Living With Advanced Illness: Longitudinal Study of Patient, Family, and Caregiver Needs

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

“…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.…”

“…17,19 With respect to monitoring at home by a health professional, evidence demonstrated that it favored management of medication and control of symptoms, diminishes patient and caregiver uncertainty, facilitates discussion around endof-life themes, provides nutritional advice, helps with handling technical equipment, and gives individuals a sense of security and supervision in the care labor. 15,17,19,20,22,23,27 Lastly, the dyads who did not receive support after hospital discharge described learning how to handle the sick person at home through trial and error, 28 delays when seen by reference personnel in the community due to their unawareness, 15,16,26 expecting little from the home healthcare 22 , and neglect by the attending hospital. 21 Care overload: social support for the family caretaker…”

“…Among the principal problems identified, there are loss of employment or reduction of the hours destined to caring for the sick person, 27 physical-emotional exhaustion, onset of diseases, 15,17,26 lack of effective coping with the disease, little time for themselves, 21 and increased dependence on the role of the caregiver. 15 The following extract evidences the experience of a caregiver: I feel I am in prison here with him and every day is like… the previous one.…”

Encontrar sentido para continuar viviendo el reto al perder un hijo por cáncer infantil: revisión integrativa

“…En el marco del cuidado de seres humanos en su experiencia de salud, como fenómeno existencial que implica relaciones y que se da en un contexto (22), es necesario considerar a las personas que proveen cuidados al final de la vida y configurarse en sí mismos en sujetos de cuidado por parte de los profesionales de salud (23). En el caso de los padres cuidadores de niños que mueren por cáncer, la experiencia de cuidar desde el diagnósti-co hasta el fallecimiento del niño tiene fuertes matices de adversidad y si se considera que la experiencia no termina con la muerte, es preciso clarificar qué ocurre después, ya que los padres continúan viviendo.…”

Dificuldades De Cuidadores De Pacientes Em Cuidados Paliativos Na Estratégia Da Saúde Da Família

“…3 A lack of a culture to share care actions among healthcare providers in the different spheres of the healthcare network still presents a barrier to the optimization of palliative care, as it hinders mapping cases that demand this type of care. 13 Even though the Relieving Pain and Palliative Care Brazilian Program was implemented more than ten years ago, a national policy is still needed to connect initiatives to provide care at the end of life within a mainly palliative and integrated model, 11 intending to improve quality of life by alleviating pain and controlling symptoms allied with psychosocial, spiritual, and multidisciplinary support provided both to patients and their family members. and play an important role in the management of the disease.…”