The impact of social support on benefit finding among patients with advanced lung cancer and their caregivers: based on actor-partner interdependence mediation model.

PURPOSE: Advanced lung cancer and its treatment serve as a sudden stressful event that profoundly impacts the psychological experience of both the patients and their primary caregiver. This study used dyadic analyses to explore the dyadic effects of social support on benefit finding and whether hope level mediates the patient-caregiver dyads in advanced lung cancer. METHODS: Two hundred ninety-five pairs of patients with advanced lung cancer and primary caregivers completed the Social Support Rating Scale (SSRS), the Herth Hope Index (HHI), and the Benefit Finding Scale (BFS). Dyadic analyses were conducted using structural equation modelling based on the actor-partner interdependence mediation model. RESULTS: The results indicated that for both patients (B = 0.259, 95% CI = 0.135-0.423, P < 0.001) and their primary caregivers (B = 0.596, 95% CI = 0.403-0.838, P < 0.001), hope level mediated the actor effect of social support on benefit finding; social support was positively associated with hope level and further enhanced benefit finding. Regarding partner effects (B = 0.242, 95% CI = 0.119-0.404, P < 0.001), primary caregivers' social support significantly indirectly affected patients' benefit finding through patients' hope level. CONCLUSION: There is an interaction between social support, hope level, and benefit finding in patients with advanced lung cancer and their primary caregivers. Healthcare professionals ought to be vigilant in recognizing patients and caregivers who are vulnerable, have limited social support, and possess diminished hope levels. At the same time, nurses should provide timely psychological support and counseling to patients and their caregivers, encourage them to actively participate in social activities, and inspire their confidence and hope in life, thus improving their benefit findings.

The Psychological Symptoms and Their Relationship to the Quality of Life Among Dementia Patients Caregivers.

The study aims to identify psychological symptoms (depression and anxiety) and their relationship to the quality of life among dementia patients' caregivers, and whether there are differences in the level of each of them due to the gender variable. The study follows the correlational approach, with a sample of 174 dementia patients' caregivers. To pursue the analysis, the study uses 3 measurement tools: anxiety, depression, and quality of life. The results show that the level of depression, anxiety, and quality of life among dementia patients' caregivers is moderate. It also finds that there is a positive relationship between anxiety and depression, and there is a negative relationship between quality of life and anxiety and depression. There are no differences in the level of depression and anxiety due to gender, as the study finds female caregivers to have a higher level of quality of life.

"Like not having an arm": a qualitative study of the impact of visitor restrictions on cancer care during the COVID-19 pandemic.

PURPOSE: Visitor restriction policies to prevent the spread of COVID-19 among patients and clinicians were widespread during the pandemic, resulting in the exclusion of caregivers at key points of cancer care and treatment decision-making. The aim of this study was to explore how visitor restrictions impacted cancer treatment decision-making and care from patient and physician perspectives. METHODS: Sixty-seven interviews, including 48 cancer patients and 19 cancer and palliative care physicians from four academic cancer centers in the USA between August 2020 and July 2021. RESULTS: Visitor restrictions that prevented caregivers from participating in clinic appointments and perioperative hospital care created challenges in cancer care that spanned three domains: practical, social, and informational. We identified eight themes that characterized challenges within the three domains across all three groups, and that these challenges had negative emotional and psychological consequences for both groups. Physicians perceived that patients' negative experiences due to lack of support through the physical presence of caregivers may have worsened patient outcomes. CONCLUSIONS: Our data demonstrate the tripartite structure of the therapeutic relationship in cancer care with caregivers providing critical support in the decision-making and care process to both patients and physicians. Caregiver absences led to practical, psychosocial, and informational burdens on both groups, and likely increased the risk of burnout among physicians. Our findings suggest that the quality of cancer care can be enhanced by engaging caregivers and promoting their physical presence during clinical encounters.

Exploring the knowledge and skills for effective family caregiving in elderly home care: a qualitative study.

