Care Partners Research Articles

Collaborative governance in a primary health care partnership in Papua New Guinea.

Collaboration in primary health care is recommended to achieve global health goals. Public-private partnerships (PPP) are one means of collaboration. Our study examined collaboration in a case study PPP for primary health care in Western Province, Papua New Guinea (PNG). Interviews with key informants involved in the PPP were conducted and key programme documents were reviewed. Data were coded and deductively analysed using the collaborative governance model developed by Emerson, Nabatchi and Balogh. The key features of the case study PPP that were highlighted by the collaborative governance model were: identification of partners, trust, procedural arrangements, and leadership. We identified four lessons of significance in the practical establishment and implementation of a partnership in a complex and challenging setting such as PNG: the need to (i) prioritise in-person collaboration and communication, (ii) engage dynamic individuals to lead the partnership, (iii) encourage relationships across all sectors and actors, and (iv) remain flexible and adapt to local cultural and context. Collaborative governance offers a practical framework to understand, assess and strengthen collaboration in multi-stakeholder partnerships in the health sector.

Burden and preparedness of care partners of people living with amyotrophic lateral sclerosis at home in Korea: A care partner survey.

The care burden of people living with amyotrophic lateral sclerosis (pALS) increases with disease progression. This study aimed to investigate the home care status and preparedness of care partners of pALS (cALS) in Korea. An online survey was conducted with family care partners of patients diagnosed with ALS for over 1 year in 2022. The data collected included care time, depression evaluated using the patient health questionnaire-9 (PHQ-9), preparedness for caregiving scale (PCS), and caregiver competence scale (CCS). Results were compared based on whether the pALS underwent a tracheostomy or not. Ninety-eight cALS of 98 pALS participated in the study, of whom 59 pALS had undergone tracheostomy. Among the cALS, 60.2% were spouses, and 34.7% were children. The cALS took care of the patients for 13 (8-20) hours/day (median, interquartile range [IQR]) on weekdays and 15 (10-24) h/day on weekends. Among the cALS, 91.8% were depressed, and 28.6% had severe depression. The median (IQR) PCS and CCS scores were low (11/32 (8-15) and 8/20 (8-11), respectively), and both were lower in those caring for patients without than with tracheostomy (p < .001 and p < .02, respectively). Most cALS (77.6%) wished to continue caring for their pALS at home. Family care partners of pALS spend more than half of each day caring for patients and are often depressed. Most cALS preferred providing care at home, but felt ill-prepared. Designing home-based medical care is necessary for pALS to thrive at home.

Personalized Tablets for Residents in Long-Term Care to Support Recreation and Mitigate Isolation

ObjectivesThere is a digital divide in long-term care homes (LTCHs), with few residents having regular access to internet-connected devices. In this study, we provided long-term care residents with personalized and adapted tablets. We aimed to understand what factors influenced tablet use and the impact of tablet access on opportunities for social connection and recreation. DesignA pragmatic, mixed-methods multicenter, open-label, uncontrolled interventional study with assessment of outcomes at baseline and 3 months. Setting and ParticipantsA total of 58 resident-care partner dyads were recruited across 7 LTCHs in Ontario, Canada. The main inclusion criterion was having a care partner willing to participate, and we excluded residents who already had an internet-connected device. MethodsResident demographics, functional status assessments, and recreational engagement were captured using items from the Resident Assessment Instrument/Minimum Data Set. Care partners completed a questionnaire about relational closeness and site leads assessed resident quality of life before and approximately 3 months after tablet distribution. Interviews with 23 care partners and 7 residents post-implementation were completed and analyzed. ResultsThe median tablet use by participants was 7 minutes (interquartile range 27) per day on average over the study period. Predictors of higher tablet use were younger age, higher cognitive functioning, absence of hearing impairment, and having a care partner who lives farther away. There was no improvement on quantitative measures of quality of life, recreation, or relational closeness. In interviews, participants identified many different opportunities afforded by access to personalized tablets. Conclusions and ImplicationsSome LTCH residents without current access to the internet benefit from being provided a personal tablet and use it in a variety of ways to enrich their lives. There is a critical need to bridge the digital divide for this population.

