Caregiver Time Research Articles

Fall Prevention Education Co-Designed and Evaluated with Community-Dwelling Older People Living with Dementia and Their Caregivers: A Feasibility Study

Community-dwelling older people living with dementia are at increased risk of falls and injury that may impact their ability to remain at home. Fall prevention education programs have been effective in reducing falling risks in other older populations, but few studies have reported on programs specifically co-designed with this vulnerable cohort. This study partnered with community-dwelling older people living with dementia and their caregivers to co-design a fall prevention education program and evaluate its feasibility. A two-phase, mixed methods design using a community-based participatory research approach was conducted. A co-designed multimedia suite of 16 evidence-based safety messages (screened video, paper brochures), delivered by staff with support from caregivers, was evaluated using pre-and postprogram consumer engagement panels (clients, n = 4 and staff, n = 4), pre-and post-program client and caregiver (n = 18) surveys, and semi-structured educator staff interviews (n = 2). Quantitative data were analysed using Wilcoxon signed-rank tests and qualitative findings were subjected to deductive content analysis and were mapped to known feasibility criteria. Safety messages were positively received, card format delivery was preferred to video, and use of rhymes were fun and engaging. Following the program, older people felt they had a significantly clearer plan to help them prevent falling ( p = 0.01). Caregivers who were invested in the program facilitated successful implementation and perceived that the program reduced their concerns about the person they cared for falling. Making the program available at an earlier stage (closer to diagnosis) was deemed preferable for a greater impact. Staff time for engagement and caregivers feeling uncomfortable with technology were two identified threats to implementation. Co-designing and evaluating a fall prevention education program with older people living with dementia, their caregivers, and staff were feasible. Safety messages clarified older peoples’ awareness of how to prevent falls and alleviated caregiver concerns. Education on falling may assist older people living with dementia to remain safe at home.

Parental supporter during pediatric resuscitation: Qualitative exploration of caregivers' and healthcare professionals' experiences and perceptions

BackgroundChild resuscitation is a critical and stressful time for family caregivers and healthcare professionals. The aim of this study was to explore caregivers’ and healthcare professionals’ experiences and perceptions of a parental supporter during pediatric cardiopulmonary resuscitation to provide guidance to healthcare professionals on supporting parents and other family caregivers during resuscitation. MethodsThis study used an exploratory descriptive qualitative approach. The setting was two large referral pediatric governmental hospitals. Participants were 17 caregivers who had experienced their child’s resuscitation, and 13 healthcare professionals who served on resuscitation teams in emergency rooms or intensive care wards. Semi-structured, in-depth interviews were conducted and data were analyzed using thematic analysis. COREQ guidelines were followed. ResultsParticipants shared their experiences and perceptions of a parental supporter during pediatric resuscitation in three themes: 1) Requirement for the presence of a parental supporter, 2) Expectations of the parental supporter, and 3) Characteristics of the parental supporter. ConclusionsStudy findings highlight the need for a parental supporter during pediatric resuscitation; however, there is no defined parental supporter role in current guiding policies due to limited research on this role. More research on the parental supporter role is needed so effective policies and protocols can be developed to enhance family-centered care practices in pediatric emergency and acute care settings.

Formal and informal healthcare utilization in MCI and mild dementia due to AD: Cross‐sectional and longitudinal analyses of RUD‐Lite data from the Tauriel Study

