-
PEC Innovation Dec 2023To evaluate a facilitated, 90-min session, delivered for four weeks, Online Carer Wellbeing and Connection Program in Victoria, Australia.
OBJECTIVE
To evaluate a facilitated, 90-min session, delivered for four weeks, Online Carer Wellbeing and Connection Program in Victoria, Australia.
METHODS
One hundred and three carers took part in the evaluation. Eighty-six completed both pre- and post-program surveys evaluating program impacts on psychological distress, perceived loneliness, and social support. Qualitative interviews were conducted ( = 76) post-program for experiential data.
FINDINGS
Paired samples -tests showed significant decreases between pre- and post-program for psychological distress ( = 25.10, = 7.08; = 22.00, = 6.57; (85) = 4.88, = 0.000), perceived loneliness ( = 6.69, = 1.89; = 6.14, = 1.76; (85) = 3.45, = 0.000) and perceived social support ( = 8.31, = 2.48; = 8.83, = 2.21; (85) = -2.54, = 0.013). Thematic analysis identified positive experiences and the mechanisms of action (or the ingredients for program success) as: 1. Delivery by a trained facilitator; 2. Provision of respite for person being cared for during meetings; 3. Technical assistance; 4. Online modality; 5. Inclusivity; 6. Diversity of experience; 7. Shared understanding; 8. Safety; 9. Emotional release; 10. Reflection, and; 11. Self-care practices.
INNOVATION
A model illustrating the mechanisms of action based on the findings of the mixed-methods evaluation is presented to support wider implementation and translation.
CONCLUSION
The online program effectively reduced psychological distress and loneliness and improved carer wellbeing.
PubMed: 37771462
DOI: 10.1016/j.pecinn.2023.100218 -
Frontiers in Health Services 2023Patients with medical and social complexity require care administered through cross-sector collaboration (CSC). Due to organizational complexity, biomedical emphasis,...
Expanding the evidence for cross-sector collaboration in implementation science: creating a collaborative, cross-sector, interagency, multidisciplinary team to serve patients experiencing homelessness and medical complexity at hospital discharge.
INTRODUCTION
Patients with medical and social complexity require care administered through cross-sector collaboration (CSC). Due to organizational complexity, biomedical emphasis, and exacerbated needs of patient populations, interventions requiring CSC prove challenging to implement and study. This report discusses challenges and provides strategies for implementation of CSC through a collaborative, cross-sector, interagency, multidisciplinary team model.
METHODS
A collaborative, cross-sector, interagency, multidisciplinary team was formed called the Buffalo City Mission Recuperative Care Collaborative (RCU Collaborative), in Buffalo, NY, to provide care transition support for people experiencing homelessness at acute care hospital discharge through a medical respite program. Utilizing the Expert Recommendations for Implementing Change (ERIC) framework and feedback from cross-sector collaborative team, implementation strategies were drawn from three validated ERIC implementation strategy clusters: 1) Develop stakeholder relationships; 2) Use evaluative and iterative strategies; 3) Change infrastructure.
RESULTS
Stakeholders identified the following factors as the main barriers: organizational culture clash, disparate visions, and workforce challenges related to COVID-19. Identified facilitators were clear group composition, clinical academic partnerships, and strategic linkages to acute care hospitals.
DISCUSSION
A CSC interagency multidisciplinary team can facilitate complex care delivery for high-risk populations, such as medical respite care. Implementation planning is critically important when crossing agency boundaries for new multidisciplinary program development. Insights from this project can help to identify and minimize barriers and optimize utilization of facilitators, such as academic partners. Future research will address external organizational influences and emphasize CSC as central to interventions, not simply a domain to consider during implementation.
PubMed: 37744643
DOI: 10.3389/frhs.2023.1124054 -
Geriatrics (Basel, Switzerland) Sep 2023Informal caregivers of people with neurocognitive disorders (NCDs) may play a decisive role in guaranteeing partners' participation in community-based physical exercise...