Assessing Advance Care Planning Fidelity within the Context of Cognitive Impairment: The SHARE Trial

ContextAdvance care planning (ACP) is critical among primary care patients with cognitive impairment, but few interventions have tested ACP with this population. ObjectiveDescribe the development and evaluation of a tool for assessing ACP fidelity within the context of cognitive impairment, including inter-rater reliability, convergent validity, and overall fidelity using clinical trial data. DesignSHARE is a multicomponent intervention inclusive of facilitated ACP conversations. From a two group, single blind, randomized controlled trial, recorded ACP conversations were rated for fidelity. 145 primary care patients and their care partners were randomized to receive the intervention. Participating patients were 80+ years, had a care partner, and indications of cognitive impairment. An ACP Fidelity Checklist was developed with three subscales: Meeting Set-Up; ACP Meeting Topics; and Communication Skills. Scores were converted to percentages (100% = perfect fidelity) with a target of ≥80% fidelity. A post-ACP meeting report completed by ACP facilitators was used to assess convergent validity of the checklist. Intra-class correlation (ICC) was to evaluate inter-rater reliability. ResultsACP conversations averaged 33.6 minutes (SD = 14.1). The mean fidelity score across N = 91 rated meetings was 82.9%, with a range of 77.3%-90.6% for subscales. 63.7% of meetings achieved a rating of ≥80%. Cognitive function was positively associated with patient participation (rho = .59, P < 0.001). For checklist items, ICC scores ranged from 0.43–0.96. Post-ACP meeting form scores were correlated with the checklist Meeting Topics subscale (r = 0.36, P = 0.001). ConclusionsAssessing the fidelity of ACP conversations involving primary care patients living with cognitive impairment and their care partners is feasible.

Challenges and proposed solutions to conducting Alzheimer's disease psychosis trials.

Alzheimer's disease psychosis (ADP) produces a significant burden for patients and their care partners, but at present there are no approved treatments for ADP. The lack of approved treatments may be due to the challenges of conducting clinical trials for this disease. This perspective article discusses distinct challenges and proposed solutions of conducting ADP trials involving seven key areas: (1) methods to reduce the variable and sometimes high rates of placebo response that occur for treatments of neuropsychiatric symptoms; (2) the use of combined or updated criteria that provide a precise, consensus definition of ADP; (3) the use of eligibility criteria to help recruit individuals representative of the larger ADP population and overcome the difficulty of recruiting patients with moderate-to-severe ADP; (4) consideration of multiple perspectives and implementation of technology to reduce the variability in the administration and scoring of neuropsychiatric symptom assessments; (5) the use of clinically appropriate, a priori-defined severity thresholds and responder cutoffs; (6) the use of statistical approaches that address absolute effect sizes and a three-tier approach to address the fluctuation of neuropsychiatric symptoms; and (7) the implementation of feasible diagnostic and target-engagement biomarkers as they become available. The goal of these proposed solutions is to improve the evaluation of potential ADP therapies, within the context of randomized, placebo-controlled trials with clinically meaningful endpoints and sustained treatment responses.

Diagnoses and Treatment of Behavioral and Psychological Symptoms of Dementia Among Racially and Ethnically Diverse Persons Living with Dementia.

Behavioral and psychological symptoms of dementia (BPSD) and prescribed central nervous system (CNS) active drugs to treat them are prevalent among persons living with Alzheimer's disease and related dementias (PLWD) and lead to negative outcomes for PLWD and their caregivers. Yet, little is known about racial/ethnic disparities in diagnosis and use of drugs to treat BPSD. Quantify racial/ethnic disparities in BPSD diagnoses and CNS-active drug use among community-dwelling PLWD. We used a retrospective cohort of community-dwelling Medicare Fee-for-Service beneficiaries with dementia, continuously enrolled in Parts A, B and D, 2017-2019. Multivariate logistic models estimated rates of BPSD diagnosis and, conditional on diagnosis, CNS-active drug use. Among PLWD, 67.1% had diagnoses of an affective, psychosis or hyperactivity symptom. White (68.3%) and Hispanic (63.9%) PLWD were most likely, Blacks (56.6%) and Asians (52.7%) least likely, to have diagnoses. Among PLWD with BPSD diagnoses, 78.6% took a CNS-active drug. Use was highest among whites (79.3%) and Hispanics (76.2%) and lowest among Blacks (70.8%) and Asians (69.3%). Racial/ethnic differences in affective disorders were pronounced, 56.8% of white PLWD diagnosed; Asians had the lowest rates (37.8%). Similar differences were found in use of antidepressants. BPSD diagnoses and CNS-active drug use were common in our study. Lower rates of BPSD diagnoses in non-white compared to white populations may indicate underdiagnosis in clinical settings of treatable conditions. Clinicians' review of prescriptions in this population to reduce poor outcomes is important as is informing care partners on the risks/benefits of using CNS-active drugs.

