Caregiving Behavior Research Articles

Exploring the Caregiver Experiences of Symptom Management in Children With Cancer: A Qualitative Systematic Review

ABSTRACTAlthough caregivers of children with cancer play an instrumental role in managing their child's symptoms, the impact of their own experiences or perspectives is under‐explored. Understanding these factors is essential as they influence caregiving behaviors and overall well‐being. This qualitative systematic review addresses this knowledge gap by synthesizing existing research on caregiver's experiences. The review is reported according to the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. Two reviewers utilized Rayyan to screen titles and abstracts retrieved from comprehensive keyword searches of five databases including CINAHL, APA PsycINFO, Embase, and MEDLINE. Databases and bibliographies were hand‐searched for additional articles. One reviewer completed full text assessment and data were extracted into an Excel spreadsheet. The Quality Assessment with Diverse Studies tool was used to appraise included studies. Thematic content analysis was used to synthesize findings, which are presented narratively. Twelve articles are included, representing the experiences of 597 caregivers, most of which (83%) were undertaken in high‐income nations. Quality appraisal scores indicated all studies were of moderate to robust quality. Three main themes were identified including: (1) caregivers as protectors in their role, (2) normalization of symptoms yet they remain disrupting, and (3) communication between the caregiver and child. Findings emphasize the importance of formalized information provision and education to better support caregivers in managing their child's cancer‐related symptoms. Nurses are uniquely positioned to provide this essential support thereby improving the quality of life for both caregivers and children.

Child Fatalities Resulting From Caregiver Behavior: A Public Health Approach to Child Maltreatment Classification.

Limited research describes approaches for applying a public health lens to fatal child maltreatment classification. Specialized terminology and tools could help improve consistency in classifying deaths resulting from caregiver behavior. A six-criterion classification tool was developed via expert panel review of over 100 child deaths by the Alaska Division of Public Health's Child Death Review (CDR) program. Next, accuracy and acceptability were assessed by inviting staff from other CDRs using a national listserv to classify 21 brief case scenarios with the tool. Among the 47 respondents, sensitivity was 0.87, specificity 0.77, and accuracy 0.84. Variability by tool criterion ranged from 97% to 74% accurate. Most respondents (66%) reported the tool as being helpful for classifying deaths and moderate reliability was found. Study participants found it difficult to consistently apply specific criteria which resulted in a modification of the tool to improve the potential for universal adoption.

Perceptions of Relationships with Kinship Caregivers Among Parents Following State-Detected Psychoactive Substance Use

SYNOPSIS Objective. This study sought to better understand parent relationships with kinship caregivers, with an eye toward parents’ perceptions of how kinship caregiver mindsets and behaviors surrounding substance use may have impacted parents. Design. Data came from transcripts of in-depth, semi-structured interviews with 16 parents in the United States, who had substantiated child welfare cases related to substance use. Transcripts were dual-coded, and analysis was guided by the reflexive thematic analysis framework. Results. Parents described two different experiences with kinship caregivers. For some families, parents reported fragmentation of their support system; parents described caregivers as undermining their parental authority, disrupting attachment bonds, and communicating with children in ways that perpetuated stigma around substance use. Other parents reported increased cohesion among family members; parents described caregivers as supportive and empowering, particularly as they navigated mandated “recovery.” Conclusions. Findings offer insights to help inform decision-making by both practitioners and policymakers by giving a voice to parents as they navigate the complex systems of child welfare services and drug court programming.

Caregivers' cognitions about infants' mental and emotional states

AbstractGiven the relevance of caregivers' perceptions, cognitions, and emotions about their child's mental states for caregiving behavior and children's development, researchers from multiple theoretical perspectives have developed constructs to assess caregivers' cognitions, resulting in a large but scattered body of literature. In this article, we highlight the conceptual overlap among and uniqueness of six constructs assessing caregivers' cognitions about their child at 36 months and younger: infant intentionality, mental representations, mind‐mindedness, parental embodied mentalizing, parental empathy, and parental reflective functioning. We define constructs, present approaches to measurement, and propose elements of importance that fall under the umbrella of caregivers' cognitions and that may be associated differentially with children's early cognitive and social–emotional development. We conclude with recommendations for researchers aiming to capture caregivers' cognitions about their child's mental states, whether focusing on one of the six reviewed constructs or on specific elements (e.g., awareness of the child's mind or accuracy of caregivers' perceptions of their child) under the umbrella of caregivers' cognitions.

