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Palliative care

Palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members

Background: The role of cystic fibrosis (CF) care team members in delivering palliative care (PC) remains undefined. We aimed to understand the PC skills of CF care teams.

Methods: CF care team members ("clinicians"), adults with CF ("patients"), and family caregivers ("caregivers") rated the ability of CF clinicians to provide aspects of PC using a five-point scale ("poor" to "excellent"). Median ratings were compared between groups.

Tue, 12/20/2022 - 12:50

Parental experiences with a paediatric palliative care team: A qualitative study

Background: Parents of children with a life-limiting disease have to rely on themselves at home while adequate paediatric palliative care is lacking. In several countries, paediatric palliative care teams are introduced to ensure continuity and quality of care and to support the child and the family. Yet, little is known about how parents experience such multidisciplinary teams.

Tue, 12/20/2022 - 11:23

End of life care for infants, children and young people with life limiting conditions: summary of NICE guidance

Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years.

Tue, 12/20/2022 - 09:49

Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review

Background: Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate.

Tue, 12/20/2022 - 08:27

Impact of a Massage Therapy Intervention for Pediatric Palliative Care Patients and Their Family Caregivers

Context: All inpatient children receiving pediatric palliative care consults at a free-standing children's hospital.

Tue, 12/13/2022 - 16:56

Feeling called to care: a qualitative interview study on normativity in family caregivers' experiences in Dutch home settings in a palliative care context

Background: Family caregivers, such as partners or other family members, are highly important to people who desire to stay at home in the last phase of their life-limiting disease. Despite the much-investigated challenges of family caregiving for a patient from one's direct social network, lots of caregivers persevere. Objectives: To better understand why, we aimed to specify how normative elements - i.e. what is considered good or valuable - shape family caregivers' experiences in Dutch home settings.

Fri, 09/02/2022 - 10:56

Self-care, resilience, and caregiver burden in relatives of patients with advanced cancer: results from the eQuiPe study

Background: Relatives are often involved in caregiving for patients with advanced cancer and carry a heavy burden. Self-care and resilience might be beneficial to enhance their wellbeing and burden-bearing capacity. Objectives: This study assessed the engagement in self-care and resilience in relatives of patients with advanced cancer and its association with their caregiver burden.

Thu, 09/01/2022 - 16:57

The Supportive Care Needs of Primary Caregivers of Lung Transplant Candidates

Background: Caring for people with advanced illness has an impact on caregivers' physical, psychological, and emotional health. Patients being evaluated for lung transplantation or those on the transplant waitlist are required to have identified social support. However, little is known about the caregivers' specific supportive care needs. Objective: The aim of this study was to determine the supportive care needs of informal caregivers of patients who are being evaluated for or awaiting lung transplantation.

Thu, 09/01/2022 - 10:39

Exploration of caregiver experiences of conservatively managed end‐stage kidney disease to inform development of a psychosocial intervention: The acorn study protocol

Background: End‐stage kidney disease (ESKD) is an overwhelming illness that impacts not just patients, but also their informal carers. Patients who opt for conservative management rather than dialysis experience difficult symptoms and the psychosocial consequences of their condition.

Thu, 09/01/2022 - 10:26

The Palliative Care Information Needs of Patients with Amyotrophic Lateral Sclerosis and their Informal Caregivers: A Scoping Review

Background: Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease, associated with impaired quality of life for patients and caregivers. As treatment is largely supportive, early involvement of palliative care (PC) is recommended as standard of care. Despite this, literature surrounding PC information needs is limited. Objectives: To explore the PC information needs of patients with ALS and their caregivers and identify gaps in the literature.

Tue, 08/30/2022 - 20:08

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