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AHRQ Research Studies
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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 25 of 227 Research Studies DisplayedWust KL, Carayon P, Werner NE
Older adult patients and care partners as knowledge brokers in fragmented health care.
This study explores the knowledge broker roles of older adult patients and their care partners during emergency department (ED) visits. The research concludes that patients and care partners serve as information liaisons between fragmented care systems, providing details on diagnostic testing, medications, health history, and care accommodations. They engage in proactive and reactive knowledge brokering within and across ED work systems, aiding in communication and care coordination to mitigate healthcare fragmentation.
AHRQ-funded; HS026624.
Citation: Wust KL, Carayon P, Werner NE .
Older adult patients and care partners as knowledge brokers in fragmented health care.
Hum Factors 2024 Mar; 66(3):701-13. doi: 10.1177/00187208221092847.
Keywords: Elderly, Emergency Department, Caregiving, Clinician-Patient Communication, Communication
Pozzar RA, Wall JA, Tavormina A
Experiences of patients with peritoneal carcinomatosis-related complex care needs and their caregivers.
The study explored the needs of patients with peritoneal carcinomatosis (PC) and caregivers during care transitions. Findings showed limited prognostic understanding and advance care planning among patients, with most caregivers providing daily care without proper training. Many participants experienced anxiety and depression. Interviewees emphasized the lack of guidance and called for health system changes. The study concluded that interventions providing clinical training, facilitating serious illness conversations, and offering psychosocial support are necessary.
AHRQ-funded; HS013852.
Citation: Pozzar RA, Wall JA, Tavormina A .
Experiences of patients with peritoneal carcinomatosis-related complex care needs and their caregivers.
Gynecol Oncol 2024 Feb; 181:68-75. doi: 10.1016/j.ygyno.2023.12.013.
Keywords: Cancer, Caregiving, Palliative Care, Women
Nacht CL, Jacobson N, Shiyanbola O
Perception of physicians' notes among parents of different health literacy levels.
The study explored how parents of varying health literacy levels perceive accessing physicians' notes during pediatric hospitalization. Thematic analysis of interviews with 28 parents revealed benefits like information recall and autonomy, with challenges including receiving bad news before face-to-face communication. The study found that parents with limited literacy found notes especially helpful for understanding the care of the child while reducing worry. Simplifying medical terms could enhance note accessibility for all parents, ensuring equitable access to healthcare information.
AHRQ-funded; HS027214.
Citation: Nacht CL, Jacobson N, Shiyanbola O .
Perception of physicians' notes among parents of different health literacy levels.
Hosp Pediatr 2024 Feb; 14(2):108-15. doi: 10.1542/hpeds.2023-007240.
Keywords: Children/Adolescents, Health Literacy, Caregiving, Clinician-Patient Communication, Communication
Jolliff A, Coller RJ, Kearney H
An mHealth design to promote medication safety in children with medical complexity.
This study describes an effort to design a health information technology tool to improve medication safety for children with medical complexity (CMC). The study engaged family caregivers, secondary caregivers, and clinicians who work with CMC in a co-design process to identify: 1) medication safety challenges experienced by CMC caregivers and, 2) design requirements for a mobile health application to improve medication safety for CMC in the home. Family caregivers, secondary caregivers, and clinicians from a children's hospital-based pediatric complex care program participated in virtual co-design sessions. During these sessions, the facilitator guided 16 co-designers in generating and converging upon medication safety challenges and design requirements. These sessions were recorded and reviewed after conclusion to confirm that all designer comments had been captured. An analysis yielded 11 challenges to medication safety and 11 corresponding design requirements that fit into three broader challenges: giving the right medication at the right time; communicating with others about medications; and accommodating complex medical routines.
AHRQ-funded; HS028409.
Citation: Jolliff A, Coller RJ, Kearney H .
An mHealth design to promote medication safety in children with medical complexity.
Appl Clin Inform 2024 Jan; 15(1):45-54. doi: 10.1055/a-2214-8000..
Keywords: Children/Adolescents, Medication: Safety, Medication, Health Information Technology (HIT), Chronic Conditions, Telehealth, Caregiving
Kaufman BG, Holland DE, Vanderboom CE
Implementation costs of technology-enhanced transitional palliative care for rural caregivers.