Reducing Undue Burden on Nurses Related to Limited Care Partner Visitation: Lessons Learned for the Future.

The purpose of this article was to report best practices for reducing undue burden on nurses related to limited care partner visitation. Care partners are beneficial to hospitalized patients. Restricted care partner visitation not only impacts patients and care partners but also affects nurses. Using the Johns Hopkins Evidence-Based Practice model, best practices for reducing nurse burden during periods of restricted visitation were evaluated. Best practices include evidence-based visiting policies, technology to facilitate communication, creation of a communication liaison role or team, and communication skills training for nurses. Nursing leaders should proactively prevent the harmful impact that visitor restrictions have on nurses.

A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study.

Care partners of people with serious illness experience significant challenges and unmet needs during the patient's treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available. This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement. An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network. The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period. A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network.

Differentiating Prodromal Dementia with Lewy Bodies from Prodromal Alzheimer's Disease: A Pragmatic Review for Clinicians.

This pragmatic review synthesises the current understanding of prodromal dementia with Lewy bodies (pDLB) and prodromal Alzheimer's disease (pAD), including clinical presentations, neuropsychological profiles, neuropsychiatric symptoms, biomarkers, and indications for disease management. The core clinical features of dementia with Lewy bodies (DLB)-parkinsonism, complex visual hallucinations, cognitive fluctuations, and REM sleep behaviour disorder are common prodromal symptoms. Supportive clinical features of pDLB include severe neuroleptic sensitivity, as well as autonomic and neuropsychiatric symptoms. The neuropsychological profile in mild cognitive impairment attributable to Lewy body pathology (MCI-LB) tends to include impairment in visuospatial skills and executive functioning, distinguishing it from MCI due to AD, which typically presents with impairment in memory. pDLB may present with cognitive impairment, psychiatric symptoms, and/or recurrent episodes of delirium, indicating that it is not necessarily synonymous with MCI-LB. Imaging, fluid and other biomarkers may play a crucial role in differentiating pDLB from pAD. The current MCI-LB criteria recognise low dopamine transporter uptake using positron emission tomography or single photon emission computed tomography (SPECT), loss of REM atonia on polysomnography, and sympathetic cardiac denervation using meta-iodobenzylguanidine SPECT as indicative biomarkers with slowing of dominant frequency on EEG among others as supportive biomarkers. This review also highlights the emergence of fluid and skin-based biomarkers. There is little research evidence for the treatment of pDLB, but pharmacological and non-pharmacological treatments for DLB may be discussed with patients. Non-pharmacological interventions such as diet, exercise, and cognitive stimulation may provide benefit, while evaluation and management of contributing factors like medications and sleep disturbances are vital. There is a need to expand research across diverse patient populations to address existing disparities in clinical trial participation. In conclusion, an early and accurate diagnosis of pDLB or pAD presents an opportunity for tailored interventions, improved healthcare outcomes, and enhanced quality of life for patients and care partners.

Perception gaps of patient engagement for patient safety between healthcare professionals and the public in Korea

Background To ensure effective patient engagement, patients’ efforts, partnerships with healthcare professionals, and the organisation’s role in providing safe healthcare settings must be emphasised. Perception gaps regarding patient engagement between the public and healthcare professionals could prevent healthy partnerships from forming and hinder patient engagement activities. This study examined healthcare professionals’ perception of patient engagement and compared the findings with that determined for the public in a previous study. Methods An anonymous online survey was conducted in February 2020 among 1,007 healthcare professionals (physicians, nurses). The questionnaire comprised five parts regarding the perception of patient engagement. Descriptive analysis and Chi-squared/Fisher’s exact tests determined the frequency and significant differences among the public from previous study and healthcare professionals in this study. Results The perception of the importance of patient safety was high among healthcare professionals and the public. However, statistically significant differences in perceptions were observed among the public and healthcare professionals in all categories. The perception gaps were substantial between the groups in sub-categories of engagement for patient safety during medical treatment; 86% of physicians and 90% of nurses agreed that patients participate in the decision-making for the treatment process. Conversely, 58% of the public agreed. Only 22% of the public agreed with confirming healthcare professionals’ hand washing to prevent infection, versus 57% of physicians and 65% of nurses. More than 89% of healthcare professionals positively perceived medical dispute mediation versus only half of the public. In certain areas such as “medical dispute mediation and arbitration programs”, “fall prevention”, and “infection prevention”, there was a statistically significant difference in the perception of patient involvement among healthcare professionals, with nurses’ perception being particularly more positive than that of physicians. Conclusions The healthcare professionals’ perception of patient engagement was more positive than that of the public. To narrow the perception gaps and enhance the public’s perception, strategies involving changes in healthcare systems, promotional efforts, and educational initiatives should be developed. Additionally, strategies should be formulated for healthcare professionals to better engage as partners in patient care.