Informal caregivers of people with neurocognitive disorders (NCDs) may play a decisive role in guaranteeing partners' participation in community-based physical exercise interventions. However, little is still known about their perspective on being involved in such programs that are specifically designed for their partners. This study aimed to explore the views of caregivers of people with NCDs about taking part in a multicomponent physical exercise intervention with their partners and to explore the perceived impact of this program on those caregivers who enrolled in it. An exploratory qualitative study was conducted with 20 caregivers (67.5 ± 13.94 years; seven female) from the "Body & Brain" project. Ten took part in the physical exercise sessions (active-participating caregivers), and the others did not (social-participating caregivers). Data retrieved from semi-structured interviews were analyzed following a thematic analysis approach. Regardless of their participation level, all caregivers reported their inclusion to be important in enhancing their partners' initiation and engagement in the sessions; also, they all identified personal gains. Active-participating caregivers reported exercise-related benefits on general health, enjoyment, and social connectedness. Social-participating caregivers considered this intervention an opportunity for respite and appreciated being involved only occasionally (i.e., occasional gatherings or telephone contacts). The findings support the inclusion of caregivers in physical exercise interventions designed for partners with NCDs, considering their decisive role in the partners' adherence and engagement and due to the perceived gains. Future community-based interventions designed for people with NCDs should consider giving caregivers the opportunity to choose whether they want or not to be actively involved in the exercise sessions. Further studies with larger samples are needed to verify these results, comparing caregivers' point of view at baseline and post-intervention.
PubMed: 37736886
DOI: 10.3390/geriatrics8050086 -
Health Expectations : An International... Sep 2023Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden,...
INTRODUCTION
Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems.
METHODS
We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second-level analysis involved applying themes and subthemes to cross-functional process maps.
FINDINGS
Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers.
CONCLUSION
The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN.
PATIENT OR PUBLIC CONTRIBUTION
The research team is composed of patients, researchers, clinicians and decision-makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way.
PubMed: 37705308
DOI: 10.1111/hex.13831 -
Healthcare Management Forum Mar 2024At the onset of the COVID-19 pandemic in early 2020, organizations providing residential and respite care for individuals with developmental disabilities and complex...
At the onset of the COVID-19 pandemic in early 2020, organizations providing residential and respite care for individuals with developmental disabilities and complex care needs in the Greater Toronto Area were largely unprepared. As case numbers surged, they lacked the expertise and resources needed to prevent spread across populations that are highly vulnerable to infection and poor outcomes. This article describes how these organizations, led by Safehaven, responded to an unprecedented emergency, and how the response is leading to sustainable improvements in care and safety for diverse vulnerable groups in congregate care settings. As the pandemic advanced, the Safehaven Program evolved with the solidification of the role of Infection Prevention and Control Champion lead role in Ontario and partnership with Reena in York Region.
Topics: Humans; COVID-19; Pandemics; Ontario; Medicine; Organizations
PubMed: 37682041
DOI: 10.1177/08404704231198199 -
Children (Basel, Switzerland) Jul 2023The family represents the most essential and supportive environment for children with cerebral palsy (CP). To improve children's outcomes, it is crucial to consider the...
BACKGROUND
The family represents the most essential and supportive environment for children with cerebral palsy (CP). To improve children's outcomes, it is crucial to consider the needs of families in order to offer family-centered care, which tailors services to these needs.
OBJECTIVE
We conducted a needs assessment to identify the family needs of patients with CP attending two hospitals in Accra.
METHODS
The study was a cross-sectional study involving primary caregivers of children with CP attending neurodevelopmental clinics. Structured questionnaires were used to collect data spanning an 8-month period. The data were summarized, and statistical inference was made.
RESULTS
Service needs identified were childcare, counseling, support groups, financial assistance, and recreational facilities. Information needs included adult education, job training/employment opportunities, education, health and social programs, knowledge about child development, and management of behavioral and feeding/nutrition problems. Reducing extensive travel time was desirable to improve access to healthcare. With the increasing severity of symptoms came the need for improved accessibility in the home to reduce the child's hardship, as well as assistive devices, recreational facilities, and respite for the caregiver(s).
CONCLUSION
Families of children with CP have information, service, and access needs related to their disease severity and family context.
PubMed: 37628312
DOI: 10.3390/children10081313 -
BMC Women's Health Aug 2023Urogynaecological conditions, such as pelvic organ prolapse, urinary incontinence, and urinary tract infection, can have a profound impact on people's lives. The...
