Improving Well-Being in Caregivers of Terminally Ill Patients. Making the Case for Patient Suffering as a Focus for Intervention Research

Abstract

Family caregivers are integral to the care of patients with physical or mental impairments. Unfortunately, providing this care is often detrimental to the caregivers' health. As a result, in the last decade, there has been a proliferation of interventions designed to improve caregivers' wellbeing. Interventions for caregivers of persons at end-of-life, however, are relatively few in number and are often underdeveloped. They also are typically designed to help reduce the work of caregiving or to help caregivers cope with the physical and emotional demands of providing care. While useful, these interventions generally ignore a primary stressor for family caregivers-a loved one's suffering. Patient suffering, whether physical, psychosocial, or spiritual, has a major impact on family caregivers. However, interventions that focus on the relief of patient suffering as a way to improve caregiver well-being have rarely been tested. It is our view that more research in this area could lead to new and more effective interventions for family caregivers of seriously or terminally ill patients. In support of our view, we will define suffering and review the relationships between patient suffering and caregiver well-being. We will then discuss a conceptual framework for intervention design. Finally, we conclude with a discussion of implications and future directions for intervention research.

Stress processes in caring for an end-of-life family member: Application of a theoretical model

“…This multidimensional model contains five domains representing the proliferation of stress towards potential outcomes and is considered one of the most comprehensive caregiving frameworks (Ducharme et al, 2006;Haley, LaMonde, Han, Burton, & Schonwetter, 2003;Hauser & Kramer, 2004;Hebert, Arnold, & Schulz, 2007).…”

Contending With Advanced Illness: Patient and Caregiver Perspectives

“…3e5 The physical, psychosocial, and spiritual suffering that can accompany the end stage of life can have a major impact on family caregivers and also can affect their adaptation in bereavement. 6 Within developed nations, palliative care services have been found to improve patient and family outcomes, 7 and hospice has emerged as a model for the provision of optimal endof-life care. 8 Although hospice and palliative care services can reduce suffering, these services remain under-used.…”

“…Enhanced clinician understanding also can limit unwanted aggressive care and contribute to adaptation in bereavement. 6,20 The purpose of this study was to explore patients' and caregivers' experiences and perspectives as they responded to advanced illness and, when relevant, transitioned to comfort-focused care.…”

A Comparative Study on Self Perceived Health and Quality of Life of Parents of Children with Autism Spectrum Disorders and Parents of Non Disabled Children in Croatia

“…Because the parents are in the focus of support for the needs of the child with ASD, preserving p a r e n t s ' g o o d h e a l t h a n d w e l l b e i n g i s precondition for optimal care for child, so current system for treating children with ASD in Croatia should also include permanent improvements their health and well-being.With our findings and with the type of help what parents of children with ASD specified that is important to advance their health and well-being we want provide the basis for permanent improvements their health and well-being. In the world special attention is devoted to the improving caregiver well-being (Brown et al, 2003;Mittelman et al, 2006;Hebert et al, 2007). Organized support for family caregivers benefits the patient, but also the caregiver, and the healthcare team (Glajchen, 2004;Herring et al, 2006).…”