Rural FCG experience higher levels of burden accessing coordinated care for their loved ones during and after hospitalization than urban family caregivers (FCG). The role of technology-enhanced transitional palliative care (TPC) on caregiver outcomes is currently being assessed in a randomized control trial. The purpose of this study was to assess resource use and health system costs of this FCG-focused TPC intervention and potential Medicare reimbursement mechanisms. The researchers randomized rural caregivers of hospitalized patients into an 8-week intervention which included video visits conducted by a registered nurse certified in palliative care, and supplemented with phone calls and texts (n = 215), or attentional control. The researchers estimated labor costs for a registered nurse and compared to scenario analyses utilizing a nurse practitioner or social worker wages. Medicare reimbursement scenarios included Transitional Care Management (TCM) and Chronic Care Management (CCM) CPT codes. The researchers found the base case, TPC cost was $395 per FCG conducted by a registered nurse, compared to $337 and $585 if conducted by a social worker or nurse practitioner, respectively. Reimbursement in the CCM-only scenario was $348 and $274 for complex and non-complex patients, respectively. Average Medicare reimbursement in the TCM-only scenario was $322 and $260 for high or moderate complexity patients, respectively. Reimbursement in the TCM+CCM scenario was $496 and $397, for high/complex and moderate/non-complex patients, respectively.
AHRQ-funded; HS026379.
Citation: Kaufman BG, Holland DE, Vanderboom CE .
Implementation costs of technology-enhanced transitional palliative care for rural caregivers.
Am J Hosp Palliat Care 2024 Jan; 41(1):38-44. doi: 10.1177/10499091231156145..
Keywords: Rural Health, Caregiving, Palliative Care, Health Information Technology (HIT)
Goyal NK, Sood E, Gannon MA
Priorities for well child care of families affected by parental opioid use disorder.
This study’s objective was to explore priorities for well childcare (WCC) visit content for women in treatment with opioid use disorder to inform primary care recommendations for this population. Eligible participants had children 2 years or younger and were English speaking. Among the 30 parent participants, they were overwhelmingly White (83%) and unmarried (90%). Thirteen clinicians participated, of whom 9 were attending physicians. Interviews were conducted with parents and clinicians which led to five emerging themes: (1) improving knowledge and confidence related to child development, behavior, and nutrition; (2) mitigating safety concerns; (3) addressing complex health and subspecialty needs through care coordination; (4) acknowledging parental health and wellbeing in the pediatric encounter; and (5) supporting health education and care related to neonatal opioid withdrawal syndrome. These issues were expressed as hard to address by parents and clinicians due to time constraints, social determinants of health, and significant informational needs.
AHRQ-funded; HS027399.
Citation: Goyal NK, Sood E, Gannon MA .
Priorities for well child care of families affected by parental opioid use disorder.
J Addict Med 2024 Jan-Feb; 18(1):48-54. doi: 10.1097/adm.0000000000001243..
Keywords: Opioids, Substance Abuse, Behavioral Health, Caregiving, Children/Adolescents
Graaf G, Hughes PM, deJong NA
Family support services and reported parent coping among caregivers of children with emotional, behavioral, or developmental disorders.
Researchers examined the association of family support services with caregiver mental health and well-being, as well as caregiver coping, among families of children with special health care needs (CSHCN). Data was taken from the National Survey of Children's Health. Results showed that adequate care coordination was associated with higher rates of caregiver-reported positive coping for CSHCN caregivers who had no source of emotional support. Emotional support services were also associated with increased reports of positive coping. The researchers concluded that mobilization of resources that can aid caregivers in coordinating care and provide emotional support may play a key role in positive caregiver coping for families of CSHCN.
AHRQ-funded; HS000032.
Citation: Graaf G, Hughes PM, deJong NA .
Family support services and reported parent coping among caregivers of children with emotional, behavioral, or developmental disorders.
J Dev Behav Pediatr 2024 Jan; 45(1):e54-e62. doi: 10.1097/dbp.0000000000001230.
Keywords: Children/Adolescents, Caregiving, Disabilities, Behavioral Health
Ramirez M, De Anda S, Jin H
Health information-seeking behavior of Latino caregivers of people living with dementia: a mixed-methods study.
This study examined the health information-seeking behavior of Latino caregivers of people living with dementia. This mixed-methods study used a structured survey and semi-structured interviews with 21 Latino caregivers in Los Angeles, California. Semi-structured interviews were also conducted with six healthcare and social service providers. The results showed that caregivers sought information on what changes to expect as dementia progresses to be better prepared. The most common action they used was to search the Internet. However, those who did were concerned about the quality of information.
