Neuro-oncology family caregivers’ view on keeping track of care issues using eHealth systems: it’s a question of time

Abstract

Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients’ best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers’ satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-to-use ‘blended care’ instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country- or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.

Neuro-Oncological Symptoms: A Longitudinal Quantitative Study of Family Function, Perceived Support, and Caregiver Burden

“…This was followed by an improvement for both caregivers and patients. Potential explanations for these findings warrant further consideration, for example, (a) the high caregiver rating for anxiety and depressive symptoms during oncological treatment corresponds to the fact that seven patients died, possibly attesting to a distressing end-of-life period; (b) the caregivers identified as highly engaged in the course of the disease and treatment of the patients are challenged by a lack of energy and difficulties in managing the patients' limitations, for example, cognitive changes (Piil et al, 2018); and, notably, (c) the caregivers' mood was strongly connected to the patients' prevalence and severity of symptoms (Boele, Given, et al, 2017;Boele, van Uden-Kraan, et al, 2017). Close analysis of MDASI-BT results showed that patients suffered from the highest number of symptoms (5.3 symptoms) at Week 30, when the most prevalent symptoms were fatigue, change in bowel pattern, remembering things, lack of appetite, and feeling sad and being distressed.…”

Necesidades de cuidadores familiares de personas con enfermedades huérfanas: cerrando brechas a través del cuidado enfermero

“…Respecto al primero, Yoo et al (2019), encontró la necesidad manifestada de recibir asesoramiento y apoyo durante el proceso salud-enfermedad, en el diagnóstico, tratamiento y hospitalizaciones. En cuanto al segundo, Somanadhan y Larkin, (2016), Landfeldt et al (2018), Uttley et al (2018), Magliano et al (2014), Boele et al (2017) y otros, enfatizaron que los cuidadores afrontan la situación sin apoyo psicológico y de manera empírica, obligándose a permanecer con una actitud positiva para mantener unida a la familia, lo cual se constituye en todo un desafío y una lucha emocional en la aceptación del diagnóstico y búsqueda de opciones de tratamiento. Este vacío en el trabajo multidisciplinar y el de Enfermería, establece otra brecha que el cuidado puede estrechar por medio de una conexión efectiva entre el cuidador y demás profesionales de la salud (JAE_v79n5.pdf, s. f.).…”

“…Por otro lado, las necesidades sanitarias se evidenciaron en diferentes perspectivas, desde la que resalta el soporte que proporciona el equipo multidisciplinario, como lo afirmó Soares et al (2016) y Boele et al (2017), como la que alerta sobre la insensibilidad, desconsideración, falta de empatía y conocimientos, como lo ratifican Bose et al (2019) y Rice et al (2019). El abordaje diagnóstico de la enfermedad fue descrito como una experiencia complicada, por la manifestación de los síntomas y ejecución de múltiples pruebas que en diversos casos causaron agotamiento e incertidumbre (Palacios-Ceña et al, 2018) y (Baumbusch et al, 2019).…”

“…Además de ello, (Tejada et al (2019) referenció que los cuidadores no tienen apoyo para compatibilizar su vida laboral. No obstante, Boele et al (2017) manifestó que algunos cuidadores recibieron apoyo en el trabajo, lo cual puede convertirse en elemento positivo, porque pudieron desempeñarse en su entorno laboral y de igual forma contar con un espacio para el cuidado de su ser querido y solventar las necesidades financieras.…”

A Mobile App–Based Intervention Program for Nonprofessional Caregivers to Promote Positive Mental Health: Randomized Controlled Trial

“…There are intervention and/or support programs that have been positively evaluated [ 12 - 15 ], although most of them are based on in-person training. However, research has shown that many caregivers underutilize the supports available to them and instead try to handle everything by themselves [ 16 , 17 ]. The barriers that hinder access to in-person support programs include a lack of coordinated home care services [ 18 ], the multiple occupations and intensive dedication required by family care [ 19 ], geographical or transportation limitations, and the caregivers’ own health problems [ 20 , 21 ].…”