Wing clipping does not make birds safer: Caregiver perceptions, practices, and associated risks in Brazil

Schizophrenia, as a stressful diagnosis, profoundly impacts the whole family, especially people with schizophrenia and their caregivers. This study tested the potential mediating role of expressed emotion in the association between mental health stigma and quality of life in caregiver-patient dyads. Using a 2-wave longitudinal design with a 6-month interval between assessments, 161 dyads of patients with schizophrenia and their family caregivers (one patient and one caregiver) completed measures of mental health stigma, expressed emotion, and quality of life. The results showed that patients' self-stigma had no significant actor or partner effect on expressed emotion or quality of life. In contrast, caregivers' stigmatizing attitudes toward patients had a significant partner effect on patients' perception of caregivers' expressed emotion and quality of life. The mediating effect of patients' perception of caregivers' expressed emotion in the association between caregivers' stigmatizing ideas toward patients and patients' quality of life was significant. By focusing on the interdependence of patients and their caregivers, this study highlights the role of caregivers' stigmatizing attitudes toward patients and patients' perception of caregivers' expressed emotion on patients' quality of life. Psychoeducation and interventions should not only aim to reduce the self-stigma of people with schizophrenia but also their caregivers' stigmatizing ideas toward patients. Family interventions targeted at reducing the EE level of caregivers and patients' perception of caregivers' EE would also benefit the adaptation and quality of life of people with schizophrenia and their caregivers.

BackgroundThis exploratory study applied Q methodology to identify the types of family caregivers of older adults in nursing homes during the COVID-19 pandemic based on their perceptions of the caregiving role and explore each type’s characteristics.MethodsQ statements were derived from in-depth interviews and a review of prior research. Q sorting was conducted using 39 P samples on a nine-point scale to determine Q distributions according to the degree of subjective agreeableness for each statement. In-depth interviews were conducted to determine why the subjects rated statements on either extreme.ResultsFour types of family caregivers were identified as a result of an analysis using the PC QUANAL program: caregiving-positive type (type I), caregiving-ambivalent type (type II), nursing home dependent type (type III), and caregiving conflict burnout type (type IV).ConclusionThe study results can help develop interventions and strategies based on perceptions of caregiving and their associated characteristics to provide psychological support to family members of older adult care home residents during the COVID-19 pandemic. Accordingly, the following measures are recommended: continuous follow-up research on specific measures facilitating communication between nursing home staff and family caregivers in the event of a pandemic; development of tools for measuring burnout risk among family caregivers and practical interventions for those at high risk; efforts to improve the image of older adult care homes and change the conventional perceptions of caregiving.

Introduction: Schizophrenia is a severe mental disorder that is characterized by impaired reality (hallucinations and delusions), inability to communicate, affect unnatural or blunt, cognitive disorders (not capable of abstract thinking) and had difficulty doing daily activities. Normally, the family is most affected by the presence of people with schizophrenia in their families. The purpose of this study was to develop an adaptation model of the caregiver in caring for family members with schizophrenia in Kediri.Methods: This study used cross-sectional design with nature explanatory research. Data were collected using a questionnaire on 135 respondents in nine health centers in the city of Kediri region. The sampling technique used simple random sampling. For data analysis and test, the feasibility used a test model of SEM with AMOS program 19.Results: The results showed self esteem caregiver (-0.25 <0.05), community resources (0.24 <0.05), self-efficacy (0.22> 0.05) , caregiver coping effort (12:17 <0.05), and the perception of caregiver about the family situation at this time (0:19 <0.05), which means that adaptation of caregiver in treating patients with schizophrenia is influenced by the characteristics of the family, namely community resources, self-efficacy, caregiver coping effort, self-esteem and perception of family caregiver to the conditions experienced at this time. Perception of caregiver about the condition of today's families is affected by stress, which appears on a caregiver stress due to stressor for caring for people with schizophrenia, especially the aggressive behavior of schizophrenics.Discussion: Adaptation of caregiver was highly influential in the care of people with schizophrenia because in this case becomes one of the important points to be able to sustain the process of treatment and prevent relapse of schizophrenics.

The aim of this study was to analyze the status quo and associated factors of care recipients' perceptions of caregivers' willingness to provide care among disabled older adults in China. Thus, this study contributes to our understanding of vulnerable older populations who are at a high risk of receiving support from informal caregivers who are unable or unwilling to take the caregiver role. We analyzed the cross-sectional data of 3,539 disabled older adults who received informal care at home from the seventh wave of the 2018 Chinese Longitudinal Healthy Longevity Survey (CLHLS). Multiple logistic regression models were used to examine the variables associated with the respondents' perceived caregivers' willingness to care from five aspects: respondents' sociodemographic attributes, health-related data, family endowment, access to health care services and community-based long-term care services (CBLTCS). This study found that the majority of disabled older adults (90.9%) had a positive attitude toward their caregivers' willingness to care and the care they received; however, 7.0% of the adults were concerned about their caregivers' ability to handle the care. Moreover, there was a small number of disabled older people (2.1%) who felt that their caregivers were reluctant to care or lacked patience. The results from the multiple logistic regression showed that disabled older adults with socioeconomic disadvantages (living in rural areas, being poor and with no children who frequently visited) or high demand (with severe disabilities or cognitive impairment) were more likely to consider that their caregivers needed respite care. Those adults with anxiety symptoms, a lower amount of care time, poor self-rated financial status and poor accessibility to health care services were more likely to report that their caregivers were reluctant to administer care. This study found that living in rural areas, being poor, with no children who frequently visited, severe disabilities or CI were positively associated the care recipients' perception that caregivers needed respite care. While anxiety symptoms, a lower amount of care time, poor self-rated financial status and poor accessibility to health care services were significantly associated with care recipients' perception of caregivers' reluctance to care. Our findings highlight the awareness of monitoring informal carers' willingness to care or capability to enact caring tasks.