Prenatal representations link pregnancy intention to observed caregiving

ABSTRACT Aims/Background Children from unintended pregnancies are at an increased risk of experiencing less positive parenting practices as well as abuse and neglect. Thus, identifying factors that may explain the association between pregnancy intention and caregiving behaviours is critical, as well as identifying if these associations can be assessed during pregnancy. Design/Methods In a sample of 297 pregnant people (Mage = 31.17, SD = 4.89; gestational age range 9.71–35.14, M = 23.55, SD = 5.54) and, later, their 6-month-old infants, this prospective study examined the degree to which two facets (i.e. acceptance and richness of perceptions of the child and their role in being a parent for that child) of caregivers’ prenatal mental representations of the child explained the association between pregnancy intention and the caregiver behaviour observed during caregiver – child interactions in infancy. Results Results indicated that caregiver–child interactions following pregnancies that were intended, relative to those non-intended, were rated as higher in caregiving sensitivity and warmth. These relations were explained, in part, by a greater richness of perceptions, but not through acceptance. Conclusion Findings suggest richness of perceptions as a potential target for exploration in interventions to support pregnant people who were not intending to become pregnant as a means to promote positive caregiver – child relationships.

Information seeking behaviour of informal caregivers at the premier tertiary teaching hospital in Nigeria

This study was conducted to examine the information behaviour of informal caregivers in a university college hospital in Ibadan, Nigeria. Informal caregivers in the teaching hospitals constitute critical pubic health care players whose information behaviours have not been studied. Data was collected from 208 caregivers using a questionnaire that consisted of structured and open-ended questions. The study found that healthcare providers were the primary source of health for caregivers, with 34.1% actively seeking information from them. The caregivers seldom utilised sources like the internet, community organizations, books, family, and friends. The preference for healthcare providers as sources is due to their accessibility and ability to provide prompt and accurate answers. Caregivers have diverse information needs, including medication-related information, first aid techniques, nutrition, exercise, mental health, and lifestyle choices. They seek this knowledge to make informed decisions that improve their loved ones’ well-being. The study also revealed that caregivers heavily rely on information technology for health information due to its accessibility and reliability. The study highlights the need for ongoing training and proactive information sharing by healthcare providers to better support informal caregivers in Nigeria, emphasizing the importance of integrated support systems within healthcare facilities. To meet diverse information needs, healthcare institutions should diversify dissemination strategies, including culturally sensitive materials and digital literacy programs, while developing tailored mobile applications and online support communities for caregivers. Policymakers must focus on creating supportive healthcare policies, funding caregiver programs, and expanding insurance coverage to alleviate financial burdens, ensuring that caregivers have access to necessary resources and information.

Maternal alexithymia and caregiving behavior: the role of executive functioning -A FinnBrain Birth Cohort study.