BACKGROUND: Family caregivers play a crucial role in providing physical, emotional, and social support to the elderly, allowing them to maintain their independence and stay in their preferred living environment. However, family caregivers face numerous challenges and require specific knowledge and skills to provide effective care. Therefore, understanding the knowledge and skills required for effective family caregiving in elderly home care is vital to support both the caregivers and the elderly recipients. METHODS: The research was carried out in Mekelle City, Ethiopia, utilizing the phenomenology study design and purposive sampling technique. A total of twenty-two in-depth interviews were conducted. Individuals with experience in providing care for elderly people in their homes were targeted. Data was gathered through the use of an open-ended guide, transcribed word-for-word, inputted into ATLAS.ti8 software, and translated. Codes and themes were then extracted from the transcribed data, and a thematic analysis was performed. To minimize personal biases, the collected data were coded independently by the data collection assistants and the PI. The analysis was carried out by authors who were not involved in the data collection process. The interviews were conducted in a quiet place. RESULTS: A total of 22 in-depth interviews were conducted as part of this research. The results indicated that although the participants had knowledge about common health problems experienced by older people, they were uninformed about how to manage these conditions at home and were unaware of specialized healthcare resources for the elderly. Furthermore, they had limited knowledge about suitable exercise routines, strategies to prevent falls, and home healthcare practices for older individuals. On the other hand, they exhibited a solid comprehension and awareness of abusive behaviors specifically directed at older adults. CONCLUSION: The results emphasized the importance of enhancing education and training for family caregivers in handling elderly health issues, raising awareness about specialized healthcare services catered to the elderly, improving understanding of activities of daily living (ADLs) and fall prevention, and offering inclusive training in healthcare tasks related to elder care. RECOMMENDATION: Participants should receive comprehensive education and training programs to enhance their knowledge and skills in managing these conditions. Efforts should also be made to raise awareness about the availability of geriatric hospitals or specialized nurses for the elderly. Participants need to be educated about suitable exercise routines for the elderly and fall prevention strategies. Healthcare skills training is also necessary for participants, focusing on activities such as wound dressing, vital sign monitoring, and establishing a specific schedule for changing positions.

The Olera.care Digital Caregiving Assistance Platform for Dementia Caregivers: Preliminary Evaluation Study.

BACKGROUND: The increasing prevalence of Alzheimer disease and Alzheimer disease-related dementia in the United States has amplified the health care burden and caregiving challenges, especially for caregivers of people living with dementia. A web-based care planning tool, Olera.care, was developed to aid caregivers in managing common challenges associated with dementia care. OBJECTIVE: This study aims to preliminarily evaluate the quality and usability of the Olera.care platform and assess the preferences of using the technology and interests in learning about different older adult care services among caregivers. METHODS: For interview 1, we aim to understand caregiving needs and let the participants start engaging with the platform. After they engage with the platform, we schedule the second interview and let the participants complete the Mobile Application Rating Scale. The survey also included sociodemographic characteristics, caregiving experiences, communication preferences in technology adoption, and older adult care service use and interests. Descriptive statistics were used to describe the quality and usability of the platform and characteristics of the participants. We conducted 2-sample 2-tailed t tests to examine the differences in the Mobile Application Rating Scale evaluation scores by caregiver characteristics. RESULTS: Overall, 30 adult caregivers in Texas completed the evaluation. The majority were aged ≥50 years (25/30, 83%), women (23/30, 77%), White (25/30, 83%), and financially stable (20/30, 67%). The Olera.care platform evaluation showed high satisfaction, with an overall mean rating of 4.57 (SD 0.57) of 5, and scored well in engagement (mean 4.10, SD 0.61), functionality (mean 4.46, SD 0.44), aesthetics (mean 4.58, SD 0.53), and information quality (mean 4.76, SD 0.44) consistently across all participants. A statistically significant difference (P=.02) was observed in functionality evaluation scores by duration of caregiving, with caregivers dedicating more hours to care rating it higher than those providing less care (mean 4.6, SD 0.4 vs mean 4.2, SD 0.5). In addition, caregivers with less caregiving experience reported significantly higher evaluation scores for aesthetics (P=.04) and information quality (P=.03) compared to those with longer years of caregiving. All participants expressed a willingness to recommend the app to others, and 90% (27/30) rated the app overall positively. Most of the participants (21/30, 70%) favored anonymous interactions before receiving personalized feedback and preferred computer browsers over mobile apps. Medical home health services were the most used, with a diverse range of services being used. Caregiver support groups, medical providers, memory care, meal services, and adult day care were among the most desired services for future exploration. CONCLUSIONS: The Olera.care web-based platform is a practical, engaging, easy-to-use, visually appealing, and informative tool for dementia caregivers. Future development and research are essential to enhance the platform and comprehensively evaluate it among a broader population.

Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers.

BACKGROUND: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill-equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers. OBJECTIVE: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO-pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting. METHODS: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including "think-aloud" interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3). RESULTS: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small "snackable" sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface. CONCLUSIONS: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care.

Goals of Care Among Patients With Advanced Cancer and Their Family Caregivers in the Last Years of Life.

Importance: Understanding goals of care for terminally ill patients at the end of life is crucial to ensure that patients receive care consistent with their preferences. Objectives: To investigate the patterns of goals of care among patient-caregiver dyads over the last years of the patient's life and the associations of the goals of care with patient-caregiver characteristics. Design, Setting, and Participants: This prospective cohort study of 210 patient-caregiver dyads involved surveys every 3 months from July 8, 2016, until the patient's death or February 28, 2022. Data from the last 2 years of the patients' lives were analyzed. Dyads, which comprised patients with stage IV solid cancer and their caregivers, were recruited from outpatient clinics at 2 major cancer centers in Singapore. Main Outcomes and Measures: Goals of care were examined via the tradeoffs between life extension and symptom management and between life extension and cost containment. The actor-partner interdependence framework was implemented using mixed-effects linear regressions. Results: This study included 210 dyads (patients: mean [SD] age, 62.6 [10.5] years; 108 men [51.4%]; caregivers: mean [SD] age, 49.4 [14.6] years; 132 women [62.9%]). On average, 34% of patients (264 of 780 observations; range, 23%-42%) and 29% of caregivers (225 of 780 observations; range, 20%-43%) prioritized symptom management over life extension, whereas 24% of patients (190 of 780 observations; range, 18%-32%) and 19% of caregivers (148 of 780 observations; range, 8%-26%) prioritized life extension. Between cost containment and life extension, on average, 28% of patients (220 of 777 observations; range, 22%-38%) and 17% of caregivers (137 of 780 observations; range, 10%-25%) prioritized cost containment, whereas 26% of patients (199 of 777 observations; range, 18%-34%) and 35% of caregivers (271 of 780 observations; range, 25%-45%) prioritized life extension. Goals of care did not change as patients approached death. Patients prioritized symptom management if they experienced higher symptom burden (average marginal effect [SE], 0.04 [0.01]), worse spiritual well-being (average marginal effect [SE], -0.04 [0.01]), and accurate (vs inaccurate) prognostic awareness (average marginal effect [SE], 0.40 [0.18]) and if their caregivers reported accurate prognostic awareness (average marginal effect [SE], 0.53 [0.18]), lower impact of caregiving on finances (average marginal effect [SE], -0.28 [0.08]), and poorer caregiving self-esteem (average marginal effect [SE], -0.48 [0.16]). Compared with patients, caregivers expressed lower preferences for cost containment (average marginal effect [SE], -0.63 [0.09]). Patients prioritized cost containment if they were older (average marginal effect [SE], 0.03 [0.01]), had higher symptom burden (average marginal effect [SE], 0.04 [0.01]), had poorer spiritual well-being (average marginal effect [SE], -0.04 [0.01]), and their caregivers reported poorer caregiving self-esteem (average marginal effect [SE], -0.51 [0.16]) and more family support (average marginal effect [SE], -0.30 [0.14]). Conclusions and Relevance: In this cohort study of patient-caregiver dyads, findings suggested the importance of interventions aimed at reducing discordance in goals of care between patients and caregivers and helping them develop realistic expectations to avoid costly, futile treatments.

