How both positive and burdensome caregiver experiences are associated with care recipient cognitive performance: Evidence from the National Health and Aging Trends Study and National Study of Caregiving.

Introduction: Being an informal caregiver to a person with chronic disease, including persons living with dementia (PLWD), is a big role to take on and many caregivers experience both substantial burden and emotional reward related to caregiving. Care recipient factors (e.g., behavioral symptoms) are associated with caregiver experience. However, the relationship between caregiver and care recipient is bidirectional, so it is likely that caregiver factors impact the care recipient, though few studies have investigated this. Methods: In the 2017 round of the National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC), we studied 1,210 care dyads--170 PLWD dyads and 1,040 without dementia dyads. Care recipients completed immediate and delayed word list memory tasks, the Clock Drawing Test, and a self-rated memory rating, while caregivers were interviewed about their caregiving experiences using a 34-item questionnaire. Using principal component analysis, we created a caregiver experience score with three components-Practical Care Burden, Positive Care Experiences, and Emotional Care Burden. We then investigated the cross-sectional association between caregiver experience components and care recipient cognitive test performance using linear regression models adjusted for age, sex, education, race, and depressive and anxiety symptoms. Results: Among PLWD dyads, a higher caregiver Positive Care Experiences score was associated with better care recipient performance on the delayed word recall (B = 0.20, 95% CI 0.05, 0.36) and Clock Draw (B = 0.12, 95% CI 0.01, 0.24) tests while higher Emotional Care Burden score was associated with worse self-rated memory score (B = -0.19, 95% CI -0.39, -0.003). Among participants without dementia, higher Practical Care Burden score was associated with poorer care recipient performance on the immediate (B = -0.07, 95% CI -0.12, -0.01) and delayed (B = -0.10, 95% CI -0.16, -0.05) word recall tests. Discussion: These findings support the concept that caregiving is bidirectional within the dyad and that positive variables can positively impact both members of the dyad. This suggests that caregiving interventions should target the caregiver and recipient both individually and as a unit, with the goal of holistically improving outcomes for both.

Food Insufficiency, Supplemental Nutrition Assistance Program (SNAP) Status, and 9-Year Trajectory of Cognitive Function in Older Adults: The Longitudinal National Health and Aging Trends Study, 2012-2020.

BACKGROUND: Despite findings from cross-sectional studies, how food insecurity experience/Supplemental Nutrition Assistance Program (SNAP) status relates to cognitive decline over time has not been fully understood. OBJECTIVES: We aimed to investigate the longitudinal associations between food insecurity/SNAP status and cognitive function in older adults (≥65 y). METHODS: Longitudinal data from the National Health and Aging Trends Study 2012-2020 were analyzed (n = 4578, median follow-up years = 5 y). Participants reported food insecurity experience (5-item) and were classified as food sufficient (FS, no affirmative answer) and food insufficient (FI, any affirmative answer). The SNAP status was defined as SNAP participants, SNAP eligible nonparticipants (≤200% Federal Poverty Line, FPL), and SNAP ineligible nonparticipants (>200% FPL). Cognitive function was measured via validated tests in 3 domains, and the standardized domain-specific and combined cognitive function z-scores were calculated. Mixed-effect models with a random intercept were used to study how FI or SNAP status was associated with combined and domain-specific cognitive z-scores over time, adjusting for static and time-varying covariates. RESULTS: At baseline, 96.3% of the participants were FS and 3.7% were FI. In a subsample (n = 2832), 10.8% were SNAP participants, 30.7% were SNAP eligible nonparticipants, and 58.6% were SNAP ineligible nonparticipants. Compared with the FS group in the adjusted model (FI vs. FS), FI was associated with faster decline in the combined cognitive function scores [-0.043 (-0.055, -0.032) vs. -0.033 (-0.035, -0.031) z-scores per year, P-interaction = 0.064]. Cognitive decline rates (z-scores per year) in the combined score were similar in SNAP participants (ß = -0.030; 95% CI: -0.038, -0.022) and SNAP ineligible nonparticipants (ß = -0.028; 95% CI: -0.032, -0.024), both of which were slower than the rate in SNAP eligible nonparticipants (ß = -0.043; 95% CI: -0.048, -0.038; P-interaction < 0.0001). CONCLUSIONS: Food sufficiency and SNAP participation may be protective factors preventing accelerated cognitive decline in older adults.