The growing interest in parental cognition calls for research clarifying how cognition interacts with other parenting determinants to shape caregiving behavior. We studied the interplay between executive functioning (EF; cognitive processes that enable goal-directed thinking and behavior) and alexithymic traits (characterized by emotion processing/regulation difficulties) in relation to emotional availability (EA; the dyad's ability to share an emotionally healthy relationship). As EF has been reported to shape parents' ability to regulate thoughts and emotions during caregiving, we examined whether EF moderated the association between maternal alexithymic traits, and EA. Among 119 mothers with 2.5-year-olds drawn from the FinnBrain Birth Cohort, EF was measured with Cogstate tasks, alexithymic traits with the Toronto Alexithymia Scale (TAS-20), and caregiving with the Emotional Availability Scales (EAS). More alexithymic traits on the TAS-20 subscale Externally Oriented Thinking (EOT) were associated with poorer caregiving in a hierarchical regression analysis (ΔR2 = 0.05, p = .01). A marginally significant moderation effect was found when adding the EOTxEF interaction term to the model (ΔR2 = 0.03, p = .06). These associations weakened slightly when controlling for education level. Estimation of simple slopes and a Johnson-Neyman figure indicated a significant association between higher EOT and lower EAS, that increased in strength as EF decreased from the group mean level. The influence of cognitive alexithymic traits on EA could be especially pronounced among low EF parents, but further studies are needed to support and extend the findings. The potential role of parental reflective functioning in this context is discussed.

Alloparental behaviour of an adult male Rhesus Macaque (Macaca mulatta)

We report an unusual case of caregiving by an adult male rhesus macaque (Macaca mulatta) at Sur Sarovar Bird Sanctuary, India. Observations from 7th June to 15th July, 2024 followed the adult male engaged in behaviors typically associated with female macaques, such as carrying, grooming, and protecting an infant male. Despite his aggressive interactions with other macaques, the adult male exhibited significant nurturing behaviors, including allowing the infant to suck from his nipple and maintaining close physical proximity for protection. These findings expand on previous research by demonstrating that male rhesus macaques can exhibit rare but impactful caregiving behaviors, underscoring the need for further investigation into such atypical male-infant interactions.

A common neural response to perceiving but not implicitly regulating infant and adult affect in postpartum mothers

ABSTRACT The transition to parenthood requires parents develop caregiving behaviors, such as the ability to identify their infant’s emotions and regulate their own emotional response. Research has identified patterns of neural activation in parenting contexts that are interpreted as socioemotional processing. However, no prior research has directly tested whether mothers’ neural responses to their infant’s affect are the same as those involved in emotion perception/experience and regulation in other contexts. We employed conjunction analyses to clarify which components of mothers’ neural response to viewing their infant’s affect are shared with passively viewing and labeling adult affective faces (emotion perception/experience and implicit emotion regulation, respectively) in 24 mothers three months postpartum. Our results support a common neural response to viewing infant and adult affect in regions associated with emotion perception/experience (bilateral hippocampi, amygdalae, thalami, orbitofrontal cortex, and ventrolateral prefrontal cortex), but no areas of common response to viewing negative infant affect and implicitly regulating negative adult affect outside of the occipital lobe and cerebellum. This study provides corroborating evidence for shared neural patterns being involved in perceiving/experiencing infant and adult affect but not implicit regulation of infant and adult negative affect.

Maternal childhood trauma, caregiving behavior, and child cognitive development in the context of drug addiction.

Exposure to childhood trauma confers intergenerational risk on child development. However, the mechanism linking a mother's childhood trauma with her child's cognitive development remains poorly understood. This study recruited 71 mother-child dyads affected by substance use disorder from local, community-based, outpatient substance use treatment programs. Maternal exposure to childhood trauma, caregiving behavior, and child cognitive development were assessed in each mother-child dyad. These were measured through a comprehensive biopsychosocial interview, an observed dyadic interaction coded using the Coding Interactive Behavior system, and the Bayley Scales of Infant and Toddler Development, Screening Test, respectively. We hypothesized that compromised caregiving behavior would mediate a negative relationship between maternal childhood trauma and child cognitive development. Analyses did not support this hypothesis. Specifically, maternal childhood trauma was not significantly associated with child cognitive development nor the four dimensions of maternal caregiving behavior. However, caregiving behavior (specifically maternal sensitivity and limit setting) was associated with child cognitive development, when controlling for maternal childhood trauma and child age. The lack of associations observed suggests that protective factors may buffer the intergenerational impact of childhood trauma. Furthermore, the relationship between quality of caregiving and child cognitive development highlights the importance of interventions which foster sensitive caregiving behaviors that may bolster child cognitive development in the context of maternal substance use disorder and maternal childhood trauma. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Selective Feeding-An Under-Recognised Contributor to Picky Eating.

