Patient and Caregiver Perceptions of Animal Assisted Activity in Orthodontics.
Ontology highlight
ABSTRACT:
SUBMITTER: Cass K
PROVIDER: S-EPMC9312150 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:ContextPrognostic information is considered important for advanced cancer patients and primary informal caregivers to prepare for the end of life. Little is known about discordance in patients' and caregivers' prognostic information preferences and prognostic perceptions, while such discordance complicates adaptive dyadic coping, clinical interactions and care plans.ObjectivesTo investigate the extent of patient-caregiver discordance in prognostic information preferences and perceptions, and the factors associated with discordant prognostic perceptions.MethodsWe conducted secondary analyses of a cross-sectional study (PROSPECT, 2019-2021). Advanced cancer patients (median overall survival ≤12 months) from seven Dutch hospitals and caregivers completed structured surveys (n = 412 dyads).ResultsSeven percent of patient-caregiver dyads had discordant information preferences regarding the likelihood of cure; 24%-25% had discordant information preferences regarding mortality risk (5/2/1 year). Seventeen percent of dyads had discordant perceptions of the likelihood of cure; 12%-25% had discordant perceptions of mortality risk (5/2/1 year). Dyads with discordant prognostic information preferences (P < 0.05) and dyads in which patients reported better physical functioning (P < 0.01) were significantly more likely to perceive the one-year mortality risk discordantly.ConclusionPhysicians should be sensitive to discordant prognostic information preferences and prognostic perceptions among patient-caregiver dyads in advanced cancer care.
| S-EPMC10285690 | biostudies-literature
Project description: Not available
| S-EPMC10590739 | biostudies-literature
Project description:BackgroundAlthough the number of lymphoma survivors has increased, the needs and research priorities of survivors and their caregivers rarely are examined and addressed. Determining the needs and priorities for this population requires an assessment of the attitudes and experiences of patients and caregivers. The authors conducted a qualitative study with lymphoma survivors and their caregivers to determine care needs and research priorities.MethodsIn the first phase, 2 semistructured focus groups were conducted with 15 lymphoma survivors and their caregivers. In phase 2, a total of 19 individual semistructured telephone interviews were conducted with lymphoma survivors and their caregivers. In both phases, participants discussed cancer experiences and research priorities. All interviews were transcribed. MAXQDA software (version 18.0.8) was used for coding and identifying themes.ResultsThe majority of participants felt disconnected from their clinical care team due to a lack of communication. Focus group participants noted a lack of information regarding diagnoses, treatment, research, and survivorship care. Participants coped with fear through strong social support and fostering relationships with their clinical care teams. Some caregivers felt completely ignored by clinicians. Participants expressed interest in research, but had difficulty finding relevant studies. Several interviewees desired holistic and survivorship-oriented research and more studies regarding quality of life and mental health.ConclusionsThe results of the current study identified unmet needs in clinical care and patient-oriented research, including needs for a focus on quality of life after treatment, communication between patients and the scientific community, and emotional well-being. Health care professionals can use these data to provide care delivery, supportive services, and research that meets the needs of lymphoma survivors and their caregivers.
| S-EPMC6819209 | biostudies-literature
Project description:Background: The burden of relapsed/refractory childhood cancer takes an immense toll on ill children and their caregivers, jeopardizing quality of life. Animal-assisted interventions (AAIs) have shown promising benefits for children with chronic conditions and their families. Little is known about child and caregiver perspectives on AAI participation for children with advanced cancer. Objective: To explore perspectives of children with advanced cancer and their caregivers on experiences with AAIs. Design: Cross-sectional qualitative design. Setting/Subjects: Participants were children (n = 9) aged 5 to 17 years with relapsed or refractory cancer and their parents (n = 12) from one academic children's hospital in the southeastern United States. Participants completed approximately weekly 15-minute AAI sessions with a trained dog and handler during oncology clinic visits or hospitalizations for up to 12 weeks. Measures: Semistructured interviews were carried out after completion of each family's final AAI session to assess child and parent perceptions of AAIs. Qualitative content analysis identified themes. Results: Five themes emerged: (1) positive aspects, (2) negative aspects, (3) preferred changes, (4) pet ownership, and (5) value of the study. Twenty (95%) participants shared positive aspects of AAIs. The only negative aspect reported was too little time with the dog. Conclusion: Children with advanced cancer and their parents perceive AAIs as desirable with few requested changes. Further studies are needed to fully evaluate impact of AAIs. ClinicalTrials.gov Identifier: NCT03765099.