AbstractBackgroundThe Resource Utilization in Dementia‐Lite (RUD‐Lite) scale measures both formal healthcare utilization and informal caregiver time required by individuals with cognitive impairment. The RUD‐Lite has been incorporated into multiple observational and interventional studies of participants with Alzheimer’s disease (AD) dementia of varying severity. However, RUD‐Lite data for earlier stages of AD such as mild cognitive impairment (MCI) is limited and is primarily from observational studies. As healthcare utilization may differ between participants in observational versus interventional studies, we analyzed data from the Tauriel study of semorinemab in MCI and mild dementia due to AD (NCT03289143).MethodsWe performed cross‐sectional and longitudinal RUD‐Lite comparisons between MCI (n = 160) and mild dementia (n = 288) cohorts of the Tauriel study, exploring formal healthcare usage (hospital admissions, emergency department visits, outpatient visits, and ancillary services) and informal caregiver time for assistance with basic (BADLs) and instrumental (IADLs) activities of daily living and participant supervision. Both unadjusted and adjusted (for baseline usage, age, sex) analyses were performed on longitudinal data.ResultsBaseline cross‐sectional analyses (Table 1) indicated that mild dementia participants required significantly greater caregiver time for assistance with IADLs than MCI participants. Other formal and informal healthcare utilization indices did not differ between groups. Unadjusted longitudinal analyses across 18 months (Figure 1) revealed significant increases in informal caregiver assistance with BADLs (MCI:+40%, mild dementia:+231%), IADLs (MCI:+31%, mild dementia:+34%), and supervision (mild dementia:+219%) and in ancillary service usage (mild dementia:+345%). Adjusted longitudinal analyses (Figure 2) revealed significantly greater increases in mild dementia versus MCI for assistance time with BADLs, IADLs, and supervision.ConclusionInformal caregiver time spent providing assistance in early AD increases with disease severity and longitudinal changes are detectable in MCI over 18 months. Formal healthcare utilization indices were less sensitive to disease progression. While the RUD‐Lite results from this interventional study are consistent with observational data from analogous populations, less caregiver assistance time was reported in our cohort. When using RUD‐Lite outcomes in future early AD studies, investigators may need to account for their participant population (e.g., observational versus interventional) in their study design.

A Dyadic Behavioral Sleep Intervention Program for Persons Living With Dementia and Their Family Caregivers: A Pilot Randomized Controlled Trial

AbstractBackgroundUntreated sleep problems in persons living with dementia (PLWD) and their caregivers impact health outcomes of both individuals and impair quality of care for caregivers. This study pilot tested preliminary effects of a dyadic sleep intervention program among this group.MethodThirty PLWD/caregiver dyads were randomized to a 5‐session treatment (n = 15 dyads) or a similarly structured information‐only control group (n = 15 dyads) via in‐person or video‐telehealth. Treatment was a manual‐based program incorporating key components of cognitive behavioral therapy for insomnia (CBTI), daily light exposure and walking, and a problem‐solving approach for dementia‐related behaviors and caregiving challenges. Sleep outcomes included actigraphy‐measured sleep efficiency (SE) and total awake time (TWT) at night for dyads, and Pittsburgh Sleep Quality Index (PSQI) for caregivers. Outcomes were measured at baseline, post‐treatment, and 3‐months follow‐up (main outcome time point). Recommendation adherence in the treatment group was computed and a 2 (group) by 3 (time) mixed model analysis of variance was used to test the treatment effects (p<0.20 as the threshold).ResultTwo dyads in treatment and one control dyad did not complete all five sessions. Of 13 dyads who completed all sessions of the treatment program, average % days that the dyads met their sleep schedules were 76% bedtime and 83% get‐up time for PLWD and 81% bedtime and 68% get‐up time for caregivers. From baseline to 3‐month follow‐up, SE increased by 3.2% more for PLWD in the treatment group (n = 9) compared to control (n = 9, p = 0.48) and by 3.7% more for caregivers in the treatment group (n = 12) compared to control (n = 9, p = 0.17). TWT also reduced by 19 minutes more for PLWD and 14 minutes more for caregivers in the treatment group compared to control at the 3‐month follow‐up although this was not statistically significant. Caregivers in treatment also showed non‐significant improvement on the PSQI (p>0.20).ConclusionA dyadic approach to sleep improvement showed evidence of benefit among PLWD and caregivers. A larger study is needed to fully evaluate these effects and compare in‐person to telehealth modalities.

Virtual Respite for Family Caregivers

AbstractBackgroundThere are over 11 million family caregivers to individuals living with Alzheimer’s in the U.S. The risk of caregiver burden and the inaccessibility of institutional respite create a need for in‐home respite programs. This proof of concept study examined the feasibility of an in‐home virtual respite program.MethodFamily caregivers of individuals with mild dementia received up to six student delivered in‐home virtual respite visits over two months. Semi‐structured interviews were conducted with family caregivers and student participants following the visits. The qualitative data were analyzed using thematic analysis with three coders.ResultFamily caregivers reported that the virtual respite program allowed time to engage in self‐care activities such as rest, exercise, and social interaction.ConclusionThis novel intervention freed time for family caregivers to receive respite in a virtual format. A future randomized trial is needed to estimate the effect of the intervention on psychosocial and clinical outcomes.

