Open Access
Determinants of quality of life decrease in family caregivers of care-dependent patients: a longitudinal study
(Springer, 2024-10-19) Tavares, Marcus Luciano de Oliveira; Pimenta, Adriano Marçal; García Vivar, Cristina; Beinner, Mark Anthony; Montenegro, Lívia Cozer; Ciencias de la Salud; Osasun Zientziak; Institute of Smart Cities - ISC; Universidad Pública de Navarra / Nafarroako Unibertsitate Publikoa
Purpose Family caregivers of care-dependent patients experience a decline in their Quality of Life (QoL). However, the determinants contributing to this decrease in QoL are still not fully understood. Therefore, this study aimed to estimate prospectively the determinants contributing to decreased QoL among family caregivers of care-dependent patients. Methods This longitudinal study involved 135 family caregivers in Brazil. Data were collected at baseline from October 2016 to August 2017, and at follow-up from December 2021 to July 2022. During both periods, we administered a questionnaire that covered sociodemographic, health, and lifestyle characteristics of the participants; the Barthel Index to assess the dependency level of the patients; and the WHOQOL-bref to assess the caregivers¿ QoL. Results Both caregivers and care-dependent patients were more frequently elderly (44.4% versus 74.6%), female (79.3% versus 61.5%), and had non-communicable disease (60.0% versus 94.3%) at baseline. Most patients experienced a worsening in their level of dependency (59.8%), while over a third of family caregivers (34.8%) reported a decline in their General Quality of Life Index. Eight determinants of decreased QoL were identified: four protective factors (religious faith, physical activity, sharing caregiving responsibilities, and sufficient sleep) and four risk factors (patient hospitalization in the past year, patient increased care dependency, older family caregiver age, and longer caregiving duration). Conclusion Many factors influencing caregiver QoL are modifiable through intervention, underscoring the need for public policies to support family caregivers. Healthcare professionals can play a vital role in promoting protective factors and addressing risk factors to enhance caregiver QoL.
Embargo
Quality of life of adolescents and young adult survivors of childhood cancer: a qualitative study
(Wiley, 2024-11-11) Neris, Rhyquelle Rhibna; Papathanassoglou, Elizabeth; Leite, Ana Carolina Andrade Biaggi; García Vivar, Cristina; Nascimento, Lucila; Ciencias de la Salud; Osasun Zientziak; Institute of Smart Cities - ISC
Aims: to analyse how adolescents and young adults who survived childhood cancer experience their quality of life and to ex-plore their meanings and conceptualisations of quality of life. Design: narrative design following Squire's method. Methods: in-person and virtual recruitment, due to the global COVID-19 pandemic, was carried out in Brazil between May and November 2021. Eighteen semi-structured virtual interviews were conducted with childhood cancer survivors. These data wereanalysed using reflexive thematic analysis and employing a triangulation of investigators. Results: four subthemes were identified, encompassing participants' perceptions and meanings of quality of life. Through thereflection and synthesis of these subthemes, a central theme emerged entitled "New self", capturing the profound impact of thecancer and survival experience on every aspect of the self, along with participants' sense of having gained "a new life" and a "sec-ond chance". Conclusion: the study provides a rich and nuanced understanding of quality of life for childhood cancer survivors. The results highlight that after all the changes in life due to cancer, integrating the new self becomes a central aspect of quality of life forsurvivors. Implications for the Profession and/or Patient Care: recognising the profound shifts in self-perception that survivors of childhood cancer undergo, nurses should engage early in empowering patients and families, offering education, space and sup-port to help adolescents and young adults grow throughout their journey. Impact: the richness and depth inherent in qualitative data on quality of life can inform the development of care standards and health policies for survivors, guide the allocation of strategic resources and shape the development of plans and interventions focusing on childhood cancer survivors. Reporting method: the COREQ checklist was used. Patient or Public: no patient or public contribution.
Embargo
Strategies to individualize nutritional care of breast cancer survivors
(Elsevier, 2024-12-18) Rodriguez-Matesanz, Irati; Schober, Nathan; García Vivar, Cristina; Ciencias de la Salud; Osasun Zientziak
Introduction: breast cancer survivorship is a complex, chronic condition requiring personalized interventions. While nutrition is widely recognized as a key component of Survivorship Care Plans, there is limited implementation of nutritional interventions in routine survivorship care. This discussion paper explores strategies to individualize nutritional care for breast cancer survivors, identifies barriers to implementation, and proposes actionable solutions to improve adherence. Methods: a comparative and analytical approach, drawing on peer-reviewed articles in key databases, policy reports, case studies, and international guidelines, was used to examine nutritional care and barriers to implementing survivorship care plans for breast cancer survivors. Results: barriers to nutritional care stem from healthcare systems, including provider knowledge gaps, time constraints, and financial limitations. Patient-related factors include lack of awareness, fatigue, psychological barriers, perceived time barriers and inconsistent family support. Discussion: recommendations for overcoming these challenges include enhanced healthcare provider training, integration of registered dietitians into care teams, and promoting remote nutritional interventions to improve accessibility. Additionally, involving family members in dietary interventions may improve long-term adherence. Conclusion: by addressing these barriers through a coordinated multidisciplinary approach, nutritional interventions can improve the quality of life and long-term outcomes for breast cancer survivors, reducing the risk of recurrence, comorbidities, and improving their quality of life.