Background: Amongst children presenting to an interdisciplinary clinic with complaints of picky eating, we aim to identify the proportion who have underlying selective feeding and to describe its implications on growth and nutrition, as well as parental coping responses. Methods: We conducted a retrospective chart review of first-visit consults from January 2020 to July 2022. Caregiver and child mealtime behaviours were assessed using the standardised Caregiver's Feeding Styles Questionnaire (CFSQ) and by direct observation. Caloric intake and oromotor skills were assessed by dietitians and speech therapists, respectively. Medical concerns were addressed by the doctor. Results: Out of 152 children referred for concerns of "picky eating", 128 (84.2%) were diagnosed as having selective eating, while the rest were diagnosed with delayed oromotor skills, poor appetite, oral aversion and 4 were deemed to have normal feeding behaviour for their age. Of the 128 selective eaters, 67 (52%) children had comorbidities such as autism spectrum disorder (ASD) (n = 59), attention-deficit/hyperactivity (ADHD) (n = 2) and underlying medical conditions (n = 6). The remaining 61 children were "otherwise well". Of the "otherwise well" children, 47.5% had inadequate caloric intake and 31% had failure to thrive. The commonest feeding style among caregivers of "otherwise well" picky eaters was authoritarian (36%). The majority (80%) of these caregivers also experienced helplessness. Conclusions: We conclude that picky eating in young children is a symptom with several possible underlying aetiologies. It is associated with nutritional consequences for the child and significant stress on caregivers. Being able to recognise those who need referral for specialist intervention and multidisciplinary management (such as selective feeding and delayed oromotor skills) would be important.

Caregiver burden, religious coping, and spiritual well-being among caregivers of elderly stroke patients and predictors affecting spiritual well-being.

Stroke is a disease that affects the arteries leading to and within the brain. Stroke usually creates a range of disabilities such as physical deficits and difficulty in performing daily activities. These long-term needs and the continuous caregiving sequence affect the care burden and spiritual well-being of caregivers. The correlational study population consisted of caregivers of stroke older patients (N = 100). Burden Interview Scale, Spiritual Well-Being Scale and Religious Coping Scale were used. Descriptive analyses, independent sample t-test, one-way analysis of variance, correlation, regression analyses were used to evaluate the data. The mean age of caregivers was 48.38 ± 13.52 years. The score of Burden Interview Scale was 31.41 ± 15.13 (light/moderate), Negative Religious Coping was 7.39 ± 3.17 (moderate), Positive Religious Coping was 24.30 ± 4.34 (high), and Spiritual Well-Being was 21.65 ± 6.73 (low). There is a significant relationship between Burden Interview and Negative Religious Coping (r = 0.274; P = 0.006), Burden Interview and spiritual well-being (r = -0.563; P = 0.000), and spiritual well-being and positive religious coping (r = 0.228; P = 0.026). The predictors that affect the spiritual well-being of caregivers were found to be Burden Interview (β = -0.571) and Positive Religious Coping (β = 0.181) (P < 0.05). Nurses play an important role in increasing the spiritual well-being levels and religious coping behaviours of caregivers. Nurses should communicate empathically with caregivers, understand their feelings, and provide emotional support.

Changes in healthcare seeking behaviors among caretakers of children in the previously occupied ISIS territory: Hadeetha, Anbar, Iraq: a cross-sectional survey of 415 households.