Virtual Respite for Family Caregivers

AbstractBackgroundThere are over 11 million family caregivers to individuals living with Alzheimer’s in the U.S. The risk of caregiver burden and the inaccessibility of institutional respite create a need for in‐home respite programs. This proof of concept study examined the feasibility of an in‐home virtual respite program.MethodFamily caregivers of individuals with mild dementia received up to six student delivered in‐home virtual respite visits over two months. Semi‐structured interviews were conducted with family caregivers and student participants following the visits. The qualitative data were analyzed using thematic analysis with three coders.ResultFamily caregivers reported that the virtual respite program allowed time to engage in self‐care activities such as rest, exercise, and social interaction.ConclusionThis novel intervention freed time for family caregivers to receive respite in a virtual format. A future randomized trial is needed to estimate the effect of the intervention on psychosocial and clinical outcomes.

Impact of COVID-19 visitation policies and hospital capacity on discharge readiness in medicine patients

BackgroundCOVID-19 impacted the experience of being hospitalized with the widespread adoption of strict visitation policies to ensure healthcare worker safety. One result was decreased time of caregivers at the bedside of hospitalized patients.ObjectiveTo understand the impact of pandemic-related system effects on patient-reported discharge preparation.DesignThis mixed methods study included interviews with a sample of discharged patients during April 2020, and quantitative hospital data from April 2020 to February 2021.Participants616 patients completed a measure of discharge readiness on their day of discharge and 38 patients completed interviews about their discharge experiences.Main measuresReadiness for discharge (RHDS), visitation policies, ward structure changes, COVID-19-unit census, time into the COVID-19 pandemic, patient characteristics (age, sex, race/ethnicity), admission type (planned/unplanned, for COVID-19), and discharge destination (home, home health, skilled nursing).Key resultsAdult patients aged 30–45 (vs. young and older adult patients) and those being discharged to places other than home (e.g., skilled nursing facility) or to out-of-state residences report lower readiness (p < 0.05) on RHDS. Patient interviews revealed some gaps in discharge communication but, overall, patients expressed high discharge readiness and few concerns about how COVID-19 system changes impacted their discharge preparation.ConclusionsWhile there is some evidence that visitation policies and unit census may impact patient perceptions of discharge preparation, personal characteristics contributed more significantly to discharge readiness than system changes during COVID-19. Participant interviews demonstrated agreement, as most participants were discharged home and identified strong personal feelings of readiness for discharge.Clinical trials registration: ClinicalTrials.gov ID NCT04248738, https://clinicaltrials.gov/ct2/show/NCT04248738.

The Economic Value of Caregiving in Chile

ABSTRACT Population aging will increase the demand for long-term care services. Many countries, including Chile, have not implemented comprehensive responses to address these demands, relying on informal care. This article aims to estimate the economic value of caregiving in Chile, contributing to filling a gap in the literature and the policy debate. Economic value is estimated using replacement and opportunity cost approaches using two nationally representative databases: one survey on time use (to estimate hours of caregiving) and one on socioeconomic characterization (to identify caregivers and wages). Regressions for the determinants of caregiving effort and wages in the formal labor market are used to calculate the market value of caregiving time. Results show that the yearly value of caregiving ranges between US$266 million (when assuming a wage equal to the minimum wage for all caregivers) and US$4,946 million (when replacing all caregivers with nurses), i.e. between 0.11% and 1.95% of the country’s gross domestic product. The analysis provides several estimations of the economic value of caregivers in Chile and, even considering these calculations can be underestimated, the results show the need to highlight and value the contribution of caregivers and implement policies to address the increase in long-term care needs in the country.

Caregivers of ALS Patients: Their Experiences and Needs

We explored the care experiences and needs of the home caregivers of patients with amyotrophic lateral sclerosis (ALS) to improve their quality of life. We interviewed home caregivers in-depth and analyzed the data using Colaizzi's descriptive phenomenological method. We interviewed 11 home caregivers of patients with ALS with a disease duration between 1.5 and 4 years. Primary caregivers were predominantly female and were the patients' spouses. Daily caregiving time averaged 4–14 h for 0.5–3.5 years. Interview themes included helplessness and adaptation to life changes, hopelessness, compassion for the patient’s prognosis, and expectation for diverse support. The study sample size was limited, as all participants were from a single tertiary hospital, and all patients had severe functional impairment. Caregivers of patients with ALS experience a considerable burden. Patients and their caregivers can benefit from diversified support channels, and assistive communication systems can be applied to home care. Future research will focus on in-home public long-term care services in China.