| S-EPMC8675225 | biostudies-literature
Project description:ObjectivesTo describe the content of reviews submitted on Yelp that pertain to nursing home (NH) physicians.DesignRetrospective qualitative study.SettingNHs in the United States reviewed on Yelp from 2009 to 2018 with reviews that discussed NH physicians.ParticipantsPhysicians in 375 NHs in 31 states.MeasurementsContent analysis was performed to detect recurrent themes and divergent ideas about NH physicians perceived by reviewers.ResultsAverage rating among NHs with physician reviews was 2.0 (standard deviation = 1.5; range = 1-5). The major themes from content analysis of reviews that discussed physicians were perceived attitudes of clinicians toward patients and caregivers, physician communication with patients or caregivers, and perceived clinical expertise of the physicians.ConclusionUnsolicited online reviews of NHs that comment on patient and caregiver perceptions of physician care represent a small but growing number of online comments about NHs. These reviews contain important information about aspects of physician care valued by NH patients and caregivers. However, the sample of comments about physicians represents a small proportion of online reviews and is not representative of all NHs. As online reviews grow in number and become more representative, these data could be used by physicians to improve perceptions of their care by NH patients and their families, and by NHs to inform expectations of their medical director and attending physicians.
| S-EPMC8297568 | biostudies-literature
Project description:Background Gaucher disease is a rare, autosomal recessive genetic disorder. It is caused by a lack of sufficient activity of the lysosomal enzyme known as glucocerebrosidase, which leads to an accumulation of glucocerebroside, a fatty substance, in the spleen, liver, bone marrow, and rarely, the lungs or central nervous system. While there are several treatments available for people with Type 1 Gaucher disease and the visceral aspects of Type 3 Gaucher disease, no cure is present for any type of Gaucher disease. Clinical trials are currently underway to investigate the safety and efficacy of gene therapy in Gaucher disease, which has the potential to become a new type of (curative) treatment in the future. Gene therapy is a relatively new therapeutic approach, and with the desire to keep the community informed about new treatment developments, the International Gaucher Alliance (IGA) set-up a Gaucher disease specific survey to gauge current perceptions. The survey aimed to benchmark understanding of, and the educational needs surrounding, gene therapy among the Gaucher disease community. Body An international, online survey was developed, comprising twelve questions ranging from multiple choice, Likert scale, single tick-box, ranking and open questions. The survey was developed following three patient and caregiver focus groups and underwent review from members of the IGA for readability and accuracy before going live to respondents. The survey was available for two months and shared to audiences via specific Gaucher community channels. Conclusion Over 100 patients and parents/caregivers from the Gaucher disease community completed the survey, including people living with Type 1 Gaucher disease (52.88%), people living with Type 3 Gaucher disease (3.85%), parents/caregivers of people living with Type 1, 2 or 3 Gaucher disease (39.42%), and other (3.85%) who were defined as parents of multiple people with Gaucher disease. The survey uncovered various commonalities in perception of gene therapy among all groups, with large knowledge gaps identified on the mode of action, the usefulness of gene therapy and overall understanding of the therapeutic area. This survey provides an overview of the type of information that could be valuable to the Gaucher disease community when developing educational materials. Supplementary Information The online version contains supplementary material available at 10.1186/s13023-022-02576-3.
| S-EPMC9824927 | biostudies-literature
Project description:To assess patient and caregiver perceptions of what constitutes quality care in home-based primary care (HBPC).Cross-sectional qualitative design; semistructured interview study.Academic home-based primary care program.Homebound patients (n = 13) and 10 caregivers (n = 10) receiving HBPC.Semistructured interviews explored experiences with a HBPC program and perceptions of quality care. Interviews were audio-recorded and transcribed. Qualitative content analysis was performed to identify major themes.Five major themes emerged related to participant perceptions of quality care: access, affordability, competency, care coordination, goal attainment. Participants felt that reliable, consistent access provided "peace of mind" and reduced hospital and emergency department use. Insurance coverage of program costs and coordinated care provided by an interdisciplinary team were positively regarded. Interpersonal skills and technical abilities of providers influenced patient perception of provider competency. Assessing and helping patients attain care goals contributed to a perception of quality care.Patients and caregivers associate high-quality HBPC with around-the-clock access to affordable interdisciplinary providers with strong interpersonal skills and technical competency. These results expand on prior research and are concordant with HBPC goals of around-the-clock access to multidisciplinary teams with the goals of reduced emergency department and hospital use. HBPC programs should be structured to optimize access, affordability, coordinated care, and goal ascertainment and alignment. Quality indicators should be created and validated with these patient and caregiver views of care quality in mind.