The western province of Anbar, and the district of Hadeetha, have suffered direct impacts from the second United States led invasion (2003) through the ISIS invasion (2014-2017). With the primary health care centers being closed or inaccessible, the remaining population experienced changes in health seeking. The area of Anbar, Iraq remains largely remote from the discourse of health system recovery post-conflict. The objective of this study was to describe changes in health seeking behaviors of caregivers of children ages 12-72months of age in Hadeetha, Anbar, Iraq from the conflict period of ISIS (Islamic State of Syria and Iraq), 2014-2017, to the post-conflict period, 2021. This was a mixed-methods study composed of a cross-sectional 415 household survey and focus groups in Hadeetha, Anbar, Iraq. Caretakers of children were interviewed from February to April 2021. Children were sampled from a list of children who missed at least one vaccination appointment without a return for follow-up from the birth cohorts of 2014 to 2020. Healthcare workers focus groups and key informant interviews occurred from 2019 to 2021 centered around experiences from the 2014 to 2021 period. In the post-conflict period, there were no differences in health seeking based upon provider type between respondents. Physicians were primary healthcare providers in the post-conflict period for 79% of respondents versus only 47% in the conflict period. Healthcare workers described major barriers to delivering services in Hadeetha during the ISIS occupation due to infrastructure damage, threats of violence, decreased medical personnel, lack of compensation and disruptions in medical supplies from 2014 to 2017. This study provides insight into health seeking challenges among the many individuals who remained in Hadeetha during the ISIS occupation. Health use patterns by provider type mirror the concerns the healthcare providers shared: limited availability, efflux of professional workers, limited resources and security challenges to providing care. Positive trends toward increased access to physicians during periods of peace are an encouraging marker for continued population resilience during the post-conflict period. Recovery efforts continue to be hampered by internal sectarian discord within Iraq as well as insufficient resources to maintain health services as well as provide catch-up health services, such as immunizations.

Cat Caring Behaviors and Ownership Status of Residents Enrolling a Cat in a Free Sterilization Program.

Most cats entering animal shelters in Australia are less than 12 months old and emanate from low socioeconomic areas. Many are unidentified and may be either owned or semi-owned cats (cats cared for by someone who does not consider themselves the owner). In Australia, approximately 33% of cats entering shelters and pounds are euthanized annually, adversely affecting the mental health of staff involved. Our study investigated cat ownership and caregiving behaviors of cats enrolled in the Australian Pet Welfare Foundation's Community Cat Program, which included free sterilization, microchipping, and preventive healthcare. The suburbs targeted in Ipswich, Australia had a high per capita cat intake into animal shelters. We surveyed 1094 cat owners and semi-owners. Most cats were under 12 months old (79%), primarily domestic short-haired (69%), and acquired through informal channels such as friends, family, or as strays. Veterinary care was limited, with only 15% of cats having visited a veterinarian and 28% being vaccinated. Prior to hearing about the free sterilization program, 88.5% of participants identified as owners, while 11.5% were semi-owners. Before completing the survey, these semi-owners transitioned from an informal caregiving relationship to becoming owner of the cat/s. Of the semi-owners, 93% indicated that their transition to ownership was driven by feelings of responsibility, emotional attachment, and access to free sterilization services. These findings suggest that targeted interventions, such as accessible veterinary care and sterilization programs, are crucial in encouraging semi-owners to take full ownership of cats, improving cat welfare, and reducing unplanned breeding. Supporting this transition helps curb overpopulation and fosters improved caregiving, benefiting both cats and communities.

Factors Influencing Meal Provision and Dietary Support Behaviour of Caregivers of People with Chronic Kidney Disease: A Cross-Sectional Study.

Caregivers play an important role in supporting care recipients to navigate their health needs, including adherence to dietary recommendations, which are complex and multifaceted. This study aims to (i) describe the nutrition knowledge of caregivers of people with chronic kidney disease (CKD), and (ii) explore caregivers' perceptions of their role in providing healthy meals and nutrition support for care recipients. A cross-sectional study design employed a multi-strategy research approach. Caregivers (n = 78) of people with stage 1-5 CKD or post-transplant were recruited from a single centre. Their nutrition knowledge was assessed quantitatively with the revised General Nutrition Knowledge questionnaire. Theory-informed semi-structured interviews of a sub-sample (n = 12) qualitatively explored caregiver perceptions. Most caregivers were female (75.6%) and cared for a male care recipient (87%; aged 74 (66; 80) yrs.). The caregivers (75.6%) provided a meal ≥6 times/week to their care recipient and had moderate nutrition knowledge (66.1 (60.5; 73.9)%). Four themes emerged describing the caregivers' perceptions of meal provision and nutrition support, including the following: (i) food literacy skills are valued; (ii) social support is important; (iii) caregivers' sense of social responsibility; and (iv) the management of complex and multifaceted dietary needs. The caregivers had moderate nutrition knowledge; they wanted to provide healthy meals and support to their care recipients to adhere to dietary recommendations. Targeted, co-designed nutrition education programs for caregivers may enhance nutrition care delivery to people with CKD.