AHRQ-funded; HS00046,HS026369.
Citation: Ramirez M, De Anda S, Jin H .
Health information-seeking behavior of Latino caregivers of people living with dementia: a mixed-methods study.
J Appl Gerontol 2023 Aug; 42(8):1738-48. doi: 10.1177/07334648231163430..
Keywords: Caregiving, Dementia, Neurological Disorders, Racial and Ethnic Minorities
Bristol AA, Elmore CE, Weiss ME
Mixed-methods study examining family carers' perceptions of the relationship between intrahospital transitions and patient readiness for discharge.
Intrahospital transitions (IHTs) may disrupt care coordination. Family caregivers often serve as liaisons between the patient and healthcare professionals, yet caregivers are often excluded from care planning during IHTs. The aim of this sequential, explanatory mixed-methods study was to examine family caregiver’s perceptions about IHTs, patient and caregiver ratings of patient discharge readiness, and caregiver self-perception of level of preparedness for engaging in care at home. The researchers conducted a retrospective analysis of hospital inpatients from a parent study for whom patient and family caregiver Readiness for Hospital Discharge Scale (RHDS) score frequency of IHTs and patient and caregiver characteristics were available. The study found that a total of 268 patients discharged from July 2020 to April 2021 had completed the RHDS and 23 completed the semi-structured interviews. The majority of patients experienced 0-2 IHTs and reported high levels of discharge readiness. No association was found between IHTs and patients' RHDS scores in the quantitative analysis. However, caregiver’s perceptions of patient discharge readiness were negatively correlated with increased IHTs. In addition, non-spouse caregivers reported lower RHDS scores than spousal caregivers. During interviews, caregivers shared barriers experienced during IHTs and described the importance of being included in discharge care planning.
AHRQ-funded; HS026248; HS026505.
Citation: Bristol AA, Elmore CE, Weiss ME .
Mixed-methods study examining family carers' perceptions of the relationship between intrahospital transitions and patient readiness for discharge.
BMJ Qual Saf 2023 Aug; 32(8):447-56. doi: 10.1136/bmjqs-2022-015120..
Keywords: Caregiving, Hospital Discharge, Transitions of Care
Sideman AB, Gilissen J, Harrison KL
Caregiver experiences navigating the diagnostic journey in a rapidly progressing dementia.
This mixed-methods study examined the diagnostic journey experience from the perspective of caregivers of people who died from sporadic Creutzfeldt-Jakob Disease (sCJD). Qualitative data were drawn from interviews with former caregivers of 12 people who had died from sCJD. Four overarching themes were identified, as well as 4 phases along the diagnostic journey. Findings suggested that more work was needed to improve clinician diagnostic knowledge and communication practices. The authors also noted that caregivers need better support during the diagnostic journey and concluded that lessons learned from studying sCJD and other rapidly progressive dementias is likely to be applicable to more common dementias.
AHRQ-funded; HS022241.
Citation: Sideman AB, Gilissen J, Harrison KL .
Caregiver experiences navigating the diagnostic journey in a rapidly progressing dementia.
J Geriatr Psychiatry Neurol 2023 Jul; 36(4):282-94. doi: 10.1177/08919887221135552..
Keywords: Caregiving, Dementia, Neurological Disorders
Keita Fakeye MB, Samuel LJ, Drabo EF
Caregiving-related work productivity loss among employed family and other unpaid caregivers of older adults.
Despite the fact that a significant proportion of caregivers to elderly individuals are employed, little is known about short-term work impacts of caregiving while physically present at work using measures related to both missed work time and reduced productivity. The purpose of this study was to quantify the prevalence, costs, and correlates of caregiving-related work productivity loss. The researchers utilized the 2015 National Study of Caregiving and National Health and Aging Trends Study to estimate caregiving-related work absences (absenteeism) and reduced productivity while at work (presenteeism). The costs of lost productivity using hours lost, compensation, and a wage multiplier, accounting for the additional cost of replacing employee time were calculated. Researchers then separately examined the relationship between caregiving-related absenteeism and presenteeism. The study found that Nearly 1 in 4 of the estimated 8.8 million employed family caregivers reported either absenteeism or presenteeism over a 1-month period due to caregiving. Among those affected, caregiving decreased work productivity by an estimated $5600 per employee predominantly due to reduced performance at work. Loss of productivity was greater among the caregivers of older adults with substantial care needs and varied based on sociodemographic characteristics and caregiver supports.
