five electronic databases (Cochrane Library, PubMed, Science Direct, CINAHL/EBSCO, and ProQuest), published between 2012 and 2022, with predetermined keywords and criteria. We included English-language research articles available in full text and excluded irrelevant articles. RESULTS: This study included eight articles, comprising seven quantitative studies and one qualitative study conducted among adolescent girls and women. Five were from low- and middle-income countries and three were from high-income countries. The synthesized themes generated from the data were PCC knowledge and PCC information delivery modes and effectiveness. In general, adolescent girls and women were found to have basic PCC knowledge, including risk prevention and management and a healthy lifestyle, although more extensive knowledge was found in higher-income countries than in lower-income countries. The delivery modes of PCC information have grown from individual face-to-face conventional methods, which are used predominantly in lower-income countries, to more effective digital mass media. CONCLUSION: Globally, many women still have insufficient knowledge regarding PCC, as not all of them receive access to PCC information and support. PCC promotion efforts should be initiated earlier by involving a wider group of reproductive-age women and combining individual, in-group, face-to-face, and electronic delivery modes.

Embracing My Stoma: Psychosocial Adjustment of Indonesian Colorectal Cancer Survivors Living With a Stoma.

BACKGROUND: After surgical treatment of colorectal cancer (CRC), most survivors need to have an ostomy, which can lead to restrictions in their psychological and social functioning. How Indonesian CRC survivors adjust to living well with the stoma remains an understudied area. OBJECTIVE: This study aimed to explore the lived experiences of Indonesian CRC survivors living with a stoma regarding their psychosocial adjustment. METHODS: This study adopted Heidegger's interpretive phenomenology approach. Using semistructured in-depth interviews, data were collected until saturation from 11 CRC survivors. Data were analyzed using thematic analysis, with a Heideggerian stance. RESULTS: Three themes with corresponding subthemes were identified: (1) achieving self-reconciliation (subthemes: stoma as a savior, embracing the stoma's existence, being confident as an ostomate), (2) getting tremendous social support (subthemes: getting support from partner, family and community, and peer ostomates), and (3) making practical adjustments in daily life (subthemes: adjustment in clothing, food and drink, physical activities and exercise, religious activities, and traveling). These 3 themes describe the essence of the "lived psychosocial experiences of the CRC survivors with stoma." CONCLUSIONS: In contrast to previous study findings conducted primarily in Western countries, most of the Indonesian CRC survivors living with a stoma described positive psychosocial adjustment regarding their ostomy. In this work, social support and cultural-religious aspects made a significant contribution to this adjustment. IMPLICATIONS FOR PRACTICE: Healthcare professionals, especially nurses, can use this knowledge in providing psychosocial support for CRC survivors with ostomy to facilitate a smooth adaptation and adjustment journey.

MIESRA mHealth: Marital satisfaction during pregnancy.

The transition of a pregnant woman's role often causes emotional changes that have an impact on marital satisfaction. We develop MIESRA mHealth and evaluate its impact on satisfaction of husband-wife relationship during pregnancy. A quasi-experimental study was conducted on 82 couples of pregnant women and divided into control, single, and paired group. We implemented MIESRA mHealth for four weeks. In the couple group, the wife did mindfulness based on the information in the MIESRA mHealth together with her husband. In a single group, the wife sees the video as an initial guide to doing mindfulness. In the control group, respondents received programme interventions from hospitals which included education and consultation with obstetricians. Husband-wife relationship is evaluated using Compatibility of Husband-and-Wife Relationships / Kesesuaian Hubungan Suami Istri (KHSI) questionnaire and the generalised estimating equations (GEE) was used to analyse the data. The women's KHSI scores in the couple and single intervention groups (ß = -7.46, p = 0.002; ß = -9.11, p = 0.001) were better than the control group. The husbands' KHSI scores in the paired and individual intervention groups (ß = -7.04, p<0.001; ß = -3.74, p = 0.024) were better than the control group. Nursing interventions to build emotional bonds between parents and foetuses based on mHealth can be a promising intervention for marital harmony during the perinatal period. MIESRA m-Health is a promising intervention on marital satisfaction during pregnancy and can be implemented as a part of the antenatal care programme to increase marital satisfaction.

Psychological and sexual problems of cancer survivors.

OBJECTIVE: To explore: 1) the unmet needs of breast cancer patients; 2) the sexual needs experienced by breast cancer survivors; 3) the experiences of cancer patients at the time of relapse, including the biopsychosocial-spiritual aspects of their experiences. MATERIALS AND METHODS: Interpretative phenomenological qualitative research by conducting direct in-depth interviews with participants who met the inclusion criteria. Sample analyzed were breast cancer survivors who had experiences related to unmet needs (14 participants) or sexual problems (12 participants); adult cancer patients who experienced recurrences (10 participants). RESULTS: Themes identified for breast cancer patients with unmet needs were i) overcoming health problems in breast cancer survivors; ii) need to access the best health services; iii) women's unmet information needs concerning cancer treatment. For breast cancer survivors: i) information is needed to overcome sexual problems, ii) family support is needed to get sexual information, and iii) health care facilities need to provide sexual information. For patients experiencing recurrences: i) the reaction that occurs when receiving bad news; ii) efforts made during a relapse, iii) self-concept during a relapse. CONCLUSIONS: Health-related problems of breast cancer survivors, such as fatigue and fear of cancer recurrence, can lead them to have trouble with social relationships, question their spirituality, and struggle with sex and sexuality. Oncology nurses and other professionals need to be aware of the unmet needs of breast cancer survivors, especially in relation to resolving the sexuality issues of cancer survivors. Understanding of the experiences of patients with relapse of different types of cancer should be improved.