Stress and Coping Behavior Exhibited by Family Members Toward Long-Term Care Facility Residents While Hospitalized.

With the increase in the elderly population, institution-based care has become another option for elderly people. In Changhua, Taiwan, the number of long-term institutions has doubled in the past decade, and more families are choosing to send their elders to institutions for care. However, there is stress induced by having to care for these elders when they come back to their family members when hospitalized. Therefore, this study aimed to understand the stress and coping behaviors of family members in regard to hospitalized long-term care facility residents and identify relevant factors that affect and predict the stress and coping behaviors exhibited by these family members. In this study, a quantitative and cross-sectional survey was conducted using the convenience-sampling method; family members of long-term care facility residents hospitalized in a regional hospital in central Taiwan were selected as the research participants and a total of 162 family members were admitted. The data were collected in the form of questionnaires including basic information and data on the stress and coping behaviors of the family members. The data were collected and coded by using SPSS 22.0 to perform descriptive and inferential statistical analysis. The standard average score of total stress for family members was 57.03 points, which corresponds to a moderate level. The four perceptions of stress by family members were, in order, physiological, life, psychological, and economic. Furthermore, family income, work status, and the relationship between residents of the family members and physiological, psychological, and economic factors had predictive power for their problem-oriented coping behaviors, with an explanatory power of 59.6%. Life aspects, gender, marital status, and the number of hospitalizations in half a year had significant predictive power for the family members' emotion-oriented coping behaviors, with an explanatory power of 19.0%. The family members had high levels of stress, especially physical stress, and the total scores of stress perception were higher for those who were younger than 39 years old and had no rotating family members. Additionally, the coping behavior of the main caregiver was mainly problem-oriented. The results of this study may serve as a reference that can help nursing staff in clinical or long-term care facilities to provide or develop effective and individualized services for family members of facility residents.

Alzheimer's dementia in people with Down syndrome : Results of guideline-assisted expert interviews on healthcare deficits in the diagnostics and treatment as well as solution approaches

People with Down syndrome have agenetically increased risk of developing early onset Alzheimer's dementia. An interview study with healthcare providers, patient representatives and employees in residential and work facilities was conducted to identify deficits in the healthcare process and approaches to overcoming them. In this study 14 semi-structured interviews were conducted and analyzed using qualitative content analysis. Alack of knowledge and experience on the part of medical service providers in dealing with and providing medical care for people with Down syndrome was identified as akey challenge. In addition, the diagnosis of dementia in people with Down syndrome is difficult for various reasons (including lack of appropriate diagnostic tools in standard care and lack of time or financial resources). Doubts were expressed about the efficacy of antidementia medications and the reasons for the increased use of sedatives were discussed. Attentive observation of behavior and involvement of caregivers, regular review and reduction of polypharmacy and the use of alternative behavior modification techniques were mentioned as possible solutions. The identified deficits in the medical care of the target population and the approaches to solving them will be incorporated into the development of health policy recommendations in order to optimize the care situation of those affected in the long term.