AHRQ-funded; HS000029.
Citation: Keita Fakeye MB, Samuel LJ, Drabo EF .
Caregiving-related work productivity loss among employed family and other unpaid caregivers of older adults.
Value Health 2023 May; 26(5):712-20. doi: 10.1016/j.jval.2022.06.014..
Keywords: Caregiving, Elderly
Auger KA, Demeritt B, Beck AF
Reducing caregiver hunger during pediatric hospitalization.
This paper describes an effort to decrease the mean percentage of caregivers who reported being hungry while their child is hospitalized. The objective was to decrease the mean percentage of caregivers of Medicaid-insured and uninsured children who reported being hungry during their child's hospitalization from 86% to <24%. The authors were able to decrease caregiver hunger on a 41-bed inpatient unit at their large, urban academic hospital from 86% to 15.5% with the use of 2 meal vouchers per caregiver per day. Data collection was interrupted due to the COVID-19 pandemic, however that time was used to advocate for hospital-funded support for optimal and sustainable changes to caregiver meal access. As a result of the pilot test, permanent hospital funding was secured to provide cards to purchase 2 meals per caregiver per hospital day, resulting in a sustained decrease in rates of caregiver hunger.
AHRQ-funded; HS024735.
Citation: Auger KA, Demeritt B, Beck AF .
Reducing caregiver hunger during pediatric hospitalization.
Pediatrics 2023 May; 151(5). doi: 10.1542/peds.2022-058080..
Keywords: Children/Adolescents, Caregiving
Carroll AR, Schlundt D, Bonnet K
Caregiver and clinician perspectives on discharge medication counseling: a qualitative study.
This study’s objective was to explore the perspectives of multidisciplinary clinicians and caregivers regarding discharge medication counseling for children and to develop a conceptual model to inform intervention efforts to reduce discharge medication dosing errors. The authors conducted a qualitative analysis using results from focus groups and individual interviews with 17 caregivers and 16 clinicians. Domains and subthemes included: (1) infrastructure of healthcare delivery, including supplies for counseling, content and organization of discharge instructions, clinician training and education, roles and responsibilities of team members, and hospital pharmacy delivery and counseling program; (2) processes of healthcare delivery, including medication reconciliation, counseling content, counseling techniques, and language barriers and health literacy; and (3) measurable outcomes, including medication dosing accuracy and caregiver understanding and adherence to discharge instructions. The conceptual model that resulted from this analysis can be applied to the development and evaluation of interventions to reduce discharge medication dosing errors following a hospitalization.
AHRQ-funded; HS026122.
Citation: Carroll AR, Schlundt D, Bonnet K .
Caregiver and clinician perspectives on discharge medication counseling: a qualitative study.
Hosp Pediatr 2023 Apr; 13(4):325-42. doi: 10.1542/hpeds.2022-006937..
Keywords: Children/Adolescents, Medication, Hospital Discharge, Education: Patient and Caregiver, Caregiving
Short VL, Gannon M, Sood E
Opportunities to increase well-child care engagement for families affected by maternal opioid use disorder: perceptions of mothers and clinicians.
The objectives of this qualitative study were to gather in-depth information regarding maternal and clinician-reported factors that facilitate or hinder well-child care (WCC) engagement as well as information from mothers' experiences during WCC visits. Thirty mothers in treatment for parental opioid use disorder (OUD) and 13 clinicians working at a pediatric primary care clinic participated by completing one telephone session which involved a brief questionnaire followed by a semi-structured interview. Facilitators identified by mothers and clinicians, included continuity of care, addressing material needs, and clinician OUD training and knowledge. Barriers to WCC included: stigma toward mothers with OUD, gaps in basic parenting knowledge, competing specialized health care needs, and insufficient time to address concerns.
AHRQ-funded; HS027399.
Citation: Short VL, Gannon M, Sood E .
Opportunities to increase well-child care engagement for families affected by maternal opioid use disorder: perceptions of mothers and clinicians.
Acad Pediatr 2023 Mar;23(2):425-33. doi: 10.1016/j.acap.2022.07.013.
