Caregiver and Palliative Care

Palliative care aims to improve the quality of life of both the palliative care patient and their caregiver. Palliative care caregivers care for palliative care patients who suffer from symptoms and unmet needs. Most reviews and research to date have focused on the palliative patient, also called the care recipient. However, we still have little knowledge about the palliative care caregivers, including the risk factors of these caregivers becoming overburdened leading to caregiver burnout. The objective of this review was to examine the responsibilities of palliative care caregivers and the associated risks of these caregivers developing caregiver burden. We review the caring work of the caregivers, the types of caregivers, the differences between palliative care and general caregivers, the different types and levels of problems they face in caring for their patients and the risk factors of developing palliative care caregiver burden. We hope this review will increase awareness of this problem and help to improve the palliative care system to look after the needs of not only the patients in the system but also the patients’ caregivers, who play such an important role.

Factors Affecting the Family Burden of the Palliative Family

The process of palliative patient care indirectly causes a burden on the family. This study aims to determine the description of the family burden in caring for palliative patients. This study is a qualitative research with a phenomenological study design. Participant criteria are families who care for patients for at least 6 months. The number of respondents in this study were 4 respondents as care givers of palliative patients. The research method using the analysis method used includes categorizing themes, compiling sub-categorization of themes and the last is the coding process. The results of the study showed that there was a description of the family burden of palliative patients and a description of the factors that influenced palliative patients including economic status, patient complaints, family support, family perception, availability of treatment support tools, and the ability of families to manage family burdens. The burden on the family can be reduced by training the family to manage the existing factors.

Design and evaluation of a learning assignment in the undergraduate medical curricula on the four dimensions of care: a mixed method study

Background Chronic and palliative care are rapidly gaining importance within the physician’s range of duties. In this context, it is important to address the four dimensions of care: physical, psychological, social, and spiritual. Medical students, however, feel inadequately equipped to discuss these dimensions with the patient. To bridge this gap, a new assignment was developed and implemented, in which students talked to a chronic or palliative patient about the four dimensions of care during an internship. This study, reports the evaluation of this assignment by students and teachers using a design-based approach. Methods Mixed methods were used, including a) student questionnaires, b) student focus groups, c) teacher interviews, and d) student’s written reflections. Two researchers performed analyses of the qualitative data from the focus groups, interviews, and written reflections using qualitative research software (ALTLAS.TI). Descriptive statistics were computed for the quantitative data using SPSS 21.0. Results Students and teachers valued talking to an actual patient about the four dimensions of care. Reading and providing peer feedback on each other’s reports was considered valuable, especially when it came to the diversity of illnesses, the way that patients cope and communication techniques. The students considered reflection useful, especially in the group and provided it was not too frequent. All the dimensions were addressed in the interviews, however the spiritual dimension was found to be the most difficult to discuss. The analysis of the written reflections revealed an overlap between the social and spiritual dimensions. Students pay a lot of attention to the relationship between the illness and the patient’s daily life, but the reflections do often not show insight in the potential relationship between the four dimensions and decisions in patient care. Conclusions During internships, medical students can practice talking about four dimensions of care with a chronically ill or palliative patient. Due to the format, it can be implemented across existing internships with relatively little extra time and effort. Reflection, peer feedback, and group discussion under the guidance of a teacher are important additions.

Why Are we Missing the Teeth? Addressing Oral Care Neglect in the Palliative Patient

Palliative care is meant to comfort and console the mind, body, and spirit of the individual nearing the end of life to improve the quality of one’s existence. It focuses on those with symptoms and stressors secondary to serious illnesses such as in cancer, pneumonia, Parkinson’s disease, Alzheimer’s, hypertension, diabetes, and microbial diseases. For several reasons, however, oral care and the consequences thereof in most cases go without notice for these patients. Further, the dentist is rarely, if ever, listed as necessary staff in hospice care programs. Because terminal patients’ symptoms can include depression, pain, anxiety, loss of appetite, nausea, fatigue, among other issues, all related to speaking, chewing, and deglutition, this chapter will discuss why care of the mouth and dentition is typically lacking both in at-home and institutional environments, why such care is necessary, and best to meet the oral needs of patients in the later stages of life.

The role of research in improving responsiveness of palliative care to migrants and other underserved populations in the Netherlands: a qualitative interview study

Background The aging of migrant populations across Europe challenges researchers in palliative care to produce knowledge that can be used to respond to the needs of the growing group of patients with a migration background and address ethnic disparities in palliative care. The aim of this study was to identify what factors influence researchers’ efforts to address responsiveness of palliative care to patients with a migration background and other underserved populations in their projects. Methods We conducted semi-structured interviews with 11 researchers involved in seven projects under the Dutch national program for palliative care innovation. Results Researchers’ efforts to address responsiveness of palliative care in their projects were influenced by individual factors, i.e. awareness of the need for responsiveness to patients with a migration background; experience with responsiveness; and, differences in perceptions on responsiveness in palliative care. Researchers’ efforts were furthermore influenced by institutional factors, i.e. the interaction with healthcare institutions and healthcare professionals as they rely on their ability to identify the palliative patient with a migration background, address the topic of palliative care, and enrol these patients in research; scientific standards that limit the flexibility needed for responsive research; and, the responsiveness requirements set by funding agencies. Conclusion Researchers play a key role in ensuring research addresses responsiveness to patients with a migration background. Such responsiveness may also benefit other underserved populations. However, at times researchers lack the knowledge and experience needed for responsive research. To address this we recommend training in responsiveness for researchers in the field of palliative care. We also recommend training for healthcare professionals involved in research projects to increase enrolment of patients with a migration background and other underrepresented populations. Lastly, we encourage researchers as well as research institutions and funding agencies to allow flexibility in research practices and set a standard for responsive research practice.