Caregiver Perceptions Research Articles

Exploring Facilitators and Barriers to Physical Activity for Families of Rural Preschoolers Participating in a Motor Skill Program.

While schools provide one opportunity to encourage physical activity, caregivers play an exceedingly important role in creating an environment conducive to preschool children's physical activity. Yet, little is known regarding the perceptions of caregivers, important choice agents for young children's physical activity behavior after participating in a motor skill program. The purpose of this study was to examine caregivers' perceptions of facilitators and barriers to children's physical activity at home among rural, low-income families who participated in a school-based early childhood physical activity program, SKIPping with PALS, designed to increase physical activity and improve motor development. Eleven caregivers consented to participate in a semi-structured interview regarding their perceptions of physical activity and their experience after six months of participation in the program. An inductive, naturalistic evaluation approach was utilized for qualitative data analysis, following the six recursive phases of thematic analysis. A review of the interview transcripts revealed that all caregivers valued physical activity and encouraged their children to be active. Four major facilitators, four major barriers, and an overarching theme of parental support for childhood physical activity were identified. These factors are largely circumstantial and attitudinal and, thus, are difficult to modify but are important to be cognizant of when designing interventions.

Association between environmental factors during the COVID-19 pandemic and functioning of infants with biological risk in the first year of life: Cross-sectional exploratory study

BackgroundChild development can be influenced by family and environmental factors, which changed during the COVID-19 pandemic. Thus, it is important to explore how these factors are associated with the functioning of infants with biological risk in the first year of life. ObjectiveThis study aimed to investigate associations between family factors, home opportunities, caregiver perception of environmental support and barriers at home and environmental factors during the COVID-19 pandemic and gross motor skills and home participation in infants with biological risk in the first year of life. MethodsFifty-six infants aged two to 12 months (M = 5.80 months; ±2.44) and their mothers performed remote assessments of gross motor skills using the Alberta Infant Motor Scale (AIMS); participation and environment (phone call) by the Young Children's Participation and Environment Measure (YC-PEM); family factors (income, age and maternal education), home opportunities – The Affordances in the Home Environment for Motor Development – Infant Scale (AHEMD-IS) and environmental factors during the COVID-19 pandemic (social distancing, emotional and financial factors and physiotherapy) (online forms). Regression models were constructed, considering gross motor skills and home participation as outcome variables, with a 5 % significance level. ResultsWe found that older maternal age (p = 0.001), more home opportunities (p = 0.043), and less rigorous social distancing (as opposed to total social distancing [p = 0.045]) were significantly associated with better gross motor skills; and higher maternal education (p = 0.050) was associated with more involvement in home activities. ConclusionFamily factors, home opportunities and social distancing were differently associated with the gross motor skills and home participation of infants with biological risk in the first year of life.

Childhood attention-deficit hyperactivity disorder: socioeconomic inequalities in symptoms, impact, diagnosis and medication.

Children from disadvantaged backgrounds are at greater risk of attention-deficit hyperactivity disorder (ADHD)-related symptoms, being diagnosed with ADHD, and being prescribed ADHD medications. We aimed to examine how inequalities manifest across the 'patient journey', from perceptions of impacts of ADHD symptoms on daily life, to the propensity to seek and receive a diagnosis and treatment. We investigated four 'stages': (1) symptoms, (2) caregiver perception of impact, (3) diagnosis and (4) medication, in two data sets: UK Millennium Cohort Study (MCS, analyticn ~ 9,000), with relevant (parent-reported) information on all four stages (until 14 years); and a population-wide 'administrative cohort', which includes symptoms (child health checks) and prescriptions (dispensing records), born in Scotland, 2010-2012 (analytic n ~ 100,000), until ~6 years. We described inequalities according to maternal occupational status, with percentages and relative indices of inequality (RII). The prevalence of ADHD symptoms and medication receipt was considerably higher in the least compared to the most advantaged children in the administrative cohort (RIIs of 5.9 [5.5-6.4] and 8.1 [4.2-15.6]) and the MCS (3.08 [2.68-3.55], 3.75 [2.21-6.36]). MCS analyses highlighted complexities between these two stages, however, those from least advantaged backgrounds, with ADHD symptoms, were the least likely to perceive impacts on daily life (15.7% vs. average 19.5%) and to progress from diagnosis to medication (44.1% vs. average 72.5%). Despite large inequalities in ADHD symptoms and medication, parents from the least advantaged backgrounds were less likely to report impacts of ADHD symptoms on daily life, and their children were less likely to have received medication postdiagnosis, highlighting how patient journeys differed according to socioeconomic circumstances.