Keywords: Children/Adolescents, Family Health and History, Opioids, Substance Abuse, Behavioral Health, Caregiving, Patient and Family Engagement
Couch E, Belanger E, Gadbois EA
"I know that my role is going to change": a mixed-methods study of the relationship between amyloid-β PET scan results and caregiver burden.
The purpose of this study was to clarify the relationship between amyloid scan results and subjective and objective indicators of burden. The researchers utilized a parallel mixed-methods design using survey data from 1,338 care partners of persons with mild cognitive impairment (MCI) and dementia who received an amyloid scan from the CARE-IDEAS study, and semi-structured interviews with a subsample of 62 care partners. The study found that amyloid was not associated with burden. However, the scan result influenced participants' perceptions of their caregiving role and coping strategies. Care partners to persons with elevated amyloid expected increasing responsibility, while partners to persons without elevated amyloid and mild cognitive impairment did not anticipate changes to their role. Care partners to persons with elevated amyloid reported using knowledge gained from the scan to develop coping strategies. All care partners described needing practical and emotional support.
AHRQ-funded; HS000011.
Citation: Couch E, Belanger E, Gadbois EA .
"I know that my role is going to change": a mixed-methods study of the relationship between amyloid-β PET scan results and caregiver burden.
Aging Clin Exp Res 2023 Feb; 35(2):387-97. doi: 10.1007/s40520-022-02314-6..
Keywords: Caregiving, Dementia
Hale KL, Zalla LC, Scherer EM
Grandparenting activities and mental health in Northern Sri Lanka.
The role of grandparenting activities in mitigating social engagement and depressive symptoms in older adults is a growing area of research interest. However, the diversity in demographic characteristics and caregiving responsibilities pose challenges in its measurement. The purpose of this study was to pilot test a mechanism for assessing grandparenting activities in a sample of 79 grandparents (aged 55 and above) in Sri Lanka and examined the relationship between these activities and psychological discomfort. The researchers further investigated if the correlation was influenced by the grandparents' functional constraints. The study found a positive correlation between increased involvement in generative grandparenting activities and reduced psychological distress, with the association being more pronounced in grandparents with higher functional restrictions.
AHRQ-funded; HS000032.
Citation: Hale KL, Zalla LC, Scherer EM .
Grandparenting activities and mental health in Northern Sri Lanka.
J Intergener Relatsh 2023; 21(2):194-214. doi: 10.1080/15350770.2021.1991869..
Keywords: Caregiving, Behavioral Health, Elderly
De Roo AC, Ha J, Regenbogen SE
Impact of Medicare eligibility on informal caregiving for surgery and stroke.
The purpose of this study was to assess whether the intensity of family and friend care changes after older individuals enroll in Medicare at 65. Researchers used Health and Retirement Study survey data covering a 20-year period to compare informal care received by patients who had been hospitalized for stroke, heart surgery, or joint surgery, and who were stratified into propensity-weighted pre- and post-Medicare eligibility cohorts. Their results showed that onset of Medicare eligibility was associated with a substantial decrease in family and friend caregiving use received by stroke patients, but not in the other acute care cohorts. They concluded that this effect of Medicare coverage on informal caregiving had implications for patient function and caregiver burden, and should be considered in episode-based reimbursement models that alter professional rehabilitative care intensity.
AHRQ-funded; HS000053.
Citation: De Roo AC, Ha J, Regenbogen SE .
Impact of Medicare eligibility on informal caregiving for surgery and stroke.
Health Serv Res 2023 Feb; 58(1):128-39. doi: 10.1111/1475-6773.14019..
Keywords: Medicare, Caregiving, Surgery, Stroke, Cardiovascular Conditions
Leyenaar JK, Tolpadi A, Parast L
Collaborative to increase lethal means counseling for caregivers of youth with suicidality.
The authors implemented an eight-hospital quality improvement collaborative with the goals of an absolute increase in hospitals' mean rate of caregiver lethal means counseling (LMC) and evaluating the effectiveness of the collaborative on LMC. The collaborative used a structured process of alternating learning sessions and action periods to improve LMC; electronic medical record documentation of LMC were evaluated during three phases: precollaborative, active collaborative, and postcollaborative. Findings showed that LMC increased during the collaborative but did not exceed expected trends. The authors concluded that interventions developed by the participating hospitals may be beneficial to improve LMC for caregivers of hospitalized youth with suicidality.