BACKGROUND
Urogynaecological conditions, such as pelvic organ prolapse, urinary incontinence, and urinary tract infection, can have a profound impact on people's lives. The Independent Medicines and Medical Devices Safety Review highlights missed opportunities to prevent harm when patient voices are not incorporated into healthcare policy and practice. This resonates with the Women's Health Strategy for England. The National Institute for Health and Care Research (NIHR) Policy Research Programme funded this in-depth qualitative exploration of people's experiences of living with urogynaecological conditions, and of seeking healthcare treatment, to inform health and social care improvements in the UK.
METHODS
We conducted in-depth interviews online or by telephone (April 2021-December 2021) and used reflexive thematic analysis to develop themes that cut across urogynaecological conditions.
RESULTS
We spoke to seventy-four adults aged 22-84 across a range of backgrounds and lived experiences of urogynaecological conditions, including pelvic organ prolapse, urinary incontinence and persistent or recurring urinary tract infection. Eight themes were developed: [1] I get no respite from my own body; [2] I feel confined and separated; [3] I can no longer be 'me'; [4] I am constrained by stigma, shame and silence; [5] I feel fragmented and lost in the healthcare system; [6] I need to be heard, believed, and valued; [7] I need respect as an equal partner in healthcare; and [8] (Re)connected to a more open community.
CONCLUSIONS
High quality care focuses on the whole person rather than their body parts. Openness and candour support a shared decision-making model of care. A culture of shame can have a negative impact on access to health care and recovery.
Topics: Adult; Humans; Female; Qualitative Research; Urinary Incontinence; Delivery of Health Care; Pelvic Organ Prolapse; United Kingdom
PubMed: 37580761
DOI: 10.1186/s12905-023-02592-w -
Healthcare (Basel, Switzerland) Aug 2023In this qualitative study, we provided an in-depth understanding of how Community-Integrated Intermediary Care (CIIC), a new service model for family-based long-term...
Towards Cultural Adequacy of Experience-Based Design: A Qualitative Evaluation of Community-Integrated Intermediary Care to Enhance the Family-Based Long-Term Care for Thai Older Adults.
In this qualitative study, we provided an in-depth understanding of how Community-Integrated Intermediary Care (CIIC), a new service model for family-based long-term care (LTC), was perceived by its users. The CIIC, established in Chiang Mai, Northern Thailand, consisted of three main interventions: (1) A temporary respite care center; (2) A family-centered care capacity building; (3) Functional training delivered as community group exercise and home exercise to improve healthy ageing for independent older adults. Ten pairs of dependent Thai older adults, their primary family caregivers, and ten village health volunteers were recruited using the purposive sampling method. Data were collected via semistructured in-depth interviews. A thematic descriptive qualitative analysis was used for data analysis. The findings revealed that CIIC helped reduce the burden of family caregivers by providing respite, relief, and care coordination. The experiences of the CIIC users indicated possibilities for service redesign, development, and delivery strategies to better meet the LTC needs of older adults and family caregivers. Following the local stakeholders' commitment and local community health volunteers' network, a well-integrated formal and informal care CIIC model can be implied as an effective and sustainable ageing care service model in Thailand and other Asian countries in the future.
PubMed: 37570457
DOI: 10.3390/healthcare11152217 -
Parkinsonism & Related Disorders Nov 2023Device-aided therapy may improve the quality of life (QoL) for people with advanced Parkinson's disease (PD) and poorly controlled symptoms with oral therapy. MANAGE-PD...
Healthcare resource utilization and device-aided therapy discussions with eligible patients across the Parkinson's disease continuum: Revelations from the MANAGE-PD validation cohort.
INTRODUCTION
Device-aided therapy may improve the quality of life (QoL) for people with advanced Parkinson's disease (PD) and poorly controlled symptoms with oral therapy. MANAGE-PD is a validated tool classifying patients based on symptom control and advanced treatment eligibility. This study focused on patient/caregiver reported outcomes and healthcare resource utilization among patients grouped by MANAGE-PD categories.