Stroke virtual rehabilitation in rural communities: exploring the perceptions of stroke survivors, caregivers, clinicians, and health administrators

Purpose Rural-dwelling stroke survivors have unmet rehabilitation needs after returning to community-living. Virtual rehabilitation, defined as the use of technology to provide rehabilitation services from a distance, could be a viable and timely solution to address this need, especially within the COVID-19 pandemic context. There is still a minimal understanding of virtual rehabilitation delivery within rural contexts. This study sought to explore the perceptions of rural stakeholders about virtual stroke rehabilitation. Methods Following an interpretive description approach, 17 qualitative interviews were conducted with stroke survivors (n = 5), caregivers (n = 2), clinicians (n = 7), and health administrators (n = 3), and analyzed to understand their experiences and perceptions of virtual stroke rehabilitation. Results We identified three overarching themes from the participant responses (1) The Root of the (Rural) Problem considered how systemic inequities impact stroke survivors’ and caregivers’ access to stroke recovery services; (2) Common Benefits, Different Challenges identified the unique benefits and challenges of delivering virtual rehabilitation within rural contexts; and (3) Ingredients for Success described important considerations for implementing virtual rehabilitation. Conclusion Virtual rehabilitation is generally accepted by all stakeholders as a supplement to in-person services. Addressing the unique barriers faced by rural clinicians and stroke survivors is necessary to provide successful virtual rehabilitation.

Chinese caregivers’ attitudes towards ABA-based interventions for their autistic children: a qualitative exploration

Objectives Interventions based on Applied Behavior Analysis (ABA) are increasingly used for autistic children in China. However, there is limited knowledge about the attitudes of Chinese caregivers towards ABA-based interventions and their lived experiences. This study aims to preliminarily investigate caregiver experience and perceptions regarding ABA-based interventions through a phenomenological approach. Methods Eight Chinese caregivers of autistic children were interviewed to understand their attitudes towards and experiences of ABA-based interventions. Half of the caregivers’ autistic children were receiving ABA-based interventions, while the other half’s autistic children previously received ABA-based interventions. Results Five major themes were identified through analysis: 1) The beginning and termination of ABA-based interventions; 2) Mixed experiences of ABA-based interventions; 3) The high cost of ABA-based interventions; 4) The involvement of caregivers in ABA-based interventions; 5) Thoughts regarding ideal ABA-based interventions in future China. Both caregiver groups shared positive and negative experiences related to ABA-based interventions. Caregivers expressed concern regarding the quality, accessibility, and sustainability of ABA-based interventions in their communities and the country. Conclusions Implications for policymakers, service providers, and caregivers are discussed: 1) Enhancing the professional workforce for ABA-based interventions; 2) Empowering advocacy and navigating culture; 3) Optimizing the distribution of ABA resources in China; 4) Developing caregiver training and family-centered ABA-based interventions.

Caregiver Perspectives on the Impact of Child Life Specialists during Pediatric Emergency Department Visits

OBJECTIVESTo describe and compare caregiver perceptions of their emergency department (ED) experiences with and without child life specialist (CLS) involvement in their child’s overall care. STUDY DESIGNA descriptive cross-sectional survey of caregivers of children 0-17 years at a tertiary care pediatric ED was completed from March to August 2021. Survey themes included perceived experience and satisfaction, and impact of child life specialists. RESULTSA total of 179 caregivers completed the survey; mean age was 38.9 years (SD 8.4), and 72.6% (122/179) were mothers. Caregivers of children with CLS involvement (CLS+) ranked their overall experience (p= 0.021) and satisfaction (p= 0.009) higher than without CLS involvement (CLS -). More CLS+ caregivers ranked their experience (57.6%, 34/61) and their satisfaction (79.7%, 47/61) as excellent (5/5 Likert scale rating), compared to CLS- caregivers (37.7%, 40/115 and 56.6%, 60/115 respectively). CLS+ families were more likely to be offered non-pharmacologic interventions (e.g., iPad, sensory lights, toys) (98.4% vs 31.3%, p=0.003); they were also more likely to have a healthcare worker explore their feelings and fears (52.5% vs 27.0%, p=0.0008), help them prepare for a procedure or exam (73.8% vs 31.3%, p<0.0001), provide distraction techniques (70.5% vs 19.1%, p<0.0001), offer strategies to help coping (47.5% vs 14.8%, p<0.0001), or provide play opportunities (55.7% vs 9.6%, p<0.0001). CONCLUSIONSCLS involvement in children’s ED care is associated with higher caregiver satisfaction and experience, beyond previously reported procedural distress management. Efforts to increase availability of CLSs should be made to better family experiences in the ED.

