Articles: caregivers.
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Observational Study
Opioids and constipation therapy in the last week of life: Their impact on patients, caregivers, and the location of death.
The use of opioids to control pain at the end of life may cause constipation, a symptom that can negatively influence the well-being of patients and caregivers. The main aim of this study was to evaluate the impact of constipation on symptomatic control and patients' overall quality of life at this stage. A particular focus was placed on opioids. ⋯ Constipation in the last week of life does not seem to influence the well-being of patients or their caregivers significantly and the individualization of intensive treatment of constipation is needed. Different opioids have different probabilities of causing adverse effects such as constipation. Future special support mechanisms can be created and activated for the most tired caregivers to avoid exhaustion and promote death at home, if that is the patient's will.
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Apathy is a common non-motor symptom of Parkinson disease (PD) that can affect the health-related quality of life (HRQoL) of patients and caregivers. This study aimed to investigate the clinical determinants of apathy and its impact on HRQoL in patients with early PD. We enrolled 324 patients with early PD with modified Hoehn-Yahr stages 1 to 3 and a disease duration ≤5 years. ⋯ Independent predictors of the PDQ-8 score in the multivariate regression analysis were UPDRS-III, UPDRS-II, NMSS total, NMSS domain 3, Beck Anxiety Inventory, and AES scores. In the present study, apathy was an independent predictor of HRQoL in patients with early PD. Therefore, identifying and managing apathy could help improve HRQoL in patients with early PD.
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J Pain Symptom Manage · Jan 2023
ReviewLayers of Loss: A Scoping Review and Taxonomy of HD Caregivers' Spiritual Suffering, Grief/Loss and Coping Strategies.
Huntington's disease (HD), an incurable, multi-generational, autosomal dominant disorder, creating unique challenges and a myriad of spiritually-related stressors in those affected and their familial caregivers. Spiritual suffering, experiences of grief/loss, and coping strategies have not been systematically studied in HD caregivers. ⋯ HD caregivers experience prolonged grief and other forms of spiritual suffering as they progressively lose their loved ones and disruption to their own lives. With an improved assessment tool, teams with spiritual and palliative care experts will better be able to support HD family caregivers.
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Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence of an illness, and therefore several studies have tended to focus on the adaptation of parent caregivers. The aim of the present study is to present a psychological experience assessment protocol of parents in PPC. ⋯ Results: On the basis of the latter, 10 dimensions of the experience in the parental subsystem were explored through parents' own perspective, namely: confrontation with the diagnosis; representation of the illness; emotional impact; day-to-day challenges; family impact; resources and social support; coping strategies; posttraumatic growth; representation of the sick child; and future perspectives. Discussion: The protocol can be used in person or remotely and its application enables the identification of specific needs and the establishment of psychotherapeutic goals and strategies for each family, thus enhancing their well-being and resilience, from an eco-systemic perspective. Conclusions: The protocol is presented in detail and its importance in the context of research and systemic intervention in PPC is discussed.
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Pediatr Crit Care Me · Jan 2023
Prognostic and Goals-of-Care Communication in the PICU: A Systematic Review.
Admission to the PICU may result in substantial short- and long-term morbidity for survivors and their families. Engaging caregivers in discussion of prognosis is challenging for PICU clinicians. We sought to summarize the literature on prognostic, goals-of-care conversations (PGOCCs) in the PICU in order to establish current evidence-based practice, highlight knowledge gaps, and identify future directions. ⋯ Future research should identify evidence-based communication practices that enhance caregiver-clinician PGOCC in the PICU and address: 1) caregiver and clinician perspectives of underserved and limited English proficiency populations, 2) inclusion of caregivers who are not physically present at the bedside, 3) standardized communication training programs with broader multidisciplinary staff inclusion, 4) improved design of patient and caregiver educational materials, 5) the development of pediatric decision aids, and 6) inclusion of long-term post-PICU outcomes as a measure for PGOCC interventions.