Division of Responsibility in Child Feeding and Eating Competence: A Cross-Sectional Study in a Sample of Caregivers of Brazilian Children with Celiac Disease.

The objective of this cross-sectional study was to assess eating competence (EC) and the adherence to the division of responsibility in child feeding (sDOR) of Brazilian caregivers of children with celiac disease (CD). It also examined the association between EC and sDOR, children's adherence to a gluten-free diet, and sociodemographic data. This study administered a survey set that included sociodemographic data, health-related data, eating habits, and the instruments ecSI2.0TMBR and sDOR.2-6yTM BR, validated for a Brazilian population. The sample comprised 50 caregivers of children with CD (between 24 and 72 months of age). The participants following a gluten-free diet (GFD) presented higher scores for all EC domains and the total EC. The total EC scores were higher for the participants over 40 y/o, frequently having meals as a family, with their children consuming more than three servings of fruit and at least one serving of vegetables daily and complying with a GFD. Different from the EC, the sDOR.2-6yTM scores did not differ between the participants complying with a GFD. The sDOR.2-6yTM mealtime structure domain scores were significantly associated with the EC eating attitude, food acceptance, contextual skills, and total. These findings support the need for greater attention to exploring the division of responsibility in feeding and EC in pediatric celiac disease, potentially enhancing intervention strategies for patients and their families.

Experiences of family caregivers in dealing with cases of advanced breast cancer: a qualitative study of the sociocultural context in Punjab, Pakistan.

BACKGROUND: Patients with advanced breast cancer require consistent help and support from family caregivers. These caregivers often endure financial burdens and psychological stress, with their experiences significantly influenced by sociocultural factors. This study aims to explore the experiences of family caregivers of advanced breast cancer patients in Punjab province, Pakistan. METHODS: Data was collected through in-depth interviews with fifteen family caregivers of advanced breast cancer patients in three major cities of Punjab, Pakistan. Caregivers, who had been in close contact with the patient for the last two years, were purposively sampled from five major hospitals. The data was analyzed using thematic analysis. RESULTS: The study revealed that the experiences of family caregivers are deeply rooted in the sociocultural context. Key themes identified include social responsibility and cultural reciprocity norms; limited awareness and mobility options for caregivers; financial responsibility and strain; impacts of beauty myths and shyness on caregiving attitudes and decisions; the stressful and emotional nature of caregiving; treatment perspectives influenced by social groups; challenges in consulting male physicians and associated stigma; the role of religious beliefs in caregiving; and stress management, with religion often being a coping mechanism. These factors can contribute to delayed treatment decisions for patients. CONCLUSIONS: Family caregivers are crucial in facilitating timely treatment decisions for advanced breast cancer patients in the Pakistani context. To minimize treatment delays and alleviate caregiver stress, addressing sociocultural barriers in care-seeking is essential. A tailored approach, considering sociocultural and religious factors, is imperative for the management and early diagnosis of breast cancer, necessitating appropriate policymaking and implementation.

Spouses of patients treated for colon cancer: identification of key caregiver skills using the Delphi method.

