Palliative care for homeless people: a systematic review of the concerns, care needs and preferences, and the barriers and facilitators for providing palliative care.
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ABSTRACT: Homeless people often suffer from complex and chronic comorbidities, have high rates of morbidity and die at much younger ages than the general population. Due to a complex combination of physical, psychosocial and addiction problems at the end of life, they often have limited access to palliative care. Both the homeless and healthcare providers experience a lot of barriers. Therefore, providing palliative care that fits the needs and concerns of the homeless is a challenge to healthcare providers. This systematic review aims to summarize evidence about the concerns, palliative care needs and preferences of homeless people, as well as barriers and facilitators for delivering high quality palliative care.PubMed, Embase, PsycINFO, CINAHL and Web of Science were searched up to 10 May 2016. Included were studies about homeless people with a short life expectancy, their palliative care needs and the palliative care provided, that were conducted in Western countries. Data were independently extracted by two researchers using a predefined extraction form. Quality was assessed using a Critical Appraisal instrument. The systematic literature review was based on the PRISMA statement.Twenty-seven publications from 23 different studies met the inclusion criteria; 15 studies were qualitative and eight were quantitative. Concerns of the homeless often related to end-of-life care not being a priority, drug dependence hindering adequate care, limited insight into their condition and little support from family and relatives. Barriers and facilitators often concerned the attitude of healthcare professionals towards homeless people. A respectful approach and respect for dignity proved to be important in good quality palliative care.A patient-centred, flexible and low-threshold approach embodying awareness of the concerns of homeless people is needed so that appropriate palliative care can be provided timely. Training, education and experience of professionals can help to accomplish this.
Palliative care for homeless people: a systematic review of the concerns, care needs and preferences, and the barriers and facilitators for providing palliative care.
<h4>Background</h4>Homeless people often suffer from complex and chronic comorbidities, have high rates of morbidity and die at much younger ages than the general population. Due to a complex combination of physical, psychosocial and addiction problems at the end of life, they often have limited access to palliative care. Both the homeless and healthcare providers experience a lot of barriers. Therefore, providing palliative care that fits the needs and concerns of the homeless is a challenge to ...[more]
Project description:BackgroundDementia has become a major public health issue worldwide due to its rapidly increasing prevalence and an increasing number of dementia-related deaths in long-term care facilities. The aim of this study was to examine health professionals' experiences of potential barriers and facilitators in providing palliative care for people with severe dementia in long-term care facilities.MethodsThis was a qualitative descriptive study. The data were collected from four focus groups and 20 individual in-depth interviews with healthcare professionals from four Norwegian nursing homes. The data were analysed by thematic text analysis, as described by Braun and Clarke.ResultsThe major findings indicate that healthcare professionals experience a lack of continuity as the main barrier to facilitating palliative care. Time pressure and increased efficiency requirements especially affect the weakest and bedridden residents with dementia. The healthcare professionals feel conflicted between wanting to spend more time caring for each individual resident and feeling pressure to help everyone. Although resources are scarce, dying residents are always given priority by healthcare professionals, either by the hiring of extra personnel or the reorganization of tasks in a way that facilitates someone staying with the terminal resident. Advanced care planning was highlighted as a facilitator in providing palliative care, but the extensive use of temporary staff among nurses and doctors and the relocation between the sheltered and long-term wards threaten the continuity in planning and providing palliative care.ConclusionsThe findings indicate that healthcare professionals experienced several structural barriers that prevented the provision of palliative care to people with severe dementia in long-term care facilities. Increasing demands for economic rationality lead to a lack of continuity of care. Organizational changes, such as measures to increase the competence and the proportion of permanent employees and the prevention of burdensome end-of-life transitions, should be implemented to improve continuity and quality of care.