Trust over the transition to parenthood: Links to attachment, perception of partner's caregiving, and parenting.

We examined couples' dyadic trust profiles over the transition to parenthood and their associations with couples' attachment representations, perceptions of partner's caregiving, and parenting quality. We followed 125 couples from pregnancy to 24 months postpartum and applied the latent profile analysis (LPA) to examine whether distinct dyadic patterns of trust would emerge among couples. We then examined couples' attachment representations and perceptions of partner's caregiving as factors that might explain their trust profiles. Finally, we examined how couples' trust profiles would be related to their parenting quality 24 months postpartum. The dyadic LPA yielded three trust profiles: a both high profile (N = 64), a mother high, father moderate profile (N = 42), and a mother moderate to low, father moderate profile (N = 19). Mothers with dismissing attachment were able to hold high-stable trust when their partner also held high trust toward them, whereas mothers with preoccupied attachment, in general, were likely to have low and declining trust over time. Mothers' more positive perceptions of their husband's caregiving quality were also related to their high-stable trust over time. Mothers' high trust, in turn, was associated with their less emotionally disengaged and less role-reversed parenting. The findings highlight mothers' important role in couples' dyadic trust over the transition to parenthood. Implications of study findings are discussed. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Patient and Caregiver Perspectives on the Relationship Between Atopic Dermatitis Symptoms and Mental Health.

Background: Atopic Dermatitis (AD) patients have increased likelihood of developing depression and anxiety. The patient and caregiver's perceptions of the correlation of mental health (MH) and AD symptoms are not well understood. Objective: To evaluate patient-reported MH symptoms and their correlation with AD disease severity and understand patient-perceived associations of AD with impacts to their MH. Methods: Adult AD patients (18+ years) or caregivers of AD patients (8-17 years) were recruited to complete a survey about MH and their perception of its relationship with AD. Results: Of 1496 respondents, 954 met inclusion criteria and completed the survey. Respondents were primarily adults (83.3%) with moderate AD (31.4%). In total, 26.0% reported MH symptoms >10 days per month, and most adults (65.5%) scored in the borderline/abnormal range on the Hospital Anxiety and Depression Scale. Most (70.6%) respondents perceived their MH was negatively affected by AD in the past 12 months. AD severity impacted the perception of the relationship between AD and MH; respondents were more likely to believe MH was impacted by AD when they/their child had severe AD. Conclusion: Our study highlights patient and caregiver awareness of the detrimental impact of AD on MH. Addressing MH in AD care settings early in the disease journey may be beneficial.

Caregivers' Experience with Lip Taping as a Presurgical Orthopedic Treatment for Cleft Lip and Palate Defects.

This study aimed to assess caregivers' experiences and perceptions of applying lip taping as presurgical orthopedic therapy (PSO) for infants with a cleft lip and palate. A retrospective survey was conducted, inviting parents to respond to a series of structured questions between September 2022 and June 2023. The questionnaire focused on evaluating parents' experience with lip taping, a crucial component of PSO. Descriptive statistics and the Chi-square test were employed to analyze relationships between categorical variables. Of the 157 participants, overall, 122 completed the survey, forming the dataset for analysis. A majority (90.0%) reported sufficient experience in using lip taping and no major difficulties with lip taping application. Caregivers with higher education levels exhibited a significantly positive correlation (p = 0.015). Additionally, 93.4% confirmed the efficacy of lip taping for premaxillary segment retraction, with this outcome being correlated with caregivers' knowledge and education (p = 0.008). Interestingly, caregivers' age also demonstrated a substantial association (p = 0.020). While a vast majority expressed positive experiences with lip taping as a presurgical treatment, continuous, tailored education on cleft lip and palate is imperative. This education should be directed towards caregivers and individuals offering direct support to parents of children with CLP, ensuring optimal care and preparation for surgical treatment.