Abstract 15394: Caregivers’ Growing Contributions to Heart Failure Self-Care: An Updated Systematic Review

Introduction: In 2015, a seminal systematic review captured the body of literature surrounding the contributions of family caregivers to heart failure (HF) self-care. Since then, the body of HF caregiving research has expanded, necessitating an updated systematic review to inform research, practice, and policy. Goals: To provide an updated systematic review of the empiric literature on informal, unpaid caregivers contributions to HF patients’ self-care. Research Questions: 1) What specific activities do caregivers of people with HF take part in related to HF self-care?; 2) Have these caregiving activities changed over time?; 3) What are the gaps in the science? Methods: The review followed PRISMA guidelines; the protocol was pre-registered in PROSPERO. Comprehensive database search strategies were developed (PubMed, CINAHL, Embase, and Cochrane CENTRAL). The team independently screened and abstracted data; quality was assessed using CASP checklists. Meta-synthesis techniques using critical realist approaches were used to interpret activities, then relationships were analyzed. During data synthesis, activities were benchmarked against the Theory of Self-care in Chronic Illness (TSCI). Results: In total, 2154 research reports were identified, 64 of which were eligible for inclusion (2013-2022). Caregiver contributions to HF self-care activities occurred in TCSI domains of self-care maintenance (91%), monitoring (54%), and management (46%). Activities performed directly on or to the patient were reported more frequently than those performed for the patient. Frequently reported activities like transportation and activity of daily living are not included by the TCSI. Gaps due to ambiguous activity descriptions, inadequate caregiving time quantification, and underrepresented monitoring, supportive, and communication activities were elucidated. Conclusions: Findings support updating the TSCI to include activities antecedent to HF self-care. Identified gaps highlight the need to define specific caregiving activities, determine caregiver task difficulty and burden, and identify caregiver self-care strategy and education needs. The critical need to expose the hidden work of caregiving is essential to inform policy and practice.

Assessing the role of the quality and quantity of caregiver clinical participation on patient activation in the metastatic breast cancer setting.

312 Background: Caregivers maximize health and quality of life of individuals undergoing treatment for cancer by assisting with daily activities, managing complex care, navigating health care systems, and communicating with health care professionals. In metastatic breast cancer (MBC), caregiver roles may be more extensive due to treatment trajectories. Little is known about how caregivers participate in clinical encounters and how their roles in treatment decision-making impact patient engagement. Methods: This mixed-methods analysis explored the effect of the quantity and quality of caregiver participation at clinical encounters in women with MBC. Participation quantity was measured by calculating proportion speaking time (seconds spoken/total appointment time) for oncologists, patients, and caregivers. A summative thematic content analysis using a constant comparative method was utilized to inductively identify caregiver roles during recorded appointments. Caregiver participation quality was then operationalized as the summed number of roles displayed (0-12). Patient participation quality was assessed using the Patient Activation Measure (PAM; scored 0-100 with higher scores indicating more activation) and compared to caregiver quantity and quality of participation using Spearman’s correlations. Results: Fifty-three clinical encounters with verbal caregiver participation were recorded. Patients had a mean age of 58 (SD 10) and were predominately white (72%); demographics of caregivers were not collected. On average, encounters lasted for 30 minutes (SD 12) during which oncologists spoke for 76%, patients for 20%, and caregivers for 4% of the encounter. Identified caregiver roles included: General Support; Management of Treatment or Medication; Treatment History; Decision-Making; Insurance or Money; Pharmacy; Scheduling; Travel Concerns; General Cancer Understanding; Patient Specific Cancer Understanding; Caregiver-Initiated or Emphasis on Symptom Severity; and Caregiver Back-Up of Patient Symptom Description. Caregiver quality scores averaged 5 roles (SD 3) and patients were highly activated (M=65, SD 16). Quality [r(53) = 0.349, p=0.010] and not the quantity [r(53) = 0.213, p=0.126] of caregiver contributions were associated with higher levels of patient activation. Conclusions: Although caregiver time speaking did not impact patient activation, the more ways that the caregiver productively participated in the clinical encounter, the more activated the patient was in their care. Greater integration of the caregiver into treatment decision-making appointments could help to encourage patient engagement when developing a treatment plan for MBC.

Feasibility of the geriatric assessment in older caregivers of older adults with cancer to guide supportive care.