AHRQ-funded; HS025291.
Citation: Leyenaar JK, Tolpadi A, Parast L .
Collaborative to increase lethal means counseling for caregivers of youth with suicidality.
Pediatrics 2022 Dec 1;150(6):e2021055271. doi: 10.1542/peds.2021-055271..
Keywords: Children/Adolescents, Caregiving, Behavioral Health
Keita Fakeye MB, Samuel LJ, Wolff JL
Financial contributions and experiences of non-spousal, employed family caregivers.
Investigators examined out-of-pocket spending among employed, retired, and unemployed caregivers. Using data from the 2015 National Health and Aging Trends Study (NHATS) and the National Study of Caregiving, they found that employed caregivers incur more out-of-pocket spending on caregiving than retired and unemployed counterparts. They concluded that caregiving exacerbates economic well-being among employed caregivers, particularly for those with socioeconomic vulnerability.
AHRQ-funded; HS000029.
Citation: Keita Fakeye MB, Samuel LJ, Wolff JL .
Financial contributions and experiences of non-spousal, employed family caregivers.
J Appl Gerontol 2022 Dec;41(12):2459-68. doi: 10.1177/07334648221115261..
Keywords: Elderly, Caregiving, Healthcare Costs
Klawetter S, Cetin N, Ilea P
"All these people saved her life, but she needs me too": understanding and responding to parental mental health in the NICU.
The purpose of this qualitative study was to examine the mental health needs of parents of infants in a neonatal intensive care unit (NICU), and the challenges and solutions to meeting those needs. Through interviews with 15 parents and staff at a level IV NICU in the United States, the study found: the relationship between staff and parents filter protect from trauma and distress; information needs and mental health needs change over time, a lack of continuity of care affects response to mental health concerns, and NICU plays a critical role in addressing the mental health of parents. The researchers concluded that mental health support should be integrated into and customized to the entire NICU trajectory, with emphasis on parents living in rural locations and non-English-speaking parents.
AHRQ-funded; HS026370.
Citation: Klawetter S, Cetin N, Ilea P .
"All these people saved her life, but she needs me too": understanding and responding to parental mental health in the NICU.
J Perinatol 2022 Nov;42(11):1496-503. doi: 10.1038/s41372-022-01426-1..
Keywords: Caregiving, Newborns/Infants, Critical Care, Intensive Care Unit (ICU), Behavioral Health
Semere W, Kaplan L, Valle K
Caregiving needs are unmet for many older homeless adults: findings from the Hope Home study.
Researchers described characteristics of older homeless-experienced adults with caregiving need and determined factors associated with having unmet need. Using data from the longitudinal study, Health Outcomes in People Experiencing Homelessness in Older Middle Age (HOPE HOME), they found that better self-rated health and being a man were associated with higher odds of unmet need. Moderate or high-risk substance use was associated with lower odds of unmet need. They recommended interventions that increase caregiving access for homeless-experienced individuals in order to avoid poor health outcomes and costly long-term-care needs due to untreated disabilities.
AHRQ-funded; HS027844.
Citation: Semere W, Kaplan L, Valle K .
Caregiving needs are unmet for many older homeless adults: findings from the Hope Home study.
J Gen Intern Med 2022 Nov;37(14):3611-19. doi: 10.1007/s11606-022-07438-z..
Keywords: Elderly, Vulnerable Populations, Caregiving, Access to Care
Lindly OJ, Cabral J, Mohammed R
AHRQ Author: Mistry KB
"I don't do much without researching things myself": a mixed methods study exploring the role of parent health literacy in autism services use for young children.
This mixed-methods study examined how parent health literacy contributes to health-related outcomes for children with autism. This study included 82 US parents of a child with autism 2-5 years old and sought to describe (1) health literacy dimensions, (2) how health literacy influences services use, and (3) health literacy improvement strategies. The authors found that: autism information was accessed from multiple sources; understanding autism information involved "doing your own research"; autism information empowered decision-making; health literacy facilitated behavioral services use; health literacy influenced medication use; family and system characteristics also affected services use; autism education remains needed; services information is needed across the diagnostic odyssey; and greater scientific information accessibility would increase uptake.
AHRQ-authored; AHRQ-funded; HS000063.
Citation: Lindly OJ, Cabral J, Mohammed R .
"I don't do much without researching things myself": a mixed methods study exploring the role of parent health literacy in autism services use for young children.