PURPOSE: Spouses are often the front-line caregivers for colon cancer patients. Providing this support requires a particular set of coping skills. Our objective was to identify key skills that healthcare and medico-social sector professionals could assess in routine practice that would allow them to propose appropriate support to spouses who are accompanying colon cancer patients in their care pathway. METHODS: An online two-round Delphi study was conducted among French colon cancer patients, spouses and professionals. The content of the Delphi study was developed from a previously published qualitative study. RESULTS: In the first round of the study, 63% of the participants were professionals (n = 40), 19% spouses (n = 12) and 17% patients (n = 11). In the second round, they were respectively 55% (n = 22), 22% (n = 9) and 22% (n = 9). Twenty-seven of the 75 proposed skills were consensually identified as key skills. Nine were related to emotional and psychological well-being, six to social relations, four to organisation, five to health and three to domestic domains. The three most consensual skills (≥ 90% agreement) for spouses were (1) helping the tired patient in everyday life, (2) stimulating the patient to prevent him/her from giving up and (3) limiting one's amount of personal time to care for the patient. CONCLUSION: The study identified the key skills needed by spouses of patients being treated for colon cancer. Better awareness of these skills among professionals would enable them to offer tailored support to help patients and spouses maintain their physical and emotional well-being.

Benefits of Chinese family caregivers of patients with urostomy: a qualitative study.

BACKGROUND: Family caregivers, also known as informal caregivers, are critical for the home care of patients with urostomy. The present study aimed to investigate the benefits of family caregivers in China while taking care of patients with urostomy from a positive perspective. METHODS: A qualitative research design was adopted, with a thematic analysis. The qualitative research software NVivo was used for data analysis. Twenty-two family caregivers of urostomy patients participated in an in-depth interview for 60-90 min. A qualitative analysis was performed using a thematic approach in accordance with the six-stage thematic analysis process reported by Braun and Clarke (2006). RESULTS: The following four benefits were identified: mastering knowledge and skills, promoting self-growth, establishing close family ties, and changing the way of life. Among these four themes, 11 sub-themes were constructed by coders. CONCLUSIONS: This study provides new insights into intervention measures for family caregivers of patients with urostomy, which could play an important role in developing the overall model of family-centered nursing.

Who really decides? Feeding decisions 'made' by caregivers of children with cerebral palsy.

BACKGROUND:  There are no definitive guidelines for clinical decisions for children with cerebral palsy (CP) requiring enteral feeds. Traditionally, medical doctors made enteral feeding decisions, while patients were essentially treated passively within a paternalistic 'doctor knows best' approach. Although a more collaborative approach to decision-making has been promoted globally as the favoured model among healthcare professionals, little is known about how these decisions are currently made practically. OBJECTIVES:  This study aimed to identify the significant individuals, factors and views involved in the enteral feeding decision-making process for caregivers of children with CP within the South African public healthcare sector. METHOD:  A single-case research design was used in this qualitative explorative study. Data were collected using semi-structured interviews and analysed using reflexive thematic analysis. RESULTS:  Four primary individuals were identified by the caregivers in the decision-making process: doctors, speech therapists, caregivers' families and God. Four factors were identified as extrinsically motivating: (1) physiological factors, (2) nutritional factors, (3) financial factors and (4) environmental factors. Two views were identified as intrinsically motivating: personal beliefs regarding enteral feeding tubes, and feelings of fear and isolation. CONCLUSION:  Enteral feeding decision-making within the South African public healthcare sector is currently still dominated by a paternalistic approach, endorsed by a lack of caregiver knowledge, distinct patient-healthcare provider power imbalances and prescriptive multidisciplinary healthcare dialogues.Contribution: This study has implications for clinical practice, curriculum development at higher education training facilities, and institutional policy changes and development, thereby contributing to the current knowledge and clinical gap(s) in the area.

Clinician and Family Caregiver Perspectives on Deprescribing Chronic Disease Medications in Older Nursing Home Residents Near the End of Life.

