Interprofessional collaboration in palliative dementia care through the eyes of informal caregivers.
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ABSTRACT:
SUBMITTER: Khemai C
PROVIDER: S-EPMC9301172 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:IntroductionMore persons with dementia are residing in the community as many countries shift from residential care to home and community care. Although there are many forms of care and support available to avoid crisis situations and prolong community living, it remains unclear how these are valued by community-dwelling persons with dementia and their informal caregivers. Understanding perspectives of persons with dementia and informal caregivers on care characteristics is a vital step in valuing care services. This study aims to prioritize care characteristics for community-dwelling persons with dementia and informal caregivers with the use of an innovative mixed-methods approach.MethodsSix mixed focus groups were conducted in The Netherlands with persons with dementia (n = 23) and informal caregivers (n = 20), including a quantitative ranking exercise that prioritized seven care and support characteristics from "most important" to "least important," followed by a group discussion about the prioritization. Audio recordings were transcribed and analyzed using thematic analysis.ResultsThe ranking exercise and discussion showed that persons with dementia favored in-home care, help with daily activities, and social activities, whereas informal caregivers favored social activities, information about dementia, navigating the health care system, and emotional support.DiscussionPersons with dementia prioritized day-to-day activities, whereas informal caregivers preferred assistance with organizing care and coping with caregiving. This study created a method to capture the care preferences of persons with dementia and informal caregivers.
| S-EPMC8346735 | biostudies-literature
Project description:BackgroundAlthough it is often recommended that general practitioners (GPs) initiate advance care planning (ACP), little is known about their experiences with ACP. This study aimed to identify GP experiences when conducting ACP conversations with palliative patients, and what factors influence these experiences.MethodsDutch GPs (N = 17) who had participated in a training on timely ACP were interviewed. Data from these interviews were analysed using direct content analysis.ResultsFour themes were identified: ACP and society, the GP's perceived role in ACP, initiating ACP and tailor-made ACP. ACP was regarded as a 'hot topic'. At the same time, a tendency towards a society in which death is not a natural part of life was recognized, making it difficult to start ACP discussions. Interviewees perceived having ACP discussions as a typical GP task. They found initiating and timing ACP easier with proactive patients, e.g. who are anxious of losing capacity, and much more challenging when it concerned patients with COPD or heart failure. Patients still being treated in hospital posed another difficulty, because they often times are not open to discussion. Furthermore, interviewees emphasized that taking into account changing wishes and the fact that not everything can be anticipated, is of the utmost importance. Moreover, when patients are not open to ACP, at a certain point it should be granted that choosing not to know, for example about where things are going or what possible ways of care planning might be, is also a form of autonomy.ConclusionsACP currently is a hot topic, which has favourable as well as unfavourable effects. As GPs experience difficulties in initiating ACP if patients are being treated in the hospital, future research could focus on a multidisciplinary ACP approach and the role of medical specialists in ACP. Furthermore, when starting ACP with palliative patients, we recommend starting with current issues. In doing so, a start can be made with future issues kept in view. Although the tension between ACP's focus on the patient's direction and the right not to know can be difficult, ACP has to be tailored to each individual patient.
| S-EPMC6263059 | biostudies-literature
Project description:The purpose of this study was to evaluate the acceptability of and satisfaction with an interprofessional educational workshop to teach family caregivers of persons living with dementia to provide complex care. The workshop was developed by a team that included nursing, occupational therapy, speech-language pathology, nutrition and dental hygiene. Caregivers who attended the workshop completed an evaluation to describe their satisfaction and acceptability using a Likert-type scale, as well as open ended comments about their learning needs and feedback about the workshop. Semi-structured interviews were conducted with family caregivers and members of the interprofessional team to analyze and evaluate how the workshop may have improved their confidence in performing complex tasks and to obtain their perspectives on offering this program as a virtual workshop in the future. Family caregivers (n=171) reported high satisfaction with the workshop and strongly agreed that the workshop provided them with useful information to support their caregiving roles. Themes identified from the content of the interviews were: i) building understanding; ii) mastering new skills; and iii) learning skills together. Our results suggest and emphasize the importance and the benefits of an interprofessional team approach to support family caregivers and build confidence with complex care.