Consent during labour and birth as observed by midwifery students: A mixed methods study.

BACKGROUND: While consent is an integral part of respectful maternity care, how this is obtained during labour and birth presents conflicting understandings between midwives' and women's experiences. Midwifery students are well placed to observe interactions between women and midwives during the consent process. AIM: The purpose of this study was to explore the observations and experiences of final year midwifery students of how midwives obtain consent during labour and birth. METHODS: An online survey was distributed via universities and social media to final year midwifery students across Australia. Likert scale questions based on the principles of informed consent (indications, outcomes, risks, alternatives, and voluntariness) were posed for intrapartum care in general and for specific clinical procedures. Students could also record verbal descriptions of their observations via the survey app. Recorded responses were analysed thematically. FINDINGS: 225 students responded with 195 completed surveys; 20 students provided audio recorded data. Student's observations suggested that the consent process varied considerably depending on the clinical procedure. Discussions of risks and alternatives during labour were frequently omitted. DISCUSSION: The student's accounts suggest that in many instances during labour and birth the principles of informed consent are not being applied consistently. Presenting interventions as routine care subverted choice for women in favour of the midwives' preferences. CONCLUSIONS: Consent during labour and birth is invalidated by a lack of disclosure of risks and alternatives. Health and education institutions should include information in guidelines, theoretical and practice training on minimum consent standards for specific procedures inclusive of risks and alternatives.

A Comparison of the Timing of Hand Expressing of Human Milk With Breast Massage to Standard Care for Mothers of Preterm Infants: An Exploratory Pilot Using a Randomized Controlled Design.

BACKGROUND: Globally, 10% of all births are preterm. Access to human milk via manual breast expression is required to reduce the incidence of adverse outcomes related to prematurity. However, there is little evidence to recommend optimum timing to commence breast expression in mothers of preterm infants or the most effective method. RESEARCH AIMS: (1) To test feasibility of recruitment and compliance to the protocol and (2) to determine influence of using hand expressing and breast massage on milk production, engorgement, mastitis, and breastfeeding status at 3 months. METHODS: This study was an exploratory parallel two-group, pilot randomized controlled trial. Mothers of preterm infants at a metropolitan maternity hospital in Queensland Australia (N = 31) were randomized to receive either hand expressing and breast massage within the 1st hr of birth or standard care, hand expressing within 6 hr of birth, to determine the influence on milk production, engorgement, mastitis, and breastfeeding status at 3 months. RESULTS: Feasibility targets were not met; however, valuable learning from this trial uncovered barriers facing midwives in the birth suite to commencing expressing in the 1st hr of birth. There was no difference in occurrence of secondary outcomes, although trends support future study. CONCLUSIONS: Overall, unpredictability of preterm birth influenced our ability to recruit participants. Important directions for future study design would benefit from incorporating expressing times up to 6 hr with a replicable breast massage.

Midwives experiences of interventions to improve breast expression following preterm birth: A qualitative study.

OBJECTIVE: Preterm birth impacts approximately 10% of women globally. Midwives are often the first point of care after the birth of a preterm infant providing mothers with information and support for breast expression. However, despite guidelines that suggest expression within the first hour of birth, most first expressions occur much later. This study aimed to seek an understanding of midwives' experiences with the first expression for mothers of preterm infants, including the barriers and facilitators that midwives may face. DESIGN: A qualitative design using semi-structured interviews via focus groups. Thematic analysis was used to identify relevant themes and sub-themes. PARTICIPANTS: Participants included midwives providing care to women in preterm labour and birth at a tertiary maternity hospital in Australia (N=12). All participating midwives cared for mothers of preterm infants between 28 and 35 weeks' gestation up to six hours following birth. FINDINGS: Two major themes resulted from the data, including the changing expectations of infant feeding and the responsibility versus expectation to support a woman to express in the first hour of birth with other competing clinical and organisational tasks. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Whilst individual philosophies on the benefits of human milk were positive, expressing in the birth suite was dictated by essential clinical tasks and by the institutions value placed on expressing in the first hour. Clear objectives to undertake expressing within the first hour or within the birth suite stay, need to be included in policy and supported by management and team leaders, to increase early expressing rates.