INTRODUCTION: Nursing home (NH) residents with limited life expectancy (LLE) who are intensely treated for hyperlipidemia, hypertension, or diabetes may benefit from deprescribing. OBJECTIVE: This study sought to describe NH clinician and family caregiver perspectives on key influences on deprescribing decisions for chronic disease medications in NH residents near the end of life. METHODS: We recruited family caregivers of veterans who recently died in a Veterans Affairs (VA) NH, known as community living centers (CLCs), and CLC healthcare clinicians (physicians, nurse practitioners, physician assistants, pharmacists, registered nurses). Respondents completed semi-structured interviews about their experiences with deprescribing statin, antihypertensive, and antidiabetic medications for residents near end of life. We conducted thematic analysis of interview transcripts to identify key themes regarding influences on deprescribing decisions. RESULTS: Thirteen family caregivers and 13 clinicians completed interviews. Key themes included (1) clinicians and caregivers both prefer to minimize drug burden; (2) clinical factors strongly influence deprescribing of chronic disease medications, with differences in how clinicians and caregivers weigh specific factors; (3) caregivers trust and rely on clinicians to make deprescribing decisions; (4) clinicians perceive caregiver involvement and buy-in as essential to deprescribing decisions, which requires time and effort to obtain; and (5) clinicians perceive conflicting care from other clinicians as a barrier to deprescribing. CONCLUSIONS: Findings suggest a need for efforts to encourage communication with and education for family caregivers of residents with LLE about deprescribing, and to foster better collaboration among clinicians in CLC and non-CLC settings.

Cognition and health-related quality of life in long-term survivors of high-grade glioma: an interactive perspective from patient and caregiver.

BACKGROUND: The health-related quality of life (HRQoL) and cognition are important indicators for the quality of survival in patients with high-grade glioma (HGG). However, data on long-term survivors and their caregivers are scarce. We aim to investigate the interaction between cognition and HRQoL in long-term survivors, their caregivers' evaluations, and the effect on caregiver strain and burden. METHODS: 21 long-term HGG (8 WHO grade III and 13 WHO grade IV) survivors (survival ≥ 5 years) and 15 caregivers were included. Cognition (verbal memory, attention, executive functioning, and language), HRQoL, anxiety and depression, caregiver strain, and caregiver burden were assessed with standardized measures. Questionnaires were completed by patients and/or their caregivers. RESULTS: Mean survival was 12 years (grade III) and 8 years (grade IV). Cognition was significantly impaired with a large individual variety. Patients' general HRQoL was not impaired but all functioning scales were deviant. Patient-proxy agreement was found in most HRQoL subscales. Three patients (14%) showed indications of anxiety or depression. One-third of the caregivers reported a high caregiver strain or a high burden. Test scores for attention, executive functioning, language, and/or verbal memory were correlated with perceived global health status, cognitive functioning, and/or communication deficits. Caregiver burden was not related to cognitive deficits. CONCLUSIONS: In long-term HGG survivors maintained HRQoL seems possible even when cognition is impaired in a large variety at the individual level. A tailored approach is therefore recommended to investigate the cognitive impairments and HRQoL in patients and the need for patient and caregiver support.

[Care assistants at the international level: a narrative review]. / Gli operatori di supporto a livello internazionale: una revisione narrativa.

. Care assistants at the international level: a narrative review. INTRODUCTION: At the international level, the role of care assistants, their competencies and scope of their professional practice has been debated for many years. Periodically updating the state of the art regarding the different training pathways, expected competencies, and responsibilities of care assistants at the international level is crucial for monitoring the evolution of these professional profiles. OBJECTIVE: To map the available classifications of care assistants at the international level, by describing (a) where these figures receive training, with which pathways, and for which competencies, and (b) where they can work and with what level of professional autonomy/interdependence with respect to other healthcare professions. METHOD: A narrative review of the literature was conducted by examining documents produced by the World Health Organization and the European Union; and that of three reference countries, the United Kingdom, Canada, and the United States of America. RESULTS: Fourteen documents were selected. Numerous care assistant profiles are described in available classifications, totaling 32 different profiles; these individuals may receive training in upper secondary school or colleges to perform a range of competencies. They may be supervised in their practice not only by nurses. In some countries, compulsory registration is required. DISCUSSION: The results show an important heterogeneity in care assistant figures internationally.