Open Access
Differences in quality of life and emotional well-being in breast, colon, and lung cancer patients during outpatient adjuvant chemotherapy: a longitudinal study
(Wolters Kluwer, 2022) Ulibarri Ochoa, Ainhoa; Ruiz de Alegría, Begoña; López Vivanco, Guillermo; García Vivar, Cristina; Iraurgi, Ioseba; Ciencias de la Salud; Osasun Zientziak
Adjuvant chemotherapy used at each cancer site may affect quality of life (QoL) and emotional well-being (affect) of cancer patients differently; however, these differences between groups have not been studied. Objectives. The aim of this study was to assess differences in QoL and affect by cancer site at the start of outpatient adjuvant chemotherapy, whether QoL and affect change during this treatment, and whether adverse effects influence these variables. Methods. A multicenter longitudinal descriptive study was conducted with 247 participants with breast, colon, or lung cancer at the beginning (T1) and end of treatment (T2). We used the SF-12 Health Survey, Positive and Negative Affect Scale, and an ¿ad hoc¿ adverse effects questionnaire. Results. At the start of chemotherapy, the lung group had poorer Physical Component Summary and poorer positive and negative affect (P < .05) scores. In the end-of-treatment comparisons, breast and colon cancer patients¿ status had worsened, whereas lung cancer patients had tended to stabilize, although they remained the most vulnerable. Adverse effect severity was significant for Physical Component Summary (r = -0.13, P = .035), with decreases in positive affect (r = -0.17, β= -.16) and increases in negative affect (r = 0.15, β= .14). Conclusions. Changes in QoL and emotional state differ between groups, implying a need for varying levels of follow-up and emotional support. Patients with lung cancer seem particularly vulnerable. Implications for Practice Cancer nurses could strengthen the assessment of patients undergoing chemotherapy using more sensitive instruments such as the Positive and Negative Affect Scale and considering differences by cancer site, to provide care tailored to individual patient needs and preferences.
Open Access
Use of telehealth among cancer survivors: a scoping review
(Mary Ann Liebert, Inc., 2023) Irurita Morales, Paula; Soto Ruiz, María Nelia; San Martín Rodríguez, Leticia; Escalada Hernández, Paula; García Vivar, Cristina; Ciencias de la Salud; Osasun Zientziak
Background: Long-term cancer survivors have specific needs that are frequently neglected. Telehealth, as a new form of health care, can benefit this growing population.Objective: To identify, analyze, and synthesize the existing evidence on the use of telehealth in the care of cancer survivors after the end of treatment.Methods: A scoping review was conducted in the databases PubMed, CINAHL, COCHRANE, SCIELO, DIALNET, and LILACS and reference institutions in cancer.Results: The initial search yielded 406 publications with 59 articles meeting the eligibility criteria. There are different types of telehealth (video calls, phone calls, websites, mobile applications, and short message services) used for the care of cancer survivors. Most telehealth interventions focus on improving the physical and mental spheres of quality of life in the extended survival phase (from 1 to 3 years postdiagnosis), with only two articles (3%) on long-term cancer survivors (>5 years postdiagnosis). Survivors are satisfied with telehealth interventions, noting the importance of improving comprehensibility, personalization of the platforms, and the lack of excessive information included.Conclusions: Telehealth is a feasible modality for cancer survival care. The scarcity of interventions aimed at long-term survivors stands out, as does the general neglect of the social and spiritual spheres of quality of life.Implications for Practice: Telehealth platforms must adapt their content, format, and items to the preferences reported by the survivors.
Open Access
Effectiveness of digital health on the quality of life of long-term breast cancer survivors: a systematic review
(Elsevier, 2023) Pimentel Parra, Gustavo Adolfo; Soto Ruiz, María Nelia; San Martín Rodríguez, Leticia; Escalada Hernández, Paula; García Vivar, Cristina; Ciencias de la Salud; Osasun Zientziak
Objectives: To identify, critically appraise, and synthesize the available evidence on the effectiveness of digital health interventions to improve the quality of life or any of its four dimensions (physical, psychological, social, and spiritual) in women survivors of breast cancer who are in the extended or permanent survival stage. Data Sources: Systematic review—Four databases were searched: PubMed, CINAHL, PsycINFO, and Web of Science. Conclusion: The clinical evidence shows a positive relationship or association between eHealth use and improved quality of life in breast cancer survivors at extended or permanent survival stage. However, the findings point to a deficit in the assessment of the social and spiritual domains that play a fundamental role in the quality of life of survivors. Implication for Nursing Practice: The findings found reflect implications of great value for nursing practice because these professionals are the main users of digital health tools to provide them to patients. Using these digital tools contributes to improving evidence-based practice and providing greater efficiency and effectiveness in the care of long-term cancer survivors.
Open Access
Web-based personalized intervention to improve quality of life and self-efficacy of long-term breast cancer survivors: study protocol for a randomized controlled trial
(MDPI, 2022) Soto Ruiz, María Nelia; Escalada Hernández, Paula; San Martín Rodríguez, Leticia; Ferraz Torres, Marta; García Vivar, Cristina; Ciencias de la Salud; Osasun Zientziak
Long-term breast cancer survivors (>5 years free of disease) may suffer late sequelae of cancer that impact on their quality of life. The use of telehealth for cancer care is recommended but little is known about the effectiveness of digital interventions for long-term cancer survivors. This study aims to evaluate the effectiveness of a web-based personalized intervention based on artificial intelligence instead of usual primary health care to improve the quality of life of long-term survivors of breast cancer and self-efficacy for the management of late sequelae. A randomized controlled trial will be conducted. The sample will consist of long-term breast cancer survivors recruited from primary health centers. Women will be randomly assigned to the intervention group to receive a web-based personalized intervention or to the control group to receive standard primary health care by nurses. Data on quality of life of cancer survivors and self-efficacy for the management of late sequelae of cancer will be collected and assessed at preintervention, and at 3, 6, and 9 months. It is expected that, at the end of the programme, the experimental group will have improved quality of life and improved self-efficacy for the management of late sequelae of cancer.