Exploring perceptions of and decision-making about CFTR modulators.

Cystic fibrosis (CF)treatment has increasingly focused on highly effective modulators. Despite measurable benefits of modulators, there is little guidance for CF care team members on providing education and support to patients regarding initiation of these therapies. We aimed to explore patient, caregiver, and clinician perceptions of modulators and influences on decisions about starting cystic fibrosis transmembrane regulator (CFTR) modulators. We conducted semistructured interviews with CF clinicians, adults with CF, and caregivers of children with CF. We reviewed audio recordings and coded responses to identify central themes. We interviewed 8 CF clinicians, 9 adults with CF, and 11 caregivers of children with CF. Themes centered on emotional responses to modulator availability, influences on decision-making, concerns about side effects, impact of modulators on planning for the future, the benefits of the multidisciplinary CF care team in supporting treatment decisions, and the unique needs of people with CF who are not eligible for modulators. Clinicians described changes in conversations about modulators since the approval of elexacaftor/tezacaftor/ivacaftor, specifically greater willingness to prescribe with less nuanced conversations with patients and/or caregivers regarding their use. Based on perspectives and experiences of CF clinicians, adults with CF, and caregivers of children with CF, we suggest clinicians approach conversations about CFTR modulators thoughtfully and thoroughly, utilizing the multidisciplinary model of CF care in exploring patient and caregiver emotions while filling in knowledge gaps, asking about treatment goals beyond potential clinical benefit, and having compassionate conversations with those who are ineligible for modulators.

A mixed-methods evaluation of organization and individual factors influencing provider intentions to use caregiver coaching in community-based early intervention.

Most psycho-social interventions contain multiple components. Practitioners often vary in their implementation of different intervention components. Caregiver coaching is a multicomponent intervention for young autistic children that is highly effective but poorly implemented in community-based early intervention (EI). Previous research has shown that EI providers' intentions, and the determinants of their intentions, to implement caregiver coaching vary across components. Organizational culture and climate likely influence these psychological determinants of intention by affecting beliefs that underlie attitudes, norms, and self-efficacy to implement an intervention. Research in this area is limited, which limits the development of theoretically driven, multilevel implementation strategies to support multi-component interventions. This mixed methods study evaluated the relationships among organizational leadership, culture and climate, attitudes, norms, self-efficacy, and EI providers' intentions to implement the components of caregiver coaching. We surveyed 264 EI providers from 37 agencies regarding their intentions and determinants of intentions to use caregiver coaching. We also asked questions about the organizational culture, climate, and leadership in their agencies related to caregiver coaching. We used multilevel structural equation models to estimate associations among intentions, psychological determinants of intentions (attitudes, descriptive norms, injunctive norms, and self-efficacy), and organizational factors (implementation climate and leadership). We conducted qualitative interviews with 36 providers, stratified by strength of intentions to use coaching. We used mixed-methods analysis to gain an in-depth understanding of the organization and individual-level factors. The associations among intentions, psychological determinants of intentions, and organizational factors varied across core components of caregiver coaching. Qualitative interviews elucidated how providers describe the importance of each component. For example, providers' attitudes toward coaching caregivers and their perceptions of caregivers' expectations for service were particularly salient themes related to their use of caregiver coaching. Results highlight the importance of multi-level strategies that strategically target individual intervention components as well as organization-level and individual-level constructs. This approach holds promise for improving the implementation of complex, multicomponent, psychosocial interventions in community-based service systems.

Do Caregiver Perceptions of the Virtual More Than Words® Program Differ Based on Autistic Children's Attributes?

More Than Words® (MTW) is a caregiver-mediated intervention program led by a speech-language pathologist (SLP) who teaches caregivers strategies to support their autistic child's early social communication and play development. The program includes group sessions composed of multiple families with children of varying profiles. We explored whether caregiver experiences and perceived outcomes of the virtual MTW program differed depending on the child's age and social communication stage. As part of a program evaluation of virtual MTW delivered to over 2,000 families in Ontario, Canada, between 2020 and 2021, we randomly selected 31 families across four social communication stages and two age groups using stratified sampling (n = 4, in all but one subgroup). The Final Reflection and Evaluation form was analyzed both qualitatively and quantitatively, and a modified RE-AIM framework guided our analyses, including theme development. Child attributes did not appear to impact caregivers' experiences, but perceived child skill improvements varied by children's social communication stage. The majority of caregivers reported changes in how they interact with their child. Four themes emerged: (a) perceived child skill improvements differed by social communication stage, (b) caregivers gained new knowledge and strategies regardless of child attributes, (c) SLPs effectively managed families' individual needs, and (d) program components were appropriate for a variety of families. Findings suggest that the content taught in the MTW program was relevant for a variety of children, including those beyond the program's intended age of 5 years and under. Grouping families of children with varying profiles does not appear to negatively influence caregivers' experiences or perceived outcomes. https://doi.org/10.23641/asha.25237009.