| S-EPMC8716014 | biostudies-literature
Project description:BackgroundDue to a growing shortage in residential care, people with dementia will increasingly be encouraged to live at home for longer. Although people with dementia prefer extended independent living, this also puts more pressure on both their informal and formal care networks. To support (in)formal caregivers of people with dementia, there is growing interest in unobtrusive contactless in-home monitoring technologies that allow caregivers to remotely monitor the lifestyle, health, and safety of their care recipients. Despite their potential, these solutions will only be viable if they meet the expectations and needs of formal and informal caregivers of people with dementia.ObjectiveThe objective of this study was to explore the expected benefits, barriers, needs, and requirements toward unobtrusive in-home monitoring from the perspective of formal and informal caregivers of community-dwelling people with dementia.MethodsA combination of semistructured interviews and focus groups was used to collect data among informal (n=19) and formal (n=16) caregivers of people with dementia. Both sets of participants were presented with examples of unobtrusive in-home monitoring followed by questions addressing expected benefits, barriers, and needs. Relevant in-home monitoring goals were identified using a previously developed topic list. Interviews and focus groups were transcribed and inductively analyzed. Requirements for unobtrusive in-home monitoring were elicited based on the procedure of van Velsen and Bergvall-Kåreborn.ResultsFormal and informal caregivers saw unobtrusive in-home monitoring as a support tool that should particularly be used to monitor (the risk of) falls, day and night rhythm, personal hygiene, nocturnal restlessness, and eating and drinking behavior. Generally, (in)formal caregivers reported cross-checking self-care information, extended independent living, objective communication, prevention and proactive measures, emotional reassurance, and personalized and optimized care as the key benefits of unobtrusive in-home monitoring. Main concerns centered around privacy, information overload, and ethical concerns related to dehumanizing care. Furthermore, 16 requirements for unobtrusive in-home monitoring were generated that specified desired functions, how the technology should communicate with the user, which services surrounding the technology were seen as needed, and how the technology should be integrated into the existing work context.ConclusionsDespite the presence of barriers, formal and informal caregivers of people with dementia generally saw value in unobtrusive in-home monitoring, and felt that these systems could contribute to a shift from reactive to more proactive and less obtrusive care. However, the full potential of unobtrusive in-home monitoring can only unfold if relevant concerns are considered. Our requirements can inform the development of more acceptable and goal-directed in-home monitoring technologies to support home-based dementia care.
| S-EPMC8076981 | biostudies-literature
Project description:To enhance audiology and physician assistant (PA) student appreciation for collaboration/team-based care through an interprofessional educational activity focused on hearing assessments.A total of 18 students from Louisiana State University Health-New Orleans's audiology and PA programs participated in an optional interprofessional education learning opportunity, which included a demonstration of hearing assessments. To assess student perspectives regarding interprofessional learning, the students completed pre- and post-surveys.Eighteen students completed a survey, including 5 questions using a Likert scale and 1 open-ended question. Both audiology and PA students demonstrated significant statistical improvement in 2 interprofessional competencies: roles/responsibilities and interprofessional communication. Students also reported increased awareness and knowledge in the skills of the opposite professions as related to hearing assessments.Integrating interprofessional education experiences within an audiology program promotes collaborative practice patterns and supports new educational accreditation standards.https://doi.org/10.23641/asha.5491669.
| S-EPMC6105117 | biostudies-other
Project description:Dementia syndrome is common and expected to increase significantly among older people and characterized by the loss of cognitive, psychological and physical functions. Palliative care is applicable for people with dementia, however they are less likely to have access to palliative care. This narrative review summarizes specifics of palliative care in advanced dementia. Most people with advanced dementia live and die in institutional care and they suffer a range of burdensome symptoms and complications. Shortly before dying people with advanced dementia suffer symptoms as pain, eating problems, breathlessness, neuropsychiatric symptoms, and complications as respiratory or urinary infections and frequently experience burdensome transitions. Pharmacological and nonpharmacological interventions may reduce symptom burden. Sensitive observation and appropriate assessment tools enable health professionals to assess symptoms and needs and to evaluate interventions. Due to lack of decisional capacity, proxy decision making is often necessary. Advanced care planning is an opportunity establishing values and preferences and is associated with comfort and decrease of burdensome interventions. Family carers are important for people with advanced dementia they also experience distress and are in need for support. Recommendations refer to early integration of palliative care, recognizing signs of approaching death, symptom assessment and management, advanced care planning, person-centered care, continuity of care, and collaboration of health care providers.
