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  • br The unique contribution of this work is that

    2020-03-17


    The unique contribution of this work is that, following the basic principles Hexa His tag peptide of translational research, it gathers empirical data from informal caregivers of dependent patients with cancer that can be used to design effective intervention pro-grams and to prioritize resources.18 Recent conceptualizations of translational research emphasize its multidisciplinary and multidirectional character to reduce the incidence and prev-alence of psychological, behavioral, and physical disor-ders.19,20 It also points out the need to reduce the gap between the scientific and service communities, to design effective interventions into typical care settings and disseminate them to as many Hexa His tag peptide as possible.21 In this line, we propose the implementation of empirical knowledgeebased inter-vention programs from the hospital setting, to facilitate accessibility for all the agents involved: patients, informal caregivers, and medical staff.
    Therefore, the specific objectives of this article were to describe and quantify the following: (i) the sociodemographic characteristics of typical informal caregivers of dependent patients with cancer; (ii) the different types of care provided by informal caregivers; (iii) the symptoms due to burdens and their impact on the quality of life perceived by the informal caregiver as a result of providing care; and (iv) the unmet needs presented by informal caregivers. The study included informal caregivers of dependent patients with cancer, regardless of their diagnosis, treatment, or age, because they all have similar care demands. In fact, a recent systematic review found that caregivers of palliative care or terminal patients often report a higher prevalence of unmet needs than cancer survivors.5 However, very few interventions have been carried out to support caregivers of patients in advanced stages, and, in most cases, they have not been rigorously designed and evaluated.
    Methods
    A cross-sectional design and survey methodology were used for descriptive purposes. In collecting the data, self-administered questionnaires were combined with personal interviews.
    To achieve the objectives proposed in the introduction, different analyses were carried out. Information about socio-demographic characteristics of typical informal caregivers of dependent patients with cancer were collected through the Interview Protocol of the main caregiver, and a frequency analysis was carried out for each of the variables. The different types of care provided by informal caregivers were evaluated through part 1 of the Questionnaire ICUB97, and a frequency analysis of the responses was also carried out. The information about the symptoms due to burdens and their impact on the quality of life, as well as the unmet needs, was obtained through two different instruments. First, a list of symptoms and needs was compiled through the answers to the open questions of the second part of the Interview Pro-tocol of the main caregiver. Then, from the answers to the second part of the Questionnaire ICUB97, the percentage of participants who had suffered different symptoms and con-sequences derived from the care was calculated. Finally, through the answers to the survey of hospital quality, we calculated the percentage of participants who had different unmet needs.
    Participants
    All procedures performed in studies involving human partic-ipants were in accordance with the ethical standards of the research committee of the ‘Hospital General Universitario de Valencia’ (CPMP/ICH/135/95) and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all individual participants included in the study. The sample was composed of 132 informal caregivers of dependent patients with cancer from the University General Hospital of Valencia, Spain, (hereinafter HGUV). The eligible participants were identified through the patient database of the oncology service, over the 4-month data collection period. All eligible caregivers were contacted, and after verifying that Mb met the inclusion criteria, they were invited to participate in the project. Spe-cifically, informal caregivers had to meet the following criteria: they had to be first- or second-degree relatives of the cancer patient, aged at least 18 years, and live with the patient or visit them at least 6 times a week with the purpose of applying specific care related to the disease. In the case of the cancer patients, they had to be older than 18 years, have received the diagnosis at least 6 weeks before filling out the questionnaires, present significant symptoms that would require specific and frequent attention, and obtain a score between and 75 in the Barthel Index,22 a test that assesses the level of patient independence with respect to the perfor-mance of basic activities of daily living. The scores should be interpreted as follows: 0e20, total dependence; 21e60, severe dependence; 61e90, moderate dependence; 91e99, slight dependence; and 100, independence. The exclusion criteria