Positive Aspects of Caregiving Are Associated With Lower Risk of Frailty and Sleep Disruption in the National Study of Caregiving.

Background and Objectives: Older adult caregivers have compounded risk for adverse health outcomes; however, evidence investigating the association between caregiving and frailty has been limited. In the National Study of Caregiving (NSOC), we examined the cross-sectional association between caregiving experiences and frailty and sleep disruption. Research Design and Methods: We included 621 caregivers aged 65 and older from the 2011 NSOC round. They completed a phone interview, including 36 items about caregiving. Using principal component analysis, we identified 3 caregiving components: general burden, positive emotions, and financial-led burden. Frailty was assessed via low energy, shrinking, weakness, reduced activity, and poor self-rated health. Sleep disruption was assessed with 2 questions regarding sleep interruption and trouble falling back asleep. Results: In models adjusted for age, sex, education, depression and anxiety symptoms, and medical conditions, positive emotions were associated with a reduced relative risk of frailty (relative risk [RR] = 0.94, 95% confidence interval [CI] 0.90, 0.99) while general burden (proportional odds ratio [POR] = 1.96, 95% CI 1.30, 2.93) and financial-led burden (POR = 1.94, 95% CI 1.22, 3.06) were associated with sleep interruption. Discussion and Implications: Caregiver burden was associated with increased frailty and sleep interruption. Positive emotions were associated with decreased frailty risk. Interventions aimed at reducing the burden and increasing positive emotions in caregivers may improve frailty outcomes.

Late effects care for childhood brain Tumor Survivors: A Quality-Improvement Initiative.

Childhood and adolescent brain tumor survivors are at risk for long-term consequences of therapy. We reviewed adherence to long-term follow-up (LTFU) guidelines, assessed provider perspectives, and studied the needs, experience and quality of life (QOL) of pediatric malignant brain tumor survivors in the McMaster Children's Hospital Neuro-Oncology clinic. LTFU areas for improvement were evaluated using an anonymous health provider needs assessment questionnaire. The Cancer Care Experience Questionnaire (CCEQ), Cancer Worry Scale (CWS), Self-Management Skills Scale (SMSS), and PedsQL measured parents/patients' needs and QOL. Individual care plans were based on the Children's Oncology Group (COG) LTFU guidelines. Based on 17 responses, staff perceived areas for improvement included: increased multi-disciplinary participation, improved patient education and increased surveillance for therapy-related late effects. Thirty-two families participated, most felt they received high-quality care. Mean cancer worry scores were low (71.8 (± 28.4)). Survivors reported limited self-management skills (58.5 (±18.2)), requiring support with medical needs and activities of daily living. Overall median QOL scores were 'good' (parental report 72.3 (±17.7), survivor 68.2 (±16.6)). Utilizing survivorship guidelines and assessments from patients, caregivers and health providers, we implemented improvements in our provision of neuro-oncology survivorship care. Lessons learned may assist other LTFU programs.

Effectiveness of breast massage for the treatment of women with breastfeeding problems: a systematic review.