Same-Day Discharge in Minimally Invasive Gynecologic Surgery: A Care Partner Perspective [ID 2683597

INTRODUCTION: Same-day hospital discharge after minimally invasive gynecologic surgery has gained popularity and become feasible with increased adherence to enhanced recovery after surgery protocols. Benefits include reduced hospital admissions, increased cost-effectiveness, and practicality of patient recovery at home—without any demonstrable increase in patient harm or readmissions. Although studies show patients perceive same-day discharge favorably, there are little data regarding care partner perception of this trend. METHODS: A REDCap survey was administered prospectively to care partners of patients undergoing minimally invasive hysterectomy (MIH) within a single tertiary-care department between November 2022 and September 2023. The 16-question survey included questions evaluating care-partner perspectives regarding same-day discharge and postoperative home care. Approximately 75 patients were targeted for recruitment. Responses were analyzed using descriptive statistics. RESULTS: Approximately 66.7% of care partners indicated they were “very comfortable” caring for the patient at home the night of surgery. When asked to rate the level of concern about the patient going home on the same day as surgery, 64% selected a 2 or below on a 5-point Likert scale, with 36.4% of these individuals indicating that they were “not concerned at all.” Moreover, 42.4% of the respondents reported that this was their experience with postoperative home care. CONCLUSION: This study demonstrates that despite having no prior experience, care partners are comfortable caring for MIH patients on postoperative day 0. This is additive to current literature on patient comfort in same-day discharge. Thus, not only is same-day discharge a reasonable option for many patients but also most care partners are comfortable supporting this plan.

Occupational Therapy Practice Guidelines for Autistic People Across the Lifespan.

Occupational therapy practitioners need evidence to support interventions that promote subjective well-being among autistic people and their families through optimal engagement and participation in occupations. These Practice Guidelines are informed by systematic reviews to expand knowledge of interventions that promote access, inclusion, engagement, and optimal participation in occupations that are meaningful to autistic people. Our intent was to foster occupational therapy practitioners' clinical decision-making and reasoning when working with autistic people and their care partners. These Practice Guidelines were developed on the basis of four systematic reviews, supporting evidence and literature, along with continued revisions and integration through an iterative and collaborative process. A total of 98 articles were included in the systematic reviews, which are the foundation for practice recommendations in these guidelines. Forty-eight of the systematic review articles were used to inform the clinical recommendations included in these Practice Guidelines. Strong to moderate evidence indicates the need for multidisciplinary, goal-oriented interventions to support autistic people in different contexts. Although there is only emerging evidence in the inclusion of autistic people's strengths, interests, and perspectives to guide occupational therapy interventions, such practices can enhance the delivery of neurodiversity-affirming and trauma-informed practices. In addition, evidence is needed to support participation in activities of daily living (ADLs) for autistic youths. We recommend the use of strengths-based language to describe autistic people and the use of environmental adaptations, care partner education, and coaching to enhance occupational therapy service delivery. Plain-Language Summary: The literature is sparse regarding neurodiversity-affirming and trauma-informed practices for autistic youths, as well as for participation in activities of daily living (ADLs). These Practice Guidelines provide new information on positive mental health development; self-determination; ADLs, instrumental ADLs, play, and leisure occupations for children, adolescents, and adults; person-centered planning for adolescents and adults; and rest and sleep. Information on health management is also provided. Positionality Statement: This article uses the identity-first language autistic people. This nonableist language describes their strengths and abilities and is a conscious decision. This language is favored by autistic communities and self-advocates and has been adopted by health care professionals and researchers (Bottema-Beutel etal., 2021; Kenny etal., 2016). However, we respect the use of person-first language and have made a conscious decision to include research articles that have used this language.