Project description:BackgroundPalliative care (PC) focuses on relieving pain and difficult symptoms rather than treating disease or delaying its progress. Palliative care views death as a natural process and allows patients to live the last phase of their existence in the best possible way, encouraging them to express their opinions and wishes for a good death. Interventions are advocated to control symptoms and distress and promote wellbeing and social functioning. A multidisciplinary approach to support patients receiving palliative care is encouraged.ObjectiveThe aims of this study were to investigate the facilitators and barriers to PC in people with kidney disease from a nursing perspective and to explore predictive factors associated with nurse-perceived facilitators and barriers to PC in people with kidney disease.DesignThis study is a survey that adopted a questionnaire created in 2021 with Delphi methology, which included 73 statements divided into 37 facilitators and 36 barriers to PC in patients with kidney disease, to be scored using a Likert scale.Participants and measurementsParticipants were obtained through the membership database of the European Dialysis and Transplant Nurses Association/European Renal Care Association (EDTNA/ERCA) of 2020. Inclusion criteria included being registered as a nurse, an EDTNA/ERCA member and understanding of the English language. The questionnaire was sent via email.ResultsThree profiles of respondents were found: the first group was characterized by the highest agreement percentages of facilitators and with an average value of 53.7% in barriers; the second was characterized by a lower endorsement of facilitators and similar agreement to the first group for barriers; the third group had a high probability (>80%) of items endorsing both barriers and facilitators. Predictive variables were significantly associated with "Years in nephrology" and "macro geographic area".ConclusionsThis study demonstrates variation in PC practice across Europe. Some professionals identified fewer barriers to PC and appeared more confident when dealing with difficult situations in a patient's care pathway, while others identified more barriers as obstacles to the implementation of adequate treatment. The number of years of nephrology experience and the geographical area of origin predicted how nurses would respond. This study was not registered.
Project description:BackgroundOver the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC). However, implementing a PPCT into an organisation is a challenge. The objective of this study was to identify barriers and facilitators reported by healthcare professionals (HCPs) in primary, secondary or tertiary care for implementing a newly initiated multidisciplinary PPCT to bridge the gap between hospital and home.MethodsThe Measurement Instrument for Determinants of Innovations (MIDI) was used to assess responses of 71 HCPs providing PPC to one or more of the 129 children included in a pilot study of a PPCT based at a university children's hospital. The MIDI (29 items) assessed barriers and facilitators to implementing the PPCT by using a 5-point scale (completely disagree to completely agree) and additional open-ended questions. Items to which ≥20% of participants responded with 'totally disagree/disagree' and ≥80% responded with 'agree/totally agree' were considered as barriers and facilitators, respectively. A general inductive approach was used for open-ended questions.ResultsReported barriers to implementing a PPCT were related to the HCP's own organisation (e.g., no working arrangements related to use of the intervention [PPCT] registered, other organisational changes such as merger going on). Reported facilitators were mainly related to the intervention (correctness, simplicity, observability and relevancy) and the user scale (positive outcome expectations, patient satisfaction) and only once to the organisation scale (information accessibility). Additionally, HCPs expressed the need for clarity about tasks of the PPCT and reported having made a transition from feeling threatened by the PPCT to satisfaction about the PPCT.ConclusionPositive experiences with the PPCT are a major facilitator for implementing a PPCT. Tailored organisational strategies such as working arrangements by management, concrete information about the PPCT itself and the type of support provided by the PPCT should be clearly communicated to involved HCPs to increase awareness about benefits of the PPCT and ensure a successful implementation. New PPCTs need protection and resources in their initial year to develop into experienced and qualified PPCTs.
Project description:BackgroundHepatitis C virus (HCV) is highly prevalent among homeless persons, yet barriers continue to impede HCV testing and treatment in this population. We studied the experiences of homeless individuals related to accessing HCV care to inform the design of a shelter-based HCV prevention and treatment program.MethodsHomeless shelter clients (10 women and 10 men) of a large shelter in San Francisco participated in gender segregated focus groups. Focus groups followed a semi-structured interview format, which assessed individual, program/system, and societal-level barriers and facilitators to universal HCV testing and linkage to HCV care. Focus group interviews were transcribed, coded, and analyzed using thematic analysis.ResultsWe identified key barriers to HCV testing and treatment at the individual level (limited knowledge and misconceptions about HCV infection, mistrust of health care providers, co-morbid conditions of substance use, psychiatric and chronic medical conditions), system level (limited advocacy for HCV services by shelter staff), and social level (stigma of homelessness). Individual, system, and social facilitators to HCV care described by participants included internal motivation, financial incentives, prior experiences with rapid HCV testing, and availability of affordable direct acting antiviral (DAA) treatment, respectively.ConclusionsInterrelated individual- and social-level factors were the predominant barriers affecting homeless persons' decisions to engage in HCV prevention and treatment. Integrated models of care for homeless persons at risk for or living with HCV address many of these factors, and should include interventions to improve patient knowledge of HCV and the availability of effective treatments.
