A QUALITATIVE INVESTIGATION OF THE IMPACT OF HOME-BASED PRIMARY CARE ON FAMILY CAREGIVERS

2019 ◽  
pp. 1-4
Author(s):  
E. Wool ◽  
J.L. Shotwell ◽  
J. Slaboda ◽  
A. Kozikowski ◽  
K.L. Smith ◽  
...  

Background: Home-based primary care (HBPC) provides team-based clinical care for homebound patients who have difficulty accessing typical outpatient care. Interdisciplinary team members also provide social and emotional support and serve as a resource for family caregivers, who often experience significant emotional stress. Objectives: This qualitative study explores the impact of HBPC on family caregivers to identify aspects of the program that caregivers find most helpful and meaningful as well as areas for improvement. Design: Semi structured recorded interviews were conducted with family caregivers of frail, elderly homebound patients. Interviews included the following topics: overall program satisfaction and suggestions for improvement. Setting: A HBPC program serving patients in Queens, Nassau and Suffolk counties in New York. Participants: Nineteen family caregivers: 13 women, 6 men; 10 were adult children; 6 were spouses, and 3 were other family members of patients in a HBPC program. Measurements: Thematic coding of all recorded transcribed interviews was prepared by 3 qualitative coders. Interrater reliability was conducted to ensure reliability across coders before themes were disseminated and discussed until consensus was achieved with the larger group of investigators. Results: Three main themes were identified: the importance of staff emotional support; the burden of caring for homebound patients; and the need for a broader range of home-based services. Multiple family members noted that the program not only had saved their loved one’s life, but had also metaphorically saved their own. Conclusions: Family caregivers value the communication and accessibility of HBPC and report that the program has a positive impact on their stress and mental health. Results can inform key aspects that need to be retained or enhanced with the expansion in HBPC programs.

Author(s):  
Ksenia Gorbenko ◽  
Emily Franzosa ◽  
Sybil Masse ◽  
Abraham A Brody ◽  
Orla Sheehan ◽  
...  

Author(s):  
Emily Franzosa ◽  
Ksenia Gorbenko ◽  
Abraham A. Brody ◽  
Bruce Leff ◽  
Christine S. Ritchie ◽  
...  

Author(s):  
Cari Levy ◽  
Aryan Esmaeili ◽  
Dawn Smith ◽  
Robert Hogikyan ◽  
Vyjeyanthi Periyakoil ◽  
...  

JMIR Aging ◽  
10.2196/12415 ◽  
2019 ◽  
Vol 2 (1) ◽  
pp. e12415 ◽  
Author(s):  
Andrzej Kozikowski ◽  
Jillian Shotwell ◽  
Eve Wool ◽  
Jill C Slaboda ◽  
Karen A Abrashkin ◽  
...  

Background Novel and sustainable approaches to optimizing home-based primary care (HBPC) programs are needed to meet the medical needs of a growing number of homebound older adults in the United States. Telehealth may be a viable option for scaling HBPC programs. Objective The purpose of this qualitative study was to gain insight into the perspectives of HBPC staff regarding adopting telehealth technology to increase the reach of HBPC to more homebound patients. Methods We collected qualitative data from HBPC staff (ie, physicians, registered nurses, nurse practitioners, care managers, social workers, and medical coordinators) at a practice in the New York metropolitan area through 16 semistructured interviews and three focus groups. Data were analyzed thematically using the template analysis approach with Self-Determination Theory concepts (ie, relatedness, competence, and autonomy) as an analytical lens. Results Four broad themes—pros and cons of scaling, technology impact on staff autonomy, technology impact on competence in providing care, and technology impact on the patient-caregiver-provider relationship—and multiple second-level themes emerged from the analysis. Staff acknowledged the need to scale the program without diminishing effective patient-centered care. Participants perceived alerts generated from patients and caregivers using telehealth as potentially increasing burden and necessitating a rapid response from an already busy staff while increasing ambiguity. However, they also noted that telehealth could increase efficiency and enable more informed care provision. Telehealth could enhance the patient-provider relationship by enabling caregivers to be an integral part of the patient’s care team. Staff members raised the concern that patients or caregivers might unnecessarily overutilize the technology, and that some home visits are more appropriate in person rather than via telehealth. Conclusions These findings suggest the importance of considering the perspectives of medical professionals regarding telehealth adoption. A proactive approach exploring the benefits and concerns professionals perceive in the adoption of health technology within the HBPC program will hopefully facilitate the optimal integration of telehealth innovations.


Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 1019-1019
Author(s):  
Nicholas Hamilton ◽  
Payal Desai ◽  
Nita Williams ◽  
Mikaela D. Moore ◽  
Andrew I. Schamess

Background: The median life expectancy of patients with sickle cell disease surpassed 40 years of age in the last two decades. While sickle cell patients overall are known to have high utilization of health services due to vaso-occlusive pain crises (VOC), few studies have focused on the impact of age on utilization pattern. Due to this, our understanding of the patient population is frequently skewed based on data on younger patients. This study examines the utilization of healthcare in patients in two groups: below 40 years of age, and 40 years and over. We also examined the impact on these two cohorts of a home-based primary care program. Methods: All patients were enrolled in a home-based primary care program in which their primary care doctor visited their home every 4-6 weeks. Health utilization data were collected retrospectively, through chart review for one year prior to joining the home-based primary care program, and prospectively for one year after joining the program. Primary care appointments, reported crises, Sickle Cell Day Hospital visits, ED visits, admissions, 30-day readmissions, and total admission days were recorded. Results: A total of 30 patients was enrolled in the study, and 58 years of data were collected. There were 16 patients between 18 and 39, and 14 patients aged 40 and over. 50% of the 40 and over age group was SS genotype and 50% SC compared to only one patient in the below 40 population had genotype SC. The groups were not significantly different regarding gender distribution (57% female in the 40 and over population vs 50% female in the below 40 population). The 40 and over population had on average more comorbidities per patient. The 40 and over population had significantly more primary care visits every year both before and after the start of the home visits compared to the below 40 population,. The 40 and over population, also had significantly lower overall rates of acute care utilization than the patients under 40: number of crises, ED visits, admissions, 30-day readmissions, and total hospital admission days. When comparing pre and post home visiting within the 40 and older population, there was an increase in primary care visits and a decrease in in reported crises, ED visits, admissions and readmissions. There was no change in these parameters in the 18-39 year old patient group. Discussion: As sickle cell patients age, they are more likely to have cumulative co-morbidities due to their sickle cell disease. Despite their more advanced age and their increase in co-morbid conditions, patients 40 and above were shown in our study to have fewer ED visits and admissions than younger patients, and to further reduce ED visits and admissions when provided with home-based primary care. The younger group had higher utilization at baseline, and did not show improvement when receiving home-based primary care. The reduced acute care utilization in the older group could be due to increased use of primary care, which was further enhanced by enrollment in the home-based primary care program; better adherence to medical treatment; more skill and experience in disease self-management; better social support; or fewer vaso-occlusive crises despite a higher number of co-morbid conditions. The higher prevalence of SC disease in the older cohort is a possible confounder. Those patients with higher utilization at a younger age may be higher risk of mortality, thereby leading to a survivor effect in the older population. Research in the general medical population has shown that home-based primary care reduces acute care utilization in high-utilizing patients with multiple chronic conditions, but more research is needed on the impact in sickle cell patients. Conclusion: This is the first study, to our knowledge, of the impact of home-based primary care on adults with sickle cell disease. In this study, sickle cell patients aged 40 and under showed overall more acute care utilization than those over age 40. The older population had an increase in primary care visits, and overall a significant decrease in healthcare utilization after enrollment in the home visiting program. We did not see a significant decrease in utilization in the younger population with home visits. Disclosures Desai: Global Blood Therapeutics: Membership on an entity's Board of Directors or advisory committees, Research Funding; Ironwood: Other: Adjudication Board; University of Pittsburgh: Research Funding; Novartis: Research Funding; Pfizer: Membership on an entity's Board of Directors or advisory committees, Research Funding; Potomac: Speakers Bureau.


2021 ◽  
Vol 39 (4) ◽  
pp. 211-214
Author(s):  
Alex D. Federman ◽  
Bruce Leff ◽  
Abraham A. Brody ◽  
Sara Lubetsky ◽  
Albert L. Siu ◽  
...  

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 383-383
Author(s):  
Emily Franzosa ◽  
Sybil Masse ◽  
Abraham Brody ◽  
Jonathan Ripp ◽  
Katherine Ornstein ◽  
...  