| S-EPMC4988902 | biostudies-literature
Project description:BackgroundIn 2022, it was estimated that more than 80,000 new cases of bladder cancer (BC) were diagnosed in the United States, 12% of which were locally advanced or metastatic BC (advanced BC). These forms of cancer are aggressive and have a poor prognosis, with a 5-year survival rate of 7.7% for metastatic BC. Despite recent therapeutic advances for advanced BC, little is known about patient and caregiver perceptions of different systemic treatments. To further explore this topic, social media can be used to collect the perceptions of patients and caregivers when they discuss their experiences on forums and online communities.ObjectiveThe aim of this study was to assess patient and caregiver perceptions of chemotherapy and immunotherapy for treating advanced BC from social media-posted data.MethodsPublic posts on social media in the United States between January 2015 and April 2021 from patients with advanced BC and their caregivers were collected. The posts included in this analysis were geolocalized to the United States; collected from publicly available domains and sites, including social media sites such as Twitter and forums such as patient association forums; and were written in English. Posts mentioning any line of chemotherapy or immunotherapy were qualitatively analyzed by two researchers to classify perceptions of treatments (positive, negative, mixed, or without perception).ResultsA total of 80 posts by 69 patients and 142 posts by 127 caregivers mentioning chemotherapy, and 42 posts by 31 patients and 35 posts by 32 caregivers mentioning immunotherapy were included for analysis. These posts were retrieved from 39 public social media sites. Among patients with advanced BC and their caregivers, treatment perceptions of chemotherapy were more negative (36%) than positive (7%). Most of the patients' posts (71%) mentioned chemotherapy factually without expressing a perception of the treatment. The caregivers' perceptions of treatment were negative in 44%, mixed in 8%, and positive in 7% of posts. In combined patient and caregiver posts, immunotherapy was perceived positively in 47% of posts and negatively in 22% of posts. Caregivers also posted more negative perceptions (37%) of immunotherapy than patients (9%). Negative perceptions of both chemotherapy and immunotherapy were mainly due to side effects and perceived lack of effectiveness.ConclusionsDespite chemotherapy being standard first-line therapy for advanced BC, negative perceptions were identified on social media, particularly among caregivers. Addressing these negative perceptions of treatment may improve treatment adoption. Strengthening support for patients receiving chemotherapy and their caregivers to help them manage side effects and understand the role of chemotherapy in the treatment of advanced BC would potentially enable a more positive experience.
| S-EPMC10131927 | biostudies-literature
Project description:Background. Shared decision making is a cornerstone of an informed consent process for cancer treatment, yet there are often many physician and patient-related barriers to participation in the process. Decisions in cancer care are often perceived as relating to a discrete, treatment decision event, yet there is evidence that decisions are longitudinal in nature and reflect a multifactorial experience. Objective. To explore patient and caregiver perceptions of the choices and decision-making opportunities within cancer care. Design. Qualitative in-depth interviews with 37 cancer patients and 7 caregivers carried out as part of an evaluation of a cancer center's effort to improve patient experience. Results. Participants described decision making related to four distinct phases in complex cancer care, with physicians leading, and often limiting, decisions related to disease assessment and treatment options and access, and patients leading decisions related to physician selection. Though physicians led many decisions, patients had a moderating influence on treatment, such that if patients did not like options presented, they would reconsider their options and sometimes switch physicians. Patients had various strategies for dealing with uncertainty when faced with decisions, such as seeking additional information to make an informed choice or making a conscious choice to defer decision making to the physician. Limitations. Patients were sampled from one academic cancer center that serves a predominantly Caucasian, Asian, and Hispanic/Latino population and received complex treatment. Conclusion. Because of the complexity of cancer treatment, many patients felt as though they were a "passenger" in decision making about care and did not lead many of the decisions, though many patients trusted their doctors to make the best decisions and were comforted by their expertise.
| S-EPMC7294494 | biostudies-literature
Project description:BackgroundHome dialysis confers similar survival and greater quality of life than in-center hemodialysis for adults with ESKD but remains underutilized. We examined challenges and facilitators to implementation of home dialysis and identified stakeholder-centered strategies for improving it.MethodsWe conducted a qualitative, cross-sectional, multisite evaluation that included five geographically dispersed Veterans Health Administration (VHA) home dialysis programs. Participants included patients with ESKD receiving home dialysis, their informal caregivers, and home dialysis staff. Semistructured telephone interviews were conducted and audio-recorded from 2017 through 2018, to assess perceived barriers and facilitators to patient home dialysis use in VHA. Transcribed interviews were analyzed thematically by each participant group.ResultsParticipants included 22 patients receiving home dialysis (18 on peritoneal dialysis [PD] and four hemodialysis [HD]); 20 informal caregivers, and 19 home dialysis program staff. Ten themes emerged as challenges to implementing home dialysis, of which six (60%) spanned all groups: need for sterility, burden of home dialysis tasks, lack of suitable home environment, physical side effects of home dialysis, negative psychosocial effects of home dialysis, and loss of freedom. Four themes (40%), identified only by staff, were insufficient self-efficacy, diminished peer socialization, geographic barriers, and challenging health status. Twelve themes emerged as facilitators to implementing home dialysis, of which seven (58%) spanned all groups: convenience, freedom, avoidance of in-center HD, preservation of autonomy, adequate support, favorable disposition, and perceptions of improved health. Two themes (17%) common among patients and staff were adequate training and resources, and physical and cognitive skills for home dialysis. Recommendations to promote implementation of home dialysis common to all participant groups entailed incorporating mental health care services, offering peer-to-peer coaching, increasing home visits, providing health data feedback, and reducing patient burden.ConclusionsStakeholder-centered challenges were rigorously identified. Facilitators and recommendations can inform efforts to support home dialysis implementation.
| S-EPMC8986044 | biostudies-literature