Behavior of Common Swift Apus apus and House Martin Delichon urbicum towards a flying dummy

We tested for airborne epimeletic (care-giving) behaviour in Common Swift Apus apus towards young swifts during their first flight. Tests were performed where colonies of Common Swift and Western House Martin Delichon urbicum co-occur. Three variants of a flying dummy were used; two with pointed wings of which one entirely black (1) and one with partly white body (2). The third was black with broad wings (3). Reactions were documented on film. Swifts and martins had opposite reactions to dummies 1 and 2. As we anticipated, martins seemed supportive in a test with dummy 2 and seemed to “guide” the dummy epimeletically. However, a swift approached dummy 2 in a support-like attempt, but deviated after a close look. In a test with dummy 3, swifts acted highly hostilely. We discuss reasons for these outcomes and the importance of dummy appearance. We illustrate the flight paths of the dummy, swifts and martins with trajectories, and the behaviour of the Western House Martin is shown in stepwise larger magnification stills of a video.

Adherence to referral advice and its associated factors among community drug distributors and caregiver during SMC implementation in nine states

BackgroundMalaria is a global public health problem that disproportionately affects under-five children in poor resource countries. Nigeria accounted for the highest burden of malaria in Western Africa. Thus, seasonal malaria chemoprevention (SMC) programmes have been recommended and have been implemented across 9 states (Bauchi, Borno, FCT, Kebbi, Kogi, Nasarawa, Plateau, Oyo and Sokoto) in Nigeria. The study aims to measure the adherence to referral protocol and its associated factors among community drug distributors (CDs) and caregivers during SMC implementation in nine states.MethodsThe data of caregiver-child pairs that were identified with fever during the cycle one SMC implementation was extracted from the End-of-cycle (EoC) surveys carried out following cycles one SMC implementation in the study states. The surveys were completed within two weeks of the completion of SMC cycle one. Mixed-effects multivariable logistic regression models were fitted to explore the factors associated with adherence to referrals among caregivers-child pairs.ResultsThe socio-demographic characteristics of caregiver considered in the model were not found to be significantly associated with children down with fever taking to hospital for treatment, however the caregiver whose child was referred by CDs had significantly higher odds of seeking healthcare compared to those that were not referred (OR: 1.892, 95% CI 1.081–3.310, p = 0.025). There are higher odds of children seeking treatment among those that were referred by CDs.ConclusionThe study's findings shed light on the adherence to referral advice and the factors influencing caregiver behaviour during SMC implementation. Referral of sick child during SMC campaign appears to ensure health-seeking for malaria case management among caregivers-child peer in target communities.

Caregivers' and nurses' perceptions of the Smart Discharges Program for children with sepsis in Uganda: A qualitative study.

Sepsis arises when the body's response to an infection injures its own tissues and organs. Among children hospitalized with suspected sepsis in low-income country settings, mortality rates following discharge are high, similar to mortality rates in hospital. The Smart Discharges Program uses a mobile health (mHealth) platform to identify children at high risk of post-discharge mortality to receive enhanced post-discharge care. This study sought to explore the perceptions and experiences of the caregivers and nurses of children enrolled into the Smart Discharges Program and the program's effect on post-discharge care. We conducted an exploratory qualitative study, which included in-person focus group discussions (FGDs) with 30 caregivers of pediatric patients enrolled in the Smart Discharges Program and individual, semi-structured interviews with eight Smart Discharges Program nurses. The study was carried out at four hospitals in Uganda in 2019. Following thematic analysis, three key themes pertaining to the Smart Discharges program were identified: (1) Facilitators and barriers to follow-up care after discharge; (2) Changed caregiver behavior following discharge; and (3) Increased involvement of male caregivers. Facilitators included telephone/text message reminders, positive nurse-patient relationship, and the complementary aspects of the program. Barriers included resource constraints and negative experiences during post-discharge care seeking. With regards to behavior, when provided with relevant and well-timed information, caregivers reported increased knowledge about post-discharge care and improvements in their ability to care for their child. Enrolment in the Smart Discharges Program also increased male caregiver involvement, increased provision of resources and improved communication within the family and with the healthcare system. The Smart Discharges approach is an impactful strategy to improve pediatric post-discharge care, and similar approaches should be considered to improve the hospital to home transition in similar low-income country settings.