J Autism Dev Disord 2022 Aug;52(8):3598-611. doi: 10.1007/s10803-021-05240-0..
Keywords: Children/Adolescents, Autism, Caregiving, Health Literacy
Lindly OJ, Shui AM, Stotts NM
Caregiver strain among North American parents of children from the Autism Treatment Network Registry Call-Back Study.
This study showed on average caregiver strain did not significantly change in North American parents of children with autism during a 2-year period. Improved caregiver strain was found to be linked to improved child functioning and behavior. Recommendations included routine assessment of caregiver strain, and referral to evidence-based programming and supports in order to help alleviate some of the burden that families of children with autism commonly experience.
AHRQ-funded; HS000063.
Citation: Lindly OJ, Shui AM, Stotts NM .
Caregiver strain among North American parents of children from the Autism Treatment Network Registry Call-Back Study.
Autism 2022 Aug;26(6):1460-76. doi: 10.1177/13623613211052108..
Keywords: Autism, Caregiving, Children/Adolescents
Beeber AS, Hoben M, Leeman J
Developing a toolkit to improve resident and family engagement in the safety of assisted living: Engage-A stakeholder-engaged research protocol.
This paper describes an AHRQ-funded study protocol (Engage) to develop a toolkit for increasing resident and family engagement in assisted living (AL) safety. The study goals are to engage AL residents and family caregivers, AL staff, and other AL stakeholders to (1) identify common AL safety problems; (2) prioritize safety problems and identify and evaluate existing PFE interventions with the potential to address safety problems in the AL setting; and (3) develop a testable toolkit to improve PFE in AL safety. Methods, including qualitative interviews, a scoping review of persona and family engagement (PFE) interventions, and stakeholder panel meetings are discussed. The authors also detail how the protocol was modified to address the unique challenges of the COVID-19 pandemic.
AHRQ-funded; HS026473.
Citation: Beeber AS, Hoben M, Leeman J .
Developing a toolkit to improve resident and family engagement in the safety of assisted living: Engage-A stakeholder-engaged research protocol.
Res Nurs Health 2022 Aug;45(4):413-23. doi: 10.1002/nur.22232..
Keywords: Patient and Family Engagement, Patient Safety, Caregiving, Public Health, Long-Term Care
Gaugler JE, Rosebush CA, Zmora R
Outcomes of remote activity monitoring for persons living with dementia over an 18-month period.
The purpose of this study was to evaluate whether Remote Activity Monitoring (RAM) technology was associated with reductions in negative health transitions and service utilization for persons with Alzheimer's disease or a related dementia over an 18-month period. The researchers enrolled 88 recipients and their caregivers in a clinical trial, with 88 care recipients and their caregivers in the RAM intervention arm and 91 care recipients and their caregivers in the control arm. The treatment group had the RAM system installed in their home. The attention control group did not receive RAM technology. Baseline and follow-up surveys assessed whether the care recipient had fallen or wandered in the past 6 months (yes/no). Caregivers were also asked whether the care recipient had used any of the following healthcare services in the past 6 months: nursing home stays, assisted living stays other residential care stays, hospital stays, or emergency room visits. The study found that in adjusted models, emergency department visits were almost 50% lower in the intervention group compared with the control group. In addition, the odds of experiencing a higher frequency of falls versus a lower frequency of falls was 0.36 for those in the intervention group compared with controls. The RAM technology did not have a statistically significant effect on any other outcome. The researchers concluded that although RAM did not provide direct support for the management of behaviors for persons with AD/ADRD, the findings imply that this technology may prevent some adverse health events for people living with dementia in the community. The ongoing, unobtrusive monitoring and system alerts of RAM may have resulted in caregivers identifying activity or the lack thereof that may
have prevented falls and wandering events. In turn, emergency room use among persons with dementia may have been avoided.
have prevented falls and wandering events. In turn, emergency room use among persons with dementia may have been avoided.
AHRQ-funded; HS022836.
Citation: Gaugler JE, Rosebush CA, Zmora R .
Outcomes of remote activity monitoring for persons living with dementia over an 18-month period.
J Am Geriatr Soc 2022 Aug;70(8):2439-42. doi: 10.1111/jgs.17839..
Keywords: Elderly, Dementia, Neurological Disorders, Telehealth, Health Information Technology (HIT), Outcomes, Caregiving