Social connectedness and the role of virtual reality: experiences and perceptions of people living with dementia and their caregivers

Purpose People living with dementia are often at increased risk of becoming socially disconnected due to dementia-related challenges. In recent years, digital technology has been designed to help address the social health of people living with dementia and provide opportunities to promote or maintain their social connectedness. This paper presents the findings from phase two of a participatory action research project, which explored people living with dementia and their caregiver’s experiences and perceptions of social connectedness and the potential role of Virtual Reality (VR) in promoting or maintaining same. Materials and Methods People living with dementia (n = 8) and their informal caregivers (n = 8) participated in an individual, 1:1 online interview. Data analysis was guided by reflexive thematic analysis. Results The findings presented four themes: social connectedness: lived experiences and insights, facilitating social connectedness, barriers to social connectedness and the potential of multi-user VR for social connectedness. People living with dementia experienced a range of personal, community and societal connectedness. Facilitators of social connectedness included supportive, non-judgemental, and reciprocal relationships, technology adoption, and personal and contextual facilitators. Dementia-related difficulties and periods of disruption or change were considered barriers to social connectedness. Multi-user VR was perceived as useful for promoting and maintaining social connectedness. Conclusions The perceived usefulness of multi-user VR for social connectedness indicates its potential for use with this population. Understanding the lived experiences, barriers, and facilitators of social connectedness will assist researchers and the human-computer interaction community to inform the design of future multi-user VR for social connectedness outcomes with people living with dementia and their caregivers.

Caregivers' perspectives of community acceptance before and after surgical treatment for their child's disability.

In Tanzania, about 600 000 youth between 5 and 24 years old have a disability. Individuals with disabilities face numerous obstacles due to social stigma. The aim of this formative evaluation is to assess how caregivers of children with correctable disabilities (e.g., cleft lip/palate, club foot, and burn scar contractures) in Tanzania perceive their community's acceptance of their child before and after surgical treatment. Semi-structured interviews were conducted with 80 caregivers of children with disabilities treated at Kafika House in Arusha, Tanzania. The constant comparative method identified themes regarding the caregivers' feelings on their child's functional abilities and experiences of stigma in their community. Caregiver perceptions of stigma before and after surgical treatment were categorized and quantified as 'positive', 'neutral' and 'negative'. Thematic analysis of the 80 interviews resulted in five major themes: (1) stigma and acceptance (pre-treatment) and (2) post-treatment; (3) functional abilities (pre-treatment) and (4) post-treatment; and (5) emotional impact (pre- and post-treatment). These themes indicate caregivers and their children experience a range of emotional impacts before and after treatment, more severe stigma before treatment, and overall better social, emotional and functional status after treatment. Frequency analysis of caregiver experiences indicated that stigma experienced by children and their families decreased from 75% before surgical treatment to 2.5% after surgery. Surgical intervention and rehabilitation of physical disabilities mitigated experiences of social stigma for both children and their caregivers. Findings support the need for expanded treatment of correctable disabilities, larger investments in community-based rehabilitation programmes and further interventions to support stigmatized parents and their children.