Home symptom management training programme: carer evaluation.

OBJECTIVES: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers' confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines. METHODS: Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview. RESULTS: Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role; (2) the importance of a layered approach to support; and (3) avoiding perceived unnecessary contact with nurses. CONCLUSION: The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home.

Advance care planning as perceived by marginalized populations: Willing to engage and facing obstacles.

BACKGROUND: Health disparities exist in end-of-life (EOL) care. Individuals and communities that are marginalized due to their race, ethnicity, income, geographic location, language, or cultural background experience systemic barriers to access and receive lower quality EOL care. Advance care planning (ACP) prepares patients and their caregivers for EOL decision-making for the purpose of promoting high-quality EOL care. Low engagement in ACP among marginalized populations is thought to have contributed to disparity in EOL care. To advance health equity and deliver care that aligns with the goals and values of each individual, there is a need to improve ACP for marginalized populations. AIM: To describe how patients from marginalized populations experience and perceive ACP. METHODS: We used an interpretive phenomenological approach with semi-structured qualitative interviews. Participants were recruited from four primary care clinics and one nursing home in a US Pacific Northwest city. Thirty patients from marginalized populations with serious illness participated in individual interviews between January and December 2021. Participants were asked to describe their experiences and perceptions about ACP during the interviews. RESULTS: The mean age of 30 participants was 69.5; 19 (63%) were women; 12 (40%) identified as Asian/Pacific Islanders, 10 (33%) as Black; and 9 (30%) were non-native English speakers. Our three key findings were: 1) patients from marginalized populations are willing to engage in ACP; 2) there were multiple obstacles to engaging in ACP; and 3) meaningful ACP conversations could happen when clinicians listen. Although participants from marginalized populations were willing to engage in ACP, a fragmented and restrictive healthcare system and clinicians' biased behaviors or lack of interest in knowing their patients were obstacles. Participants who felt their clinicians took time and listened were encouraged to engage in ACP. CONCLUSION: Patients from marginalized populations are willing to engage in ACP conversations despite a common belief otherwise. However, obstacles to meaningful ACP conversations with healthcare providers exist. Clinicians need to be aware of these obstacles and listen to build trust and engage marginalized patients in mutually meaningful ACP conversations.

Priorities and barriers for ageing well; results from stakeholder workshops in rural and urban Rwanda.

BACKGROUND: The National Older Person's Policy of 2021 in Rwanda highlights the need for social protection of older populations. However, there is a lack of local knowledge regarding the priorities and challenges to healthy aging faced by older people and their caregivers. OBJECTIVES: This study aimed to identify and compare the needs and priorities of older people and other stakeholders involved in caring for them in rural and urban areas of Rwanda. METHODS: The study was conducted in two locations, Kigali (urban) and Burera district (rural). Each site hosted two separate one-day workshops with older people (≥60 years) and stakeholders (all ages). Discussions were held in plenary and roundtable-groups to generate a list of the top 4 prioritized responses on areas of importance, priorities/enablers to be addressed, and obstacles to living a healthy and active life for older people. The research team identified similarities between stakeholder and older people's responses in each area and a socio-ecological model was used to categorize findings. RESULTS: There were substantial differences in responses between rural and urban areas and between older people and stakeholders. For each question posed, in each rural or urban area, there was only agreement between stakeholders and older people for a maximum of one response. Whereas, when comparing responses from the same participant groups in urban or rural settings, there was a maximum agreement of two responses, with two questions having no agreement in responses at all. Responses across all discussion-areas were mostly categorized within the Societal level, with Individual, Relationship, and Environment featuring less frequently. CONCLUSION: This study highlights the need for contextually curated interventions to address the concerns of older adults and their caregivers in rural and urban settings. An inclusive and multidimensional approach is needed to conquer the barriers that impede healthy aging, with input from various stakeholders.