224 Background: Older caregivers of older patients with cancer are at high risk for adverse physical and psychological outcomes. Performing a caregiver geriatric assessment (GA) may help identify caregivers at increased risk of adverse outcomes and guide supportive care strategies. In this study, we aimed to determine the feasibility of a GA to evaluate age-related conditions, and physical and emotional health of both patients and caregivers. Methods: Caregivers aged 65+ and patients aged 65+ with diagnosis of cancer receiving a new line of cancer treatment and caregivers aged 65+ were recruited (Goal 60 dyads; current N=40). Patient and caregiver physical and emotional health was captured using the GA which included assessment of physical function (activities of daily living [ADLs], instrumental activities of daily living [IADLs], Short Physical Performance Battery [SPPB], fall history), comorbidity, psychological health (Geriatric Depression Scale [GDS], General Anxiety Disorder-7 [GAD-7]), cognition (Montreal Cognitive Assessment [MOCA] or Blessed Orientation Memory Concentration [BOMC]), Social Support (Older Americans Resources and Services [OARS] Social Support), polypharmacy, nutrition, caregiver Environmental Mastery, and Modified Caregiver Strain Index. Results: Of 40 dyads who have consented, 17 dyads (42%) completed the GA, 14 dyad GAs are pending (35%), eight have withdrawn (20%), and one was lost to follow-up (2.5%). Mean time for caregivers to complete self-reported GA assessment was 47 minutes (range 20-120 minutes) and return to study staff was 5 days (range 0-22 days). Caregivers had mean age 78 years (range 65-85), 100% white, 94% female, and 94% spouses. Caregivers had high prevalence of age-related conditions, including comorbidities (mean 3.7), impairments in ADLs (24%), IADLs (31%), and physical function (55%). More patients than caregivers screened positive for depression (29% vs 12%) and anxiety (17% vs 6%). Caregivers reported high mastery (Ryff subscale, mean 38, range 26-49) and low strain (4.4, range 0-16). Conclusions: The GA is feasible to use in older cancer caregivers to help identify aging related conditions that may influence caregiving ability. Future work should identify how GA in older cancer caregivers can be used to identify intervention strategies to optimize caregiving abilities and improve outcomes in both older adults with cancer and their caregivers. Clinical trial information: NCT05244915 .[Table: see text]

노인을 돌보는 가족돌봄자의 돌봄부담-디스트레스 관계에서 가족관계망의 감사와 지원의 효과

The purpose of this study was to examine the relationship between caregiver burden and distress among caregivers of older adults and to identify the family gratitude and family support that moderate the relationship between caregiver burden and distress. Caregiver burden was assessed based on the amount of total caregiving time (per week), the gap between the amount of actual and desired caregiving time, and the negative caregiving experiences. Family characteristics were analyzed based on social support theory and social recognition theory to investigate whether family gratitude and economic support from family members moderate the caregiver burden-stress relationship. The analysis was conducted on 501 primary caregivers for older adults from the 2018 National Survey of Family Caregiving. The results of this study are as follows: First, when controlling for other characteristics, family caregivers who reported more negative caregiving experiences (e.g. demanding care, constant surveillance, interference from others) experienced higher levels of distress when their actual caregiving time exceeded their preferred caregiving time. Secondly, primary caregivers who perceived gratitude from their families appeared lower levels of distress. Moreover, the interaction effect between caregiving time gap and acknowledgment was significant, indicating that the recognition of gratitude from family members is meaningful in moderating the distress of primary caregivers in stressful situations. Thirdly, the interaction effect between negative caregiving experiences and economic support was also significant, suggesting that the intensity of distress caused by negative caregiving experiences can be reduced through the financial support provided by family members.

소아암 아동․청소년 돌봄자의 돌봄노동 실태 및 돌봄노동 지원 욕구의 기초연구

The purpose of this study is to conduct a basic research on the current situation of care work and support needs of caregivers of children and adolescents with childhood cancer through in-depth interviews, a qualitative research method. Specifically, we conducted in-depth interviews with 12 caregivers of children and adolescents with pediatric cancer. We collected and analyzed qualitative data by asking them to fill out a daily(weekday and weekend) caregiving time and content survey questionnaire. The study showed the following results. First, the current care work status of caregivers of childhood cancer patients presented information on 1) care work intensity, 2) employment status of caregivers, 3) support network for care work, 4) care work-related costs and use of facilities to reduce the burden of care work, 5) perception of care work, 6) perception on obstacles in care work, 7) impact of excessive care work, and 8) status of daily time spent on care work and its content. Second, the results on the support needs of caregivers for care work revealed necessity to expand the social system and social support network in order to alleviate the burden of care work. Finally, we conclude with implications and suggestions for further research based on these findings.