Family members’ experiences of everyday caregiving for a family member living with Parkinson’s disease: a qualitative thematic analysis study

BackgroundIn the daily life of individuals living with Parkinson's disease, their loved ones are crucial. Adapting family members to the patient's condition, support in providing care, and psychosocial adaptations is essential.AimTo explore family members' perception of everyday caregiving for a family member living with Parkinson's disease and to describe their role in the care and everyday life.MethodsIn a descriptive, qualitative thematic analysis study, semi-structured interviews were conducted with ten people between the ages of 20 and 70, the closest family members of people living with Parkinson's disease. The analysis of the collected data was carried out using thematic analysis.ResultsWe generated the main theme: "Living with a family member with Parkinson’s disease", with associated secondary-level sub-themes: “Response”, “Change”, “Care”, and “Support”. Family members of individuals living with Parkinson's disease frequently encounter similar life situations. The most notable transformation in their daily lives primarily revolves around adapting to various activities.ConclusionsFamily members are the ones who most often take on the role of caregiver and provide help to their loved ones. Many of them accept the disease as a part of everyday life and learn to live with it. It is of fundamental importance that we offer family members the necessary support, knowledge, and involvement in holistic treatment and care.

PremieFeed: Investigating Preterm Infant Feeding Behaviors, Growth, and Caregiver Experiences in the First Weeks After NICU Discharge.

This study aimed to longitudinally investigate the preterm infant feeding regimens, feeding behaviors, effect on infant growth, and caregiver perceptions and experiences with feeding in the first 4 weeks following hospital discharge. Preterm infants face high nutritional risk due to their underdeveloped gastrointestinal systems and feeding coordination. Caregivers of preterm infants were recruited to participate in a weekly telephone survey for the first 4 weeks following the infant's hospital discharge. Responses for infant feeding behaviors and caregiver experiences were scored on a 3-point Likert scale. Growth and feeding data were collected from the infant's first neonatal intensive care unit (NICU) developmental follow-up visit. Twenty-four caregivers completed the study. Changes in feeding regimens were common (8/24 infants; 33%), with the percentage of infants receiving any human milk feedings decreasing from 70% at hospital discharge to 54% at 4 weeks post-discharge. Poor infant feeding skills were weakly associated with poor caregiver feeding experiences, and 46% of caregivers reported contacting their healthcare provider with feeding-related questions. Thirty-eight percent of infants required nutritional intervention at NICU developmental follow-up visit. Infants who received fortified feedings during the first 4 weeks after hospital discharge grew an average of 2.5 g/day faster than infants who did not receive fortified feedings. The postdischarge period for preterm infants is characterized by feeding regimen changes, a decrease in human milk use, and caregiver questions about feeding. Future studies should further investigate the period after hospital discharge to enable better feeding support for preterm infants and their caregivers.

Outpatient Care Service: Predictors Of Current And Future Use Of Outpatient Care Service By Family Members Providing Informal Care To Elderly Persons In Long-Term Home Care

In Germany, people in need of care are usually cared for at home by their informal caregivers. The outpatient care service represents a central pillar in the home care of people in need of care. The aim of this article was to analyse the factors influencing the current as well the future use of outpatient care service. With the cross-sectional study Benefits of Being a Caregiver (October 2019 - March 2020) overall 958 family caregivers of elderly people in need of care from Bavaria were interviewed. In addition to the characteristics of the caregivers and those in need of care, information on the care situation as well as the current and desired future use of outpatient care service were collected. Two binary logistic regression analyses were carried out to determine the predictors of the use. The outpatient care service was used by 368 (38%) care giving relatives or those in need of care currently or recently. 236 family caregivers (40% of current non-users) stated that they would like to use an outpatient care service in the future. As predictors for the current use, the relationship non-partner, a higher care level of the persons in need of care and the perception of caregivers of not being able to manage care-giving were determined. Predisposing factors for the desired future use were the desire for current informal help and a lower care level. Family caregivers using the outpatient care service state that they are less able to cope with home care. Therefore, this service should focus its counselling on the empowerment of the caregivers. Moreover, the users are predominantly employed daughters or daughters-in-law who live in separate households. Therefore, the reliability of the offer is a basic condition for being able to maintain home care. In the future, a considerable increase in the number of informal care givers wishing to use outpatient care services is to be expected. Efforts should therefore be made to enlarge the range of services.