| S-EPMC7394698 | biostudies-literature
Project description:Primary palliative care is a fundamental aspect of high-quality care for patients with a serious illness such as dementia. The clinician caring for a patient and family suffering with dementia can provide primary palliative care in numerous ways. Perhaps the most important aspects are high quality communication while sharing a diagnosis, counseling the patient through progression of illness and prognostication, and referral to hospice when appropriate. COVID-19 presents additional risks of intensive care requirement and mortality which we must help patients and families navigate. Throughout all of these discussions, the astute clinician must monitor the patient's decision making capacity and balance respect for autonomy with protection against uninformed consent. Excellent primary palliative care also involves discussion of deprescribing medications of uncertain benefit such as long term use of cholinesterase inhibitors and memantine and being vigilant in the monitoring of pain with its relationship to behavioral disturbance in patients with dementia. Clinicians should follow a standardized approach to pain management in this vulnerable population. Caregiver burden is high for patients with dementia and comprehensive care should also address this burden and implement reduction strategies. When these aspects of care are particularly complex or initial managements strategies fall short, palliative care specialists can be an important additional resource not only for the patient and family, but for the care team struggling to guide the way through a disease with innumerable challenges.
| S-EPMC8791082 | biostudies-literature
Project description:BackgroundIn palliative care, caring for spouses suffering from incurable diseases can provoke a range of reactions in informal caregivers that are part of the grieving process, as well as other reactions and ways of coping with a current role, which is often challenging. Anticipatory grief occurs before death and is often present in people who face the eventual loss of a loved one or their own death. This study aimed to gain insight into the anticipatory grief of informal caregivers who are providing at-home palliative care for their ill spouse. Our research questions focus on investigating the meanings caregivers ascribe to the experience of providing palliative care and the impending loss of a spouse.MethodsA qualitative study was conducted in Zagreb, Croatia, from April to June of 2021. Eight participants took part in the study. Participants in the study were informal caregivers of a spouse suffering from an incurable, terminal disease that receives at-home palliative care. Data were collected through semi-structured face-to-face interviews. Transcripts were analyzed by interpretive phenomenological analysis.ResultsThe analysis provided several meanings that represent caregivers' experiences and coping strategies. The caregivers bravely face the challenges of "living with an illness" by maintaining optimism, strong cohesion with their partner and a sense of joint destiny. They tend to repress their own personal needs and feelings while carrying the burden of care. Caregivers tend to stay positive and focus on living in the present by taking an active role in providing care for the ill spouse and family.ConclusionsAnticipatory grief presents emotional, cognitive, and spiritual challenges to spouse caregivers in palliative care. The contribution of this study was to gain insight into the meaning that caregivers ascribe to the experience and challenges they face while providing everyday care for their ill spouse. Confirming prior results, the experiences are generally similar to all caregivers, pointing to the need for substantial improvement in the quality of the support and help from the healthcare workers and other experts who provide palliative care and support for the patients' family members.
| S-EPMC9672539 | biostudies-literature
Project description:Interprofessional education (IPE) is the basis for interprofessional collaboration (IPC) in health care systems. It has beneficial effects for both patients and health care professionals. IPC is paramount for adequate care of patients and their families, especially in pediatrics. To determine the attitudes of medical doctors (n=121), nurses (n=15), psychologists (n=14), and social workers (n=19) toward IPE and IPC in a tertiary pediatric university teaching hospital, as well as the inpatient and outpatient settings in pediatrics, we developed a questionnaire with 21 items in four categories based on established questionnaires. All participants worked as part of interprofessional teams, and the overwhelming majority valued IPC highly. Most competencies important for IPC were acquired on the job. There was a substantial lack of interprofessional education, especially for medical doctors and psychologists. IPE still needs to be established as part of the undergraduate curriculum at German universities.
| S-EPMC4895846 | biostudies-literature
Project description:BACKGROUND:The burden of caring for People with Dementia (PWD) is heavy; identifying incentives that motivate them in providing care is essential in facilitating and optimizing care. This study aims to explore and describe these motivating factors. METHODS:We conducted this qualitative study between January 2016 and January 2017 in Isfahan, Iran. Data were extracted through in-depth, semi-structured interviews with 19 caregivers of PWD. These data were then examined through thematic content analysis. RESULTS:We identified four categories of psychological motives based on the caregivers' feedback and experience. These include 1) Moral-based motives, 2) Religious, and spiritual motives; 3) Financial motives, and 4) Wicked motives. CONCLUSIONS:Our results revealed several aspects of caregivers' motives. They include moral, religious, and spiritual aspects; sharing housing accommodations, and the likelihood of inheriting a portion of the patient's assets based on unspoken rules and informal arrangements in the family, and wicked and immoral aspects. These findings can inform future efforts in enhancing the experiences of caregivers of PWD, and subsequently, the quality of care these patients receive. It further suggests that family members, members of a religious and spiritual organization, as well as social media, could play important roles in setting the stage.
| S-EPMC6883577 | biostudies-literature