Project description:PurposeThis study assessed factors affecting the provision of affirming-care best practices (ACBPs) for transgender individuals by primary care providers (PCPs) in a rural, southern state METHODS: We conducted a sequential explanatory mixed-methods study in 2020, including a statewide survey (phase 1) and interviews (phase 2). Surveyed PCPs (phase 1) included Medical Doctors/Doctors of Osteopathy (MDs/DOs), nurse practitioners, and 1 physician assistant. Interview participants (phase 2) included providers and staff in 6 practices throughout the state. We used an exploratory approach to data collection and performed content analysis to classify interview data into categories representing overarching themes RESULTS: Among surveyed PCPs who reported they had provided care to transgender patients (n = 35), the most common reason for providing gender-affirming medical services was "because of my ethical obligation to treat patients equally" (n = 27, 77%). The most common reason for not providing such services was because the PCPs "have not been trained/don't feel competent to provide these services" (n = 12, 34%). Interviews revealed the following themes: (1) willingness to provide "culturally competent care"; (2) continuum of accepting to affirming attitudes toward transgender individuals; (3) basic understanding of stigma and an awareness of its impact; (4) changes needed to provide "culturally competent care"; and (5) preferred clinical support strategies.ConclusionTraining and education to provide ACBPs are warranted and would meet the needs of patients and providers. Facilitating telemedicine visits for transgender patients with gender-affirming care experts was a favorable implementation strategy for clinical support and is recommended to address access to affirming care.
Project description:BackgroundTelehealth is increasingly used in palliative care and its application is seen as one possible solution to improve access to palliative care services, thereby providing additional support for patients with advanced cancer. By completing a systematic review of the literature this research identifies the barriers and facilitators of telehealth adoption by patients with advanced cancer to determine the type of healthcare services needed to meet their needs.MethodsA systematic review of the literature was conducted on CINAHL, MEDLINE, EMBASE, PsycINFO, PsycArticles, the Cochrane Library, Scopus, Web of Science, ScienceDirect, IEEE Xplore as well as grey literature to identify the barriers and facilitators of adopting telehealth by patients with advanced cancer in palliative care. The search was registered on PROSPERO (CRD42023446460) and focused on articles published between March 2021 and August 2023, after the first wave of COVID-19.ResultsOverall, nine papers were identified and included in the review. Patients with advanced cancer were found to be willing to use telehealth reporting a high satisfaction. Patients with advanced cancer receiving palliative care experienced barriers such as software and hardware failures as well as technical issues. Complicating this even further was a language barrier, as well as aging and medical issues. Older patients found the use of telehealth difficult and reported needing additional support around its use, yet telehealth was broadly found to be accepted. Telehealth facilitated a sense of independence, control, comfort and security to patients. Operating in the background while remaining available it promoted a sense of empowerment for patients.ConclusionsIdentification of the barriers and facilitators of telehealth use by patients with advanced cancer in palliative care, contributes to condition specific benchmarks for telehealth use and further informs national treatment guidelines around patients with advanced cancer needs to ensure sustainability and relevance now and in the future.
Project description:BackgroundCommunity pharmacies are easily accessible for self-care advice. Guidelines for providing self-care advice were introduced in several countries, including the Netherlands in the 1990s. Previous studies have indicated room for improvement in self-care advice in daily pharmacy practice.AimTo identify barriers and facilitators for providing self-care advice.MethodSemi-structured interviews were conducted face-to-face or online with pharmacists and pharmacy assistants using a topic guide based on the Theoretical Domains Framework. The interviews were audio-recorded and transcribed verbatim. The transcripts were deductively analysed to identify barriers and facilitators for self-care counselling. COREQ guidelines were followed.ResultsIn total, 13 pharmacists and 12 pharmacy assistants were interviewed to reach data saturation. In general, most themes addressed by pharmacists and pharmacy assistants belonged to similar domains. The following domains were frequently mentioned: environmental context and resources (e.g. priority for prescription drugs, privacy, collaboration with general practitioners, access to patients' records), intentions (providing reliable advice), skills (communication, decision-making), knowledge (ready guideline knowledge), beliefs about consequences (patient safety), social influences (patient awareness of pharmacist role), reinforcement (lack of reimbursement for relatively time-consuming advice).ConclusionThis study identifies barriers and facilitators for evidence-based self-care advice. Pharmacists should first support pharmacy assistants by helping them keep their knowledge and skills up to date and creating suitable pharmacy preconditions to facilitate improvements in self-care counselling. Second, collaboration with general practitioners regarding minor ailments should be improved.