Life-Space of Older Adults after Discharge from Skilled Nursing Facilities

ObjectivesDescribe (1) patient or caregiver perceptions of physical function in 30 days after skilled nursing facility (SNF) discharge indicated by Life-Space Assessment (LSA) scores, and (2) patient and caregiver factors associated with LSA scores. DesignSecondary analysis of baseline and outcomes data from the cluster randomized trial of the Connect-Home transitional care intervention. Setting and ParticipantsSix SNFs in North Carolina. Patient and caregiver dyads with LSA scores (N = 245). MethodsSNF patients or their caregivers serving as proxy reported the life-space of the SNF patient using the LSA tool, a measure of environmental and social factors that influence physical mobility. Simple scores for highest life-space attained depending on equipment and/or caregiver support range from 0 to 5, with higher scores indicating greater mobility. Multiple linear regression models for simple LSA scores and Composite Life-Space (0-120), adjusted for treatment, time via a COVID pandemic indicator, and treatment × COVID effect as fixed effects, were used to estimate the association of patient and caregiver variables and life-space. ResultsPatients had a mean age of 76.3 years, 62.6% were female, and 74.7% were white. Caregivers were commonly female (73.9%) and adult children of the patient (46.5%). The mean Composite Life-Space score was 22.6 (16.09). The mean Assisted Life-Space score (range: 0-5) was 1.6 (1.47), and 76.3% of patients could not move beyond their bedroom, house, and yard without assistance of another person. Higher Composite Life-Space scores were associated with lower levels of cognitive impairment and shorter SNF length of stay. Conclusions and ImplicationsSNF patients and their caregivers reported very low LSA scores in 30 days after SNF care. Findings indicate the need for care redesign to promote recovery of physical function of older adults after SNF discharge, such as optimizing SNF rehabilitative therapy and adding postdischarge rehabilitative supports at home.

‘Of’ the community but not ‘of’ the health system: Translating community health workers’ knowledge into credible advice in Aceh, Indonesia

Community health workers (CHWs)—or ‘cadres’ as they are known in Indonesia—are intermediaries between the health system and the community, providing maternal and child health services at a village level. However, systemic and contextual factors inhibit CHWs from realising their potential impact. Training is essential for improving CHW performance; however, there is a need to understand whether and how this affects the care communities receive. This paper explores how communities in Aceh Province, Indonesia, receive care from cadres and the extent to which training interventions of CHWs influence this care. Semi-structured interviews were conducted remotely with 10 cadres in two districts in Aceh between June and July 2021, and five focus group discussions were conducted face-to-face with 21 caregivers of young children in one district in September 2021. Data were iteratively and thematically analysed throughout data collection. Cadres were seen as ‘of’ the community but not ‘of’ the health system. Cadres found training valuable. However, training did not adequately address the contextual challenges cadres face. From the caregivers’ perspective, cadres’ enhanced knowledge did not translate into credible guidance. Their proximity to the community and perceived distance from the health system undermined caregiver perceptions of cadres’ credibility. Infrastructural limitations of Posyandu inhibited CHW’s perceived ability to perform their roles effectively. To maximise the potential of their role, there must be more investment in enhancing the credibility of cadres within their communities—and programmatic factors such as training must better account for and adapt to the local context.

Patient and caregiver perceptions of Chiari malformation: a qualitative analysis of online discussion boards.

Patients and their caregivers utilize online discussion board forums as a means to seek and exchange information about their or a loved one's condition. It is important for providers to be aware of such concerns and experiences. The goal of this study was to identify the primary concerns expressed on these discussion boards regarding Chiari malformation type I (CM) and to help guide clinicians in understanding patient challenges in the treatment of CM. The authors performed thematic analysis of anonymous online discussion board posts as identified through internet search engines. They then adopted a previously developed grounded theory method that utilizes a three-tiered coding and grouping process of posts based on commonly discovered content themes. Analysis of 400 discussion board posts identified four distinct themes raised by CM patients and their caregivers: the path to diagnosis, symptoms experienced, surgical intervention, and high emotional burden. Although each individual experience was unique, the path toward a CM diagnosis was expressed as a journey involving multiple physicians, alternative diagnoses, and feelings of dismissal from providers. The most common reported symptoms included dizziness, headaches, neck and back pain, sensory issues, weakness and paresthesias of the extremities, speech issues, and general fatigue. Additionally, there was an overall sense of uncertainty from patients seeking advice regarding surgical intervention, with users expressing diverse sentiments that included both positive and negative outcomes regarding surgical treatment. Lastly, a wide range of emotions was expressed related to a CM diagnosis, including concern, worry, anxiety, depression, stress, fear, and frustration. CM is a frequent imaging diagnosis identified in patients presenting with a wide range of symptoms, and as a result this leads to a diverse set of patient experiences. Analysis of CM patient and caregiver discussion boards revealed key themes that clinicians may address when counseling for CM.