OBJECTIVES: The aim of this systematic review was to identify the effectiveness of breast massage as a treatment for women with breastfeeding problems. More specifically, the objective was to identify if breast massage as an intervention led to less pain or increased milk supply, or assisted in a reduction or resolution of blocked ducts, breast engorgement and mastitis. INTRODUCTION: Breastfeeding protects babies against many illnesses, and the health benefits for women have been well documented. However, breastfeeding rates steadily drop to approximately 15% by six months, which is the World Health Organization's recommended length of time for exclusive breastfeeding. Breastfeeding problems such as blocked ducts, breast engorgement and mastitis are major complications attributing to the decline in breastfeeding rates. Breast massage may relieve pain and resolve symptoms associated with conditions that contribute to discontinued breastfeeding. INCLUSION CRITERIA: This review considered both experimental and epidemiological study designs and included breastfeeding women of any age, parity or geographical location. The types of interventions considered for inclusion were any type of breast massage that was offered to women for breastfeeding problems. Comparators included the usual care provided to women with breastfeeding problems. Primary outcomes of interest were an increase in breast milk supply, reduction of breast pain, and symptom resolution of blocked ducts, engorgement and mastitis. Secondary outcomes included duration of breastfeeding. METHODS: Studies published from 1980 to 2017 in English and Japanese were considered for inclusion in this review. The databases searched with the majority of results included CINAHL, Cochrane Library, Embase, PubMed, Science Direct, Scopus and Web of Science. Search for unpublished studies included Google Scholar, ClinicalTrials.gov and ProQuest Dissertations and Theses. RESULTS: There were six studies included in this review: three randomized controlled trials and three quasi-experimental studies. There was considerable heterogeneity of study outcome measures, and the use of unvalidated tools in many of the studies led to the inability to pool the results. Furthermore, the heterogeneity of the interventions themselves coupled with small sample sizes for each study greatly decreased generalizability of the outcomes and reduced the overall effectiveness of the interventions. However, all included studies reported a reduction in pain regardless of the breast massage technique used. Overall, varying types of breast massage were helpful in reducing immediate pain and resolving symptoms. CONCLUSIONS: Overall, different types of breast massage were reported as effective in reducing immediate pain for the participants. However, the lack of detailed explanation of the breast massage technique and the extensive training needed to undertake the breast massage decrease the ability to replicate the results. These outcomes may be useful for healthcare professionals caring for women with breastfeeding problems. Future research needs include validating a universal measurement tool for breastfeeding problems and the need for more robust randomized controlled trials, particularly in vulnerable groups such as mothers of preterm infants. Longer follow-up periods are also suggested to establish if breast massage impacts breastfeeding duration.

The Impact of Physical Activity on the Health of Young Adult Survivors of Childhood Cancer: An Exploratory Analysis.

Purpose: Physical activity (PA) habits of young adult survivors of childhood cancer (SCC) have not been well-characterized, and it is unclear whether PA has a relationship with the health status of young adult SCC. The objective of this study was to determine PA participation of young adult SCC and examine associations between PA participation and late adverse effects of treatment. Methods: A retrospective chart review, including SCC enrolled in the McMaster AfterCare program, was performed. Patient characteristics, health outcomes, and PA information were abstracted. Multivariable logistic regression models were used to examine associations in this exploratory analysis. Results: We identified 253 young adult SCC, 240 of whom had sufficient information on PA participation to determine a Leisure Score Index (LSI). Of these, 45% reported adequate PA (LSI ≥24) and 26% reported no PA (LSI = 0). Significant associations between PA and bone mineral density (p = 0.03), blood pressure (p = 0.04), triglycerides (p = 0.05), and high-density lipoprotein cholesterol (p < 0.01) were demonstrated. Conclusions: The majority of young adult SCC in this cohort reported inadequate PA, despite ongoing healthy active living counseling. We identified associations between PA and bone mineral density as well as lipid profile in this group, which suggest that PA may mitigate risk of sequelae of cancer treatment. Strategies to improve young adult SCC engagement in PA are required.

Do people with Alzheimer's disease improve with repeated testing? Unpacking the role of content and context in retest effects.