Growth and development of oncology nursing in Asia.

Oncology nursing is increasingly recognized around the world as being vitally important for an effective cancer control system. Granted, there is variation between and among countries/regions regarding the strength and nature of that recognition, but oncology nursing is clearly seen as a specialty practice and as a priority for development in cancer control plans, especially for high resource countries/regions. Many countries/regions are beginning to recognize that nurses are vitally important to their cancer control efforts and nurses require specialized education and infrastructure support to make a substantial contribution. The purpose of this paper is to highlight the growth and development of cancer nursing in Asia. Several brief summaries are presented by nurse leaders in cancer care from several Asian countries/regions. Their descriptions reflect illustrations of the leadership nurses are providing in cancer control practice, education, and research in their respective countries/regions. The illustrations also reflect the potential for future development and growth of oncology nursing as a specialty given the many challenges nurses face across Asia. The development of relevant education programs following basic nursing preparation, the establishment of specialty organizations for oncology nurses, and engagement by nurses in policy activity have been influential factors in the growth of oncology nursing in Asia.

[Sexual and social adjustments of indonesian male partners of gynecological cancer survivor]. / Adaptaciones sexuales y sociales de las parejas masculinas indonesias de supervivientes de cáncer ginecológico.

OBJECTIVE: This study explores the sexual and social adjustments of the partners of gynecological cancer survivors in Indonesia. METHOD: Phenomenological research interviewed seven male participants whose spouses sought gynecological cancer treatment at the Army Hospital in Jakarta from July to August 2020. The collected data were transcribed and thematically analyzed. RESULTS: The male partners described their loss of sexual desire and intimacy. They indicated a constructed sexual and social adjustments, including having sexual distractions, alternative sexual activities, and performing extended roles in the family after their partner's diagnosis and treatment. CONCLUSIONS: These research findings suggest that oncology and family nursing interventions should mitigate the gynecological cancer survivors and partners' sexual and social distress to enhance the couple's relationship and well-being after a gynecological cancer diagnosis.

The socio-demographic factors correlated with financial toxicity among patients with breast cancer in Indonesia.

BACKGROUND: Breast cancer is one of the major cancer types found among Indonesian women. This cancer diagnosis and its treatment causes perpetual financial burden for the women and their family. This study aims to identify the correlation between socio-demographics with financial toxicity among women with breast cancer in Indonesia. DESIGN AND METHODS: This study design was cross-sectional with 109 respondents of Indonesian breast cancer survivors who were recruited using consecutive sampling. Quantitative data were collected with a demographic and a Comprehensive Score for Financial Toxicity (COST) questionnaires, then analyzed using Chi-Square test and linear regression method. RESULTS: The majority of the women were 18 to 55-years-old (75.2%), married (91.7%), employed (80.7%), and having moderate income (58.7%). Logistic regression analysis indicates that survivor's family as a primary wage earner (p=0.042), low-high income (p=0.043), and dependents number (p=0.012) are significantly associated with financial toxicity. CONCLUSIONS: The financial toxicity among women with breast cancer was mainly correlated with the number of survivor's dependent and the household income. This study encourage related parties to establish socio-economic safety net for women with breast cancer, including their families.

Deficient Health Care Services as Barriers to Meet Care Needs of Gynecological Cancer Survivors in Indonesia: A Qualitative Inquiry.

OBJECTIVES: This study aimed to gain insight into the unmet care needs and health care service barriers experienced by Indonesian gynecological cancer survivors after cancer therapy. DATA SOURCES: Twenty purposively selected women who had completed gynecological cancer therapy for at least 1 year participated in a descriptive qualitative study. Data were collected through in-depth interviews and thematically analyzed. CONCLUSION: The analysis constructed two themes and seven subthemes: (a) unmet care needs (subthemes: late side effects; cancer recurrence; stigma of cancer transmission; social-economic concerns), (b) deficient functions of health care services (subthemes: short consultation time; unempathetic health professionals; and inefficient time and cost for the health care services). The gynecological cancer survivors experienced shortages of informational, psychological, and socioeconomic support after cancer therapy because of the deficient quality of the health care services. IMPLICATION FOR NURSING PRACTICE: Nursing interventions could mitigate the unmet care needs of gynecological cancer survivors after cancer therapy through patient-centered care services and multidisciplinary collaboration.