Palliative and supportive care needs of patients with high-grade glioma and their carers: A systematic review of qualitative literature

The transition of palliative care from the hospital to the home: a narrative review of experiences of patients and family caretakers

“…23 For their part, the patients often felt that the application of protocols and paths for action in the in the health institutions overcame the individualized care and the assessment of their real needs. 21,24 Feelings of having been discharged early or without being prepared were frequent complaints within the prioritization of institutional processes over the individuality of the subjects.…”

“…16 Additionally, honesty in communication was especially valued by the dyads; a concrete example is the importance of communicating in clear, delicate and simple manner about the proximity of death. 18,24 However, it also became evident that is was important to measure correctly how much the families already know and how much they want to know, given that in some cases, providing too much information may generate tension and anxiety in the dyad when it is not furnished at the right moment. 18,22 Besides, scarce communication or its late start and the use of difficult-to-understand language may also entail difficulties for the dyad.…”

“…18,22 Besides, scarce communication or its late start and the use of difficult-to-understand language may also entail difficulties for the dyad. [15][16][17]19,23,24 Some problems derived from insufficient communication were: difficulty in handling certain situations at home, 18 inadequate understanding among the different levels of care, confusion in recognition of the professional roles, 19 and the range of services provided by the health institutions or offered in the community. 16,17,23 The following interview extract reflects the value granted by the family caretakers when communication is good: "He (the physician) answered questions in my language and said things in a way we could understand...…”

“…These needs included: education in managing symptoms, [15][16][17][18]22,24,28 management of medications, 16,18 assisting patients in daily life activities, 16,19,22,28 resources available in the community 16,19 , and addressing emergencies at home. 28 Due to the scarce information provided on occasions by health professionals or to its generalization during hospital discharge, 16,24 family caretakers identified problems related to moving the patients at home, ignorance of the diet they could supply, 22,23 readjustments of medication dosage, uncontrolled symptoms, 28 and feelings of uselessness and confusion. 15,18 Continuous support to the dyad at home…”

“…As expressed by the dyads, there was a need for: access to anticipated social support or description of how to have access to it, 19,20,24,27 education in self-care, 15,22 favor leisure time for the caregiver, 22 and provide support in the disease's economic burden. 16 Also, the relatives demand increased social-health spaces that allow for a break and the wellbeing of caregivers, while also securing quality attention for the sick person.…”