Objective: retest effects may be attributed to 'repeated content' in neuropsychological tests such as words in word list-learning tests, or the 'testing context' which involves procedural memory and reduced test anxiety following repeated administration. Alzheimer's Disease (AD) severely impairs episodic memory, so longitudinal cognitive testing among people with dementia may reveal the relative contributions of content versus context to retest effects in neuropsychological testing. Method: we used data from the Critical Path Institute's repository of placebo arm data from randomized controlled trials (RCTs) of dementia conducted by participating pharmaceutical companies (N = 990 people, 4,170 study visits, up to 2.4 years of follow-up). To estimate retest effects on the Mini-Mental State Examination (MMSE), we used linear regressions with random effects for people and time, adjusting for age, sex and race, and longitudinal quantile regressions. Results: average MMSE score (16.6 points, SD = 5.5, range 1, 27) declined by 2.0 points/year (95% confidence interval, CI: -2.3, -1.8). Mean retest effect was 0.6 points (95% CI: 0.4, 0.8) at second assessment (average 4 months after baseline). Retest effects were similar among participants with and without any recall on the short-delay word recall subscale score at baseline, and at the 30th, 50th and 70th percentiles of the MMSE distribution, suggesting similar retest effects across the spectrum from mild to severe cases of dementia. Conclusions: retest effects are apparent in people with dementia despite reduced episodic memory, suggesting a prominent role of the testing context in RCTs and cohort studies.

Evaluation of a joint adult and pediatric clinic for cancer survivorship care.

OBJECTIVES: The best model of care for long-term follow-up of survivors of childhood cancer is uncertain. We describe the care experience provided by the joint adult/pediatric AfterCare Clinic at the McMaster Children's Hospital. Secondary outcomes include an evaluation of cancer worry, self-management skills, and loss to follow-up rates. METHODS: AfterCare Clinic patients aged 19-29 years were approached for study participation between January and March 2016. Data were collected from a cross-sectional survey, consisting of the Cancer Care Experience Questionnaire (CCEQ), Cancer Worry Scale (CWS), and Self-Management Skills Scale (SMSS). Responses were analyzed using descriptive statistics. RESULTS: Seventy-three (40%) patients participated in the survey, 17 (23%) anonymously. Demographic characteristics of the nonanonymous participants were representative of the total clinic cohort. Most respondents were satisfied with the quality of care and anticipatory guidance provided, demonstrated by the CCEQ responses. Respondents had a high degree of cancer worries (mean score 50.6 [±18.4]), but good self-management skills (72.0 [±10.9]). Our 5-year loss to follow-up rate was 3.8%. Sensitivity analyses showed no difference in responses between the total cohort and the nonanonymous participants. CONCLUSIONS: This sample of young adult survivors of childhood cancer had a higher degree of cancer worries and higher self-management skills scores than a younger cohort of survivors of childhood cancer in the literature. Given this, along with the positive care experience reported, and the low loss to follow-up rate, the joint adult/pediatric model of survivorship care appears to be meeting the needs of this population.

Physical Activity in Long-term Survivors of Acute Lymphoblastic Leukemia in Childhood and Adolescence: A Cross-sectional Cohort Study.

Inadequate physical activity (PA) and elevated overweight/obesity (OW/OB) rates are common in survivors of cancer in childhood, especially acute lymphoblastic leukemia (ALL). Bony morbidity, including fractures, is also prevalent among survivors of ALL. This study examined the interrelationships of PA, measured in hours by the Habitual Activity Estimation Scale; OW/OG, defined by body mass index; and fractures (yes/no) in survivors of ALL (n=75) more than 10 years after diagnosis. All had been treated using protocols of the Dana Farber Cancer Institute Childhood ALL Consortium. The median age was 21.15 years and time from diagnosis 15.07 years, and 27 subjects had experienced fractures. More than 30% of the total sample were OW/OB. There was no correlation of body mass index with present PA. There were no significant differences between those with/without fractures in terms of age, sex, time from diagnosis, and the prevalence of OW/OB. Subjects with fractures during treatment reported more total activity on typical weekend days than those without fractures (mean 8.8 vs. 6.9 h, P<0.01). There was no significant difference on weekdays. Higher activity on weekends suggests that fractures may have occurred more commonly in those who had a more active lifestyle before, during, and after treatment.