Caregiving Time of Unpaid Family Caregivers Assisting Older Adults With Hearing Difficulty.

Objectives: We aimed to investigate the association of older adults' hearing difficulty status with caregiving time. Methods: We used data from two linked surveys of Medicare beneficiaries and family caregivers. Hearing difficulty was defined by hearing aid use and hearing capacity in functional settings. Weighted multivariable linear regression examined the association between hearing difficulty and caregiving time. Stratified analyses were conducted to investigate the moderation effects of caregiving networks and care recipient's dementia status. Results: Among 3003 caregivers, those who assisted older adults with hearing difficulty were observed to spend greater time providing care (β = 1.18, 95% Confidence Interval [CI]: 1.04, 1.32). Stronger associations in magnitude were observed among caregivers without caregiving networks (β = 1.35, 95% CI: 1.13, 1.56) and assisting older adults without dementia (β = 1.22; 95% CI = 1.06, 1.37). Discussion: Hearing difficulty may contribute to greater caregiving time and remains a potential target for caregiver support programs.

Love in the Time of Caregiving.

Love in the Time of Caregiving.

‘Ya Ondan Önce Ölürsem?' Palyatif Bakımda Bakımverenlerin Endişeleri

Background/Aims: Caregivers are family members who provide unpaid assistance to their ill spouses. In Turkey, family caregiving, engagement, and support are needed when patients are hospitalized. This study aims to better understand the feelings of caregivers behind their behaviors in a terrier palliative care setting. &#x0D; Methods: This research is a cross-sectional qualitative study designed with phenomenology. Five family caregivers who volunteered to participate were interviewed face-to-face. Inclusion criteria were adult informal caregivers who currently provided care to the patient at home and in the hospital. &#x0D; Results: The family caregivers consist of five spouses with a mean age of 44.8 ± 4.80 years. Each caregiver is a female and the spouse of the patient. Of the patients diagnosis was Alzheimer’s disease, dementia, gastric cancer, and stroke, respectively. The caregiving time was approximately 2.79 ± 1.62 years. Four themes and eleven subthemes were indicated: Concerns about themselves: Overestimating their health care problems, Anxiety about staying strong; Consequences of the patient: Remembering the patient like a “hero”; Acceptance of the situation Fear of “finding him death” Challenges about caregiving Sacrificing from life Excessive responsibility Embarrassment from diaper care Lack of orientation for caregiving at first Coping strategies Devine providence Religious beliefs. &#x0D; Conclusions: The findings of the study indicate that family caregivers have concerns about themselves and the consequences of their roles. Even if they try to cope with spirituality, healthcare providers can support them by recognizing their essential roles.

Level of knowledge and quality of life among Saudi caregivers of Parkinson’s disease patients: A study from a tertiary hospital in Riyadh, Saudi Arabia

PurposeWe aimed to assess the family caregivers’ level of knowledge and attitudes about Parkison’s disease (PD), identify factors affecting their knowledge, evaluate their quality of life (QoL) and factors influencing it and to define the effect of PD on activities of daily living (ADLs) of PD patients. MethodWe developed and validated a questionnaire to assess the level of knowledge and attitudes of family caregivers toward PD, effects of PD on caregivers’ QoL as well as its effects on activities of daily living (ADLs) of patients from the caregivers’ perspective. A scoring system was utilized and SPSS was used to evaluate the differences in responses between the groups; p < 0.05 indicated statistical significance. Results69 caregivers and their corresponding patients were included in the study. Family caregivers had a low level of knowledge, as reflected by a mean score of 3.45 out of 8. However, 62.3% were aware of all medications used by their patients. Additionally, the level of knowledge was associated with caregivers’ gender as 57.1% of the female caregivers had medium PD knowledge scores while 58.5% of the male had low scores (p = 0.038). The level of knowledge was also associated with daily caregiving hours as only 44.5% of caregivers whom spending 0–5 h/day had medium and high knowledge scores while greater proportions with same scoring levels were found among those providing care > 5 h/day (75.0% in > 5–10 hrs; 52.4% in > 10–24 hrs; p = 0.024). Most caregivers confirmed their QoL had declined, yet the male caregivers had better QoL than females (p = 0.026). Longer caregiving time was associated with decline (p = 0.016) and severe effect on QoL of caregivers (p = 0.04). ConclusionCaregivers of PD patients had a low level of knowledge. Female caregivers had significantly higher level of PD knowledge than their male counterparts. Low level of PD knowledge was significantly associated with shorter caregiving time per day. Longer caregiving time was significantly associated with a decline in caregivers’ QoL. Increasing awareness and knowledge among caregivers is necessary to ensure better treatment outcomes and improve the QoL of both caregivers and patients.