Abstract Research on professional burnout during the pandemic has focused on hospital-based health care workers. This study examined the psychological impact of the pandemic on home-based primary care (HBPC) providers. We interviewed 13 participants from six HBPC practices in the New York including medical/clinical directors, program managers, nurse practitioners, and social workers and analyzed the transcripts using inductive qualitative analysis approach. HBPC providers experienced emotional exhaustion and a sense of reduced personal accomplishment. They reported experiencing grief of losing many patients at once and pressure to adapt to changing circumstances quickly. They also reported feeling guilty for failing to protect their patients and reduced confidence in their professional expertise. Strategies to combat burnout included shorter on-call, regular condolence meetings to acknowledge patient deaths, and peer support calls. Our study identifies potential resources to improve the well-being and reduce the risk of burnout among HBPC providers.


2018 ◽  
Author(s):  
Andrzej Kozikowski ◽  
Jillian Shotwell ◽  
Eve Wool ◽  
Jill Slaboda ◽  
Gregory Norman ◽  
...  

BACKGROUND Novel and sustainable approaches to scale Home-Based Primary Care (HBPC) programs are needed to meet the medical needs of a growing number of homebound older adults in the US. Telehealth may be a viable option for scaling HBPC programs. OBJECTIVE The purpose of this qualitative study was to gain insight into the perspectives of HBPC staff regarding adopting telehealth technology to scale the program. METHODS We collected qualitative data from HBPC staff (physicians, nurses, nurse practitioners, care managers, social workers, and medical coordinators) at a practice in the New York Metropolitan area through 16 semi-structured interviews and 3 focus groups. Data were analyzed thematically using the template analysis approach with Self-Determination Theory concepts (relatedness, competence, and autonomy) as an analytical lens. RESULTS Four broad themes (work climate, technology impact on staff autonomy, technology impact on competence in providing care, and technology impact on the patient-caregiver-provider relationship) and multiple second-level themes emerged from the analysis. Within the theme of work climate, staff acknowledged the need to scale the program without diminishing effective patient-centered care. Within the theme of technology impact on staff autonomy, participants perceived alerts generated from patients and caregivers using telehealth as a potentially increasing burden and necessitating a rapid response from an already busy staff while increasing ambiguity. Regarding technology impact on competence in providing care, participants noted that it could increase efficiency and enable more informed care provision. Regarding technology impact on the patient-provider relationship, participants noted the opportunity to make caregivers part of the team through telehealth. Staff members, however, were concerned that patients or caregivers might unnecessarily over utilize the technology, and that some visits are more appropriate in-person rather than via telehealth. CONCLUSIONS These findings suggest the importance of taking into account the perspectives of medical professionals regarding telehealth adoption. A proactive approach exploring the benefits and concerns professionals perceive in the adoption of health technology within the HBPC program is likely to facilitate the integration of telehealth innovations. CLINICALTRIAL Not applicable


2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S410-S411
Author(s):  
Darby Morhardt ◽  
Mary Mittelman ◽  
Ann Burgunder ◽  
Thea Micoli

Abstract Psychosocial interventions have the potential to offer substantial benefit to people with dementia and their family caregivers. The Buddy Program is an experiential learning program that pairs students with persons with dementia for activities and relationship-building. Previous studies have demonstrated the program’s positive impact on student knowledge and attitudes. New York University’s (NYU) Alzheimer’s Family Support Program began replicating the Buddy Program in 2017 and has enrolled 80 students. Northwestern University’s (NU) Buddy Program, in its 22nd year, has enrolled 260. This presentation describes the impact of the program on the mentors (NU) and the caregivers (NYU). Post program focus groups with mentors and student journals describing interactions with the caregiver were thematically analyzed. Mentors describe feelings of pride in the mentorship role, enjoyment being with student, and the opportunity to develop a new friendship. Caregivers enjoyed the respite provided by the buddies, knowing that their relatives with dementia were enjoying themselves and seeing their relatives with dementia in the role of valued companion. Qualitative data from caregivers and mentors participating in the buddy programs at NU and NYU underscore the possibility that people with dementia can still make contributions to society. The buddy program has a positive impact on quality of life for persons living with dementia and their family members, while providing a valuable educational experience for students. Further research on the buddy program’s benefits is warranted.


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