Implementation of an education package on breast engorgement aimed at lactation consultants and midwives to prevent conflicting information for postnatal mothers.

AIM: The aim of this evidence-based practice project was to improve local practice in the treatment of breast engorgement in postnatal mothers and to ensure the treatment of engorgement in postnatal mothers is performed according to the best available evidence. METHODS: This evidence-based practice project took place in a 28-bed postnatal ward in a large metropolitan tertiary hospital. Twenty midwives and 20 in-patients were recruited for the project. The project utilized an audit and feedback design. Midwives were asked a series of questions to test their knowledge on engorgement, and mothers were asked questions relating to the breastfeeding and engorgement care they received. The project was conducted in three phases: preparation for quality audit, implementation of best practice and postimplementation audit. RESULTS: Comparison of Audit 1 (preimplementation) and Audit 2 (postimplementation) results shows significant improvements in all eight audit criteria. An increase of 80% was achieved for the criteria 'midwives received formal education on engorgement' on completion of the project. A 20% increase in 'consistency of education regarding latch' was reported by the mothers, and there was a 30% increase in 'information given to mothers on prevention and signs of engorgement'. Sixty-five percent of midwives were able to correctly identify and manage engorgement, a significant improvement from 5% at baseline. CONCLUSION: This evidence-based practice project successfully identified and utilized best practice in the management of breast engorgement care in mothers in our clinical setting. With effective breast engorgement interventions in place, mothers could continue to successfully breastfeed their babies. The major challenges identified during the conduct of the project included: time constraints on the midwives to attend education sessions and to educate mothers on prevention. At the completion of this project, a closer relationship was forged between the lactation consultant team and the midwives in the project setting. This increased the satisfaction and productivity of the midwives, and motivated them to deliver high-quality care, which contributed to an improvement in mother's confidence and reduction in conflicting information.

Effectiveness of breast massage in the treatment of women with breastfeeding problems: a systematic review protocol.

REVIEW QUESTION/OBJECTIVE: The aim is to identify the effectiveness of breast massage in the treatment of women with breastfeeding problems. The objectives are to identify if breast massage has been shown to.

Long-Term Social Outcomes of Hyperfractionated Radiation on Childhood ALL Survivors.

BACKGROUND/OBJECTIVES: Childhood cranial radiation has irreversible neurocognitive effects. Hyperfractionated radiation therapy (HFX) for acute lymphoblastic leukemia (ALL) was randomized against conventionally fractionated radiation therapy (CFX) in the DFCI 87-01/91-01 trials attempting to minimize these effects. When neurocognitive testing 8-year posttreatment demonstrated no difference, this strategy was abandoned. The objective of this study was to evaluate late social outcomes among patients who received HFX compared to CFX as part of the DFCI 87-01/91-01 trials. METHODS: This retrospective chart review examined all patients treated according to the DFCI 87-01/91-01 trials at the McMaster Children's Hospital in Hamilton, Canada. Patients <18 years at diagnosis and who have attended follow-up clinic since January 1, 2000 were included in this study. Social outcomes and IQ test results were examined for trends. Demographics and outcomes were presented with descriptive statistics. RESULTS: We identified 57 DFCI 87-01/91-01 trial participants: 14 received HFX, 29 received CFX, and 14 received no radiation. There were no demographic differences between the groups. HFX survivors were more likely to be living independently (64% vs. 28%, P = 0.02) and engaged in long-term relationships (57% vs. 25%, P = 0.04) than CFX. Nonsignificant trends suggested that HFX survivors may be more financially independent, employed full-time, had fewer educational difficulties in school, and higher scores on neuropsychological testing. Data trends, although not significant, persisted in logistic regression analysis when accounting for age. CONCLUSION: Long-term social outcomes were better among ALL survivors who received HFX than CFX. A wider study involving all patients enrolled on DFCI 87-01/91-01 protocols should be conducted to reconsider radiation protocols for ALL.