METHODS
Device-aided therapy-naïve patients receiving oral treatments were identified from the Adelphi Parkinson's Disease Programme. Patients were categorized (category 1 to 3) using MANAGE-PD. PD-specific QoL (PDQ-39), care partner burden (ZBI), satisfaction with current treatment, healthcare resource utilization, associated healthcare costs, and future treatment discussion with providers were measured. Categories were compared using ANOVA, t-test, chi square and adjusted regression analyses.
RESULTS
Of the analytical sample (n = 2709), 18.9% were inadequately controlled on current therapy and potentially eligible for device-aided therapies (category 3). As expected, they had worse patient/caregiver reported outcomes versus patients in categories 1 or 2. However, the degree of difference in healthcare resource utilization, including: greater number of hospitalizations, emergency room (ER) visits and consultations, higher likelihood of being recipients of respite care, and greater PD treatment burden, was unexpected. Importantly, of patients in category 3 and their care partners, >40% did not report discussions with providers about device-aided therapies.
CONCLUSION
MANAGE-PD category 3 patients had significantly higher burden on healthcare resources versus patients well-controlled with oral treatment or requiring only oral medication adjustments; yet almost half had no discussion on device-aided therapies with providers. Device-aided therapies may be considered in these patients.
Topics: Humans; Parkinson Disease; Quality of Life; Patient Acceptance of Health Care; Health Care Costs; Caregivers
PubMed: 37563079
DOI: 10.1016/j.parkreldis.2023.105514 -
PloS One 2023U.S. drug-related overdose deaths and Emergency Department (ED) visits rose in 2020 and again in 2021. Many academic studies and the news media attributed this rise...
OBJECTIVE
U.S. drug-related overdose deaths and Emergency Department (ED) visits rose in 2020 and again in 2021. Many academic studies and the news media attributed this rise primarily to increased drug use resulting from the societal disruptions related to the coronavirus (COVID-19) pandemic. A competing explanation is that higher overdose deaths and ED visits may have reflected a continuation of pre-pandemic trends in synthetic-opioid deaths, which began to rise in mid-2019. We assess the evidence on whether increases in overdose deaths and ED visits are likely to be related primarily to the COVID-19 pandemic, increased synthetic-opioid use, or some of both.
METHODS
We use national data from the Centers for Disease Control and Prevention (CDC) on rolling 12-month drug-related deaths (2015-2021); CDC data on monthly ED visits (2019-September 2020) for EDs in 42 states; and ED visit data for 181 EDs in 24 states staffed by a national ED physician staffing group (January 2016-June 2022). We study drug overdose deaths per 100,000 persons during the pandemic period, and ED visits for drug overdoses, in both cases compared to predicted levels based on pre-pandemic trends.
RESULTS
Mortality. National overdose mortality increased from 21/100,000 in 2019 to 26/100,000 in 2020 and 30/100,000 in 2021. The rise in mortality began in mid-to-late half of 2019, and the 2020 increase is well-predicted by models that extrapolate pre-pandemic trends for rolling 12-month mortality to the pandemic period. Placebo analyses (which assume the pandemic started earlier or later than March 2020) do not provide evidence for a change in trend in or soon after March 2020. State-level analyses of actual mortality, relative to mortality predicted based on pre-pandemic trends, show no consistent pattern. The state-level results support state heterogeneity in overdose mortality trends, and do not support the pandemic being a major driver of overdose mortality. ED visits. ED overdose visits rose during our sample period, reflecting a worsening opioid epidemic, but rose at similar rates during the pre-pandemic and pandemic periods.
CONCLUSION
The reasons for rising overdose mortality in 2020 and 2021 cannot be definitely determined. We lack a control group and thus cannot assess causation. However, the observed increases can be largely explained by a continuation of pre-pandemic trends toward rising synthetic-opioid deaths, principally fentanyl, that began in mid-to-late 2019. We do not find evidence supporting the pandemic as a major driver of rising mortality. Policymakers need to directly address the synthetic opioid epidemic, and not expect a respite as the pandemic recedes.
Topics: Humans; Analgesics, Opioid; Pandemics; COVID-19; Drug Overdose; Opioid-Related Disorders; Emergency Service, Hospital
PubMed: 37561686
DOI: 10.1371/journal.pone.0281227