Development and testing of methods to record and follow up spells in patients with alternating hemiplegia of childhood.

Developing methods to record Alternating Hemiplegia of Childhood (AHC) spells is essential for clinical trials and patient care. Test the following hypotheses: 1) Video-library training improves participants' ability to correctly identify AHC spells. 2) A custom-designed event-calendar with weekly reviews results in consistent documentation of such events over time. 3) Use of an electronic diary (e-Diary) to register events is a useful tool. 1) A video-library of AHC type spells was developed along with specific training; the effect of the training was tested in 36 caregivers. 2) An event-calendar was similarly developed and provided to 5 caregivers with weekly videoconference meetings for 8 weeks. 3) An e-Diary was developed and offered to 33 patients; time of usage and caregivers' feedback (telephone interview) were analyzed. 1) Video-library training: Wilcoxon test showed improvement in caregiver identification of spells (p=0.047), Cohen's Kappa demonstrated high degree of agreement between caregivers'-experts' classifications (>0.9). 2) Event-calendar: 96.42% of entries had complete information; this did not change during follow up (p=0.804). 3) e-Diary: whereas 52% of respondents used the e-Diary when offered (duration: 10.5±8.1 months), 96.3% indicated they would use it in future studies. Those who used it for 13 months, were very likely to use it during the rest of that year. Video-library training improved spell identification. Calendar with weekly reviews resulted in a sustained and consistent record keeping. Caregivers' e-Diary feedback was encouraging with long-term usage in many. These approaches could be helpful for AHC and, potentially, in similar disorders.

Association Between Online Health Information-Seeking Behaviors by Caregivers and Delays in Pediatric Cancer: Mixed Methods Study in China.

Pediatric cancer patients in China often present at an advanced stage of disease resulting in lower survival and poorer health outcomes. One factor hypothesized to contribute to delays in pediatric cancer has been the online health information-seeking (OHIS) behaviors by caregivers. This study aims to examine the association between OHIS behaviors by caregivers and delays for Chinese pediatric cancer patients using a mixed methods approach. This study used a mixed methods approach, specifically a sequential explanatory design. OHIS behavior by the caregiver was defined as the way caregivers access information relevant to their children's health via the Internet. Delays in pediatric cancer were defined as any one of the following 3 types of delay: patient delay, diagnosis delay, or treatment delay. The quantitative analysis methods included descriptive analyses, Student t tests, Pearson chi-square test, and binary logistic regression analysis, all performed using Stata. The qualitative analysis methods included conceptual content analysis and the Colaizzi method. A total of 303 pediatric cancer patient-caregiver dyads was included in the quantitative survey, and 29 caregivers completed the qualitative interview. Quantitative analysis results revealed that nearly one-half (151/303, 49.8%) of patients experienced delays in pediatric cancer, and the primary type of delay was diagnosis delay (113/303, 37.3%), followed by patient delay (50/303, 16.5%) and treatment delay (24/303, 7.9%). In this study, 232 of the 303 (76.6%) caregiver participants demonstrated OHIS behaviors. When those engaged in OHIS behaviors were compared with their counterparts, the likelihood of patient delay more than doubled (odds ratio=2.21; 95% CI 1.03-4.75). Qualitative analysis results showed that caregivers' OHIS behaviors impacted the cancer care pathway by influencing caregivers' symptom appraisal before the first medical contact and caregivers' acceptance of health care providers' diagnostic and treatment decisions. Our findings suggest that OHIS among Chinese pediatric caregivers may be a risk factor for increasing the likelihood of patient delay. Our government and society should make a concerted effort to regulate online health information and improve its quality. Specialized freemium consultations provided by health care providers via online health informatic platforms are needed to shorten the time for caregivers' cancer symptom appraisal before the first medical contact.