Project description:Palliative care has potential to improve quality of life and goal-concordant care for patients with adult congenital heart disease (ACHD). However, it is rarely employed prior to critical illness because the best methods for implementation are not well-defined. We qualitatively evaluated ACHD patients' understanding of and opinions regarding palliative care and advance care planning (ACP) to better define the needs of this population. We conducted a thematic analysis of 25 semistructured interviews with patients with ACHD in which we assessed participants' perspectives on the need for, and barriers and facilitators to, the use of palliative care and ACP. In a group of participants with ACHD (mean age 38, 48% male) classified as simple (24%), moderate (32%), or complex (44%), we identified 4 major themes: (1) using knowledge to combat future uncertainties; (2) unfamiliarity with and limited exposure to palliative care and ACP; (3) facilitators and barriers to engaging in palliative care and ACP; and (4) importance of timing and presentation of ACP discussions. In conclusion, participants expressed a desire for knowledge about ACHD progression and treatment. They supported routine incorporation of palliative care and ACP and identified related facilitators and barriers to doing so. Importantly, timing and format of these discussions must be individualized using shared decision-making between clinicians, patients, and their families.
Project description:PurposeThis study aimed to describe nurses' perceived needs and barriers to pediatric palliative care (PPC).MethodsMixed methods with an embedded design were applied. An online survey was conducted for nurses who participated in the End-of-Life Nursing Education Consortium- Pediatric Palliative Care (ELNEC-PPC) train-the-trainer program, of whom 63 responded. Quantitative data were collected with a survey questionnaire developed through the Delphi method. The 47 items for needs and 15 items for barriers to PPC were analyzed with descriptive statistics. Qualitative data were collected through open- ended questions and analyzed with topic modeling techniques.ResultsThe mean scores of most subdomains of the PPC needs were 3.5 or higher out of 4, and those of PPC barriers ranged from 3.22 to 3.56, indicating the items in the questionnaire developed in this study properly reflect each factor. The needs for PPC were divided into 4 categories "children and adolescents," "families," "PPC management system," and "community-based PPC." Meanwhile, PPC barriers were divided into 3 categories "healthcare delivery system," "healthcare provider," and "client." The keywords derived from the topic modeling were perception, palliative, children, and education for necessities and lack, perception, medical care, professional care providers, service, and system for barriers to PPC.ConclusionIn this study, by using mixed-methods, items of nurses' perceived needs and barriers to PPC were identified, categorized, and weighted, and their meanings were explored. For the stable establishment of PPC, the priority should be given to improving perceptions of PPC, establishing an appropriate system, and training professional care providers.
Project description:Neonatal nurses in mainland China encounter various challenges when it comes to delivering palliative care to neonates. The aim of this study was to determine the barriers and facilitators of neonatal nurses' attitudes to palliative care for neonates in mainland China. A simplified Chinese version of the Neonatal Palliative Care Attitude Scale was piloted, administered, and analyzed using survey methods. Nurses in neonatal intensive care units in mainland China regardless of experience in the field were invited to take part in. Over a five-month period in 2019, we surveyed neonatal nurses from 40 hospitals in five provinces of China. The response rate was 92.5% (N = 550). This study identified eight facilitators and four barriers to neonatal palliative care implementation. In terms of nurses' attitudes on providing palliative care, younger and older nurses were more positive, whereas middle-aged nurses were less so. Nurses' emotional wellbeing was rarely impacted by neonatal death. They considered neonatal palliative care, particularly pain management, to be just as important as curative treatment. Parents were invited to participate in decision-making by nurses. Nurses reported having access to professional counseling and talking about their concerns with other healthcare professionals. The following barriers to neonatal palliative care were identified in this study that were not observed in the original English version scale research in 2009: a lack of clinicians, time, clinical skills, systematic education, neonatal palliative care experience, and social acceptance. Future research is required to investigate each barrier in order to improve the implementation of neonatal palliative care in mainland China.