Évaluation et prise en charge du psychotrauma complexe chez l’enfant et l’adolescent : présentation d’un dispositif expérimental

Recent public mental health policies on psychotrauma call for the development of research and information aimed at the general public, as well as the creation of new tools to improve the assessment and care of people suffering from the impact of traumatic events. There are also recommendations that these aspects be broken down according to age group (child and adolescent/adult) and conditions of exposure to the traumatic event (simple/complex). The establishment of the psychotherapies, psychotrauma and resilience unit (U2PR) at the university hospital service for child and adolescent psychiatry (SHUPEA) in Brest, France, is based on an experimental approach to treating complex psychotrauma in children and adolescents, focusing on three recommended areas (care, prevention, research). This article sets out its foundations, with the aim of contributing to exchanges with other professionals and services involved in supporting children and adolescents in distress. It describes the project's internal workings, its links with care partners in the departmental medical-social network, the socio-political motives behind the project, the reflections arising from group work, and the theoretical-clinical basis that strategically structures the implementation of its axes.

Using Patient and Care Partner Perspectives to Optimize Rehabilitation in Advanced Heart Failure

Using Patient and Care Partner Perspectives to Optimize Rehabilitation in Advanced Heart Failure

Development of a Bereaved Care Partner Survey to Capture the ALS Supportive Care Experience

Development of a Bereaved Care Partner Survey to Capture the ALS Supportive Care Experience

A Community-Based Nephrology and Palliative Care Partnership to Improve Advanced Chronic Kidney Disease Care

A Community-Based Nephrology and Palliative Care Partnership to Improve Advanced Chronic Kidney Disease Care

“Somebody Hug the Interpreter”: Enhancing Pediatric Palliative Care Partnership with Medical Interpreters

“Somebody Hug the Interpreter”: Enhancing Pediatric Palliative Care Partnership with Medical Interpreters

"WOOP is my safe haven": A qualitative feasibility and acceptability study of the Wish Outcome Obstacle Plan (WOOP) intervention for spouses of people living with early-stage dementia.

As symptoms emerge and worsen in people living with dementia, their spouses can benefit from behavioral interventions to support their adjustment as a care partner. The Wish Outcome Obstacle Plan (WOOP) intervention improves the well-being of spouses of people living with dementia early in the disease course, but intervention mechanisms and opportunities for improvement are unclear. The present study gave voice to spouses who participated in a trial of WOOP, describing how WOOP was incorporated into their lives and how it could be improved for future implementation. For this qualitative study, we conducted longitudinal semi-structured interviews among 21 spouses of people living with dementia (three interviews over three months; 63 interviews total). Codebook thematic analysis was performed. Three meta-themes were derived: (1) assessing baseline strengths and limitations of WOOP, (2) learning from experience, and (3) fine-tuning and sustaining WOOP. Participants described how WOOP addressed their interpersonal and emotional stressors, their responses to behaviors of the person living with dementia, and their relationship quality. Considerations for future intervention delivery (e.g., solo vs. in group settings) and instructions (e.g., encouraging writing vs. thinking through the four steps of WOOP) were identified as areas of improvement. WOOP was described as a practical, feasible, and desirable intervention for spouses at the early stages of their partner's dementia. Participants made WOOP easier to incorporate in their everyday lives by adapting the design into a mental exercise that they used as needed. Suggestions from participants specified how to make the everyday use of WOOP more feasible, sustainable, and applicable in a variety of contexts. ClinicalTrials.gov HIC 2000021852.

Design of an interdisciplinary training program for interprofessional collaboration in health and social services in patient partnership: contribution of an empowering approach reinforced by instructional design

Interprofessional education (IPE) has been a key area of research and teaching practice for the past twenty years in both university and practice settings in the health sciences and social psychology. IPE training opportunities arise when students from multiple health professions interactively learn together about interprofessional collaboration and how to improve care outcomes for the community at large. It has been proven that the design of care is of higher quality when healthcare professionals understand each other's respective roles, facilitating their communication and teamwork. However, this type of pedagogical approach to interdisciplinary training is fraught with problems, such as communication barriers, synchronization of schedules and logistics, as well as the compartmentalization of professions, which can lead to prejudice despite the educational efforts made. What's more, these courses are attended by large cohorts of initial university trainees, and their pedagogical design may lack authentic anchors, thus diminishing the ability of individuals to mobilize interprofessional collaboration in care partnerships. This article proposes a theoretical model based on an enhanced capability approach, including the use of pedagogical design for student success, to design this type of training by overcoming.

Plain Language Summary: Age-Related Hearing Loss.

The plain language summary explains age-related hearing loss to patients, families, and care partners. The summary is for any patient aged 50 years and older, families, and care partners. It is based on the 2024 "Clinical Practice Guideline: Age-Related Hearing Loss." This plain language summary is a companion publication to the full guideline, which provides greater detail for clinicians. Guidelines and their recommendations may not apply to every patient, but they can be used to find best practices and quality improvement opportunities.