ObjectiveTo identify caregiver cognitions and perceptions that may contribute to parenting stress among families of children with autism spectrum disorder (ASD) who receive treatment for severe behaviors.BackgroundCaregivers of children with ASD and comorbid problem behaviors often report significantly elevated stress, but contributors to this phenomenon are not well understood. Caregiver cognitions and perceptions potentially explain such high stress and, therefore, may represent a malleable intervention point that could positively affect treatment outcomes and whole family well‐being.MethodCaregivers seeking function‐based treatment for their children at a community‐accessible clinic (n = 29) completed standardized measures of parenting stress and of perceptions about ASD and about child behavior severity.ResultsParenting stress measured at intake did not differ between the Elevated and Within Normal Limits groups in terms of child or caregiver demographics, such as household income or ethnicity. However, caregiver negative feelings associated with an ASD diagnosis were significantly higher in the Elevated group, and caregivers in the Elevated group perceived their children's behaviors as more severe, even though all children were being treated for severe behavior problems.ConclusionFindings suggest that a key differentiator between parents who report elevated self‐reported stress at intake and those who do not are caregivers’ cognitive representations of their child's diagnosis and behavioral severity.ImplicationsAligned with psychological constructivism, understanding the role of caregivers’ perceptions among ASD‐affected families may aid in better tailoring interventions, which ultimately may improve treatment retention and enhance treatment outcomes.

Purpose. The purpose of the study is to explore the utility of the International Classification of Functioning, Disability and Health (ICF) when assessing caregivers' perceptions of interaction and factors related to interaction in non-speaking children with disability.Method. A questionnaire with focus on interaction and related factors was constructed by linking questions in existing instruments to ICF and was completed by 208 professionals and parents of 195 non-speaking children with disabilities in Russia. Caregivers' descriptions of interaction in open-ended questions were qualitatively analysed and compared to selected caregivers' ratings of children's functioning and environment in the questionnaire based on ICF.Results. In the open-ended questions about interaction the caregivers described modes of communication children used, situations in which interactions took place, positive and negative aspects of interactions. Thirty eight respondents described interaction with children negatively, 66 neutrally, and 76 positively. Statistical analyses revealed significant differences among the three groups of respondents concerning their ratings of children's functioning and environment in the ICF-based questionnaire.Conclusions. The ICF-related items in the questionnaire corresponded to caregivers' perceptions of interaction, which shows their relevance for the description of interactions. ICF is feasible in describing of interaction and interaction-related factors in non-speaking children with disabilities in Russia.

Introduction/Objectives:This paper reports on participant retention from an ongoing prospective, multi-site cohort caries risk study involving parent/infant pairs. The objectives were to: (1) compare the retention rates at each intermediate contact (every 4 months) and dental visit (every 18 months) across the 3 clinical sites, (2) assess primary caregivers’ perceptions at the end of the study about the retention efforts used in this longitudinal study, and (3) determine whether primary caregiver baseline demographic characteristics and child’s baseline caries experience were associated with retention.Methods:1325 primary caregiver-child pairs recruited at the child’s first birthday were followed for 36 months at 3 sites. Dental visits occurred at children’s ages of approximately 12, 30, and 48 months. Telephone/email intermediate contacts with the primary caregiver occurred 6 times between dental visits. The outcome variable was the retention rates at each dental visit and each intermediate contact. Primary caregivers’ perceptions of intermediate contacts were evaluated. Retention rates were compared by maternal age, race, ethnicity, Medicaid status, yearly household income, baseline caries experience (defined as decayed, missing due to caries, or filled tooth surfaces) at 12 months, and the number of teeth erupted.Results:1325 primary caregiver/infant pairs were enrolled and completed the first in-person dental visit, 1062 pairs (80%) completed the second visit and 985 (74%) completed the third. Most primary caregivers were female (94%), with a mean age of 29 years and 667 (50%) self-identified as White, 544 (41%) as Black, and 146 (11%) as Hispanic. The percentages of successful intermediate contacts were 95% at 4 months decreasing to 82% at 34 months. Almost all 964 (98%) of 985 primary caregivers reported at the last visit that they were comfortable/very comfortable with 4-month intermediate contacts. The multivariable analysis showed that primary caregivers who were older (OR = 1.07; 95% CI, 1.04-1.09) and White (OR = 1.52; 95% CI, 1.12-2.06) were more likely to complete the study.Conclusions:Retention strategies were focused on frequent routine contact and increasing monetary incentives. Those strategies may have resulted in retention exceeding the proposed goals. At the end of the study, primary caregivers were comfortable with the 4-month intermediate contacts.

The aim of this study was to qualitatively explore caregivers' perceptions of oral health care and factors influencing their work in a public long-term care institution for the elderly in Goiania, Brazil. Data were collected from a sample of 10 caregivers using personal in-depth interviews and observation. Caregivers were mainly nurses' aides without training in oral health care. Oral health was associated with access to dental treatment, oral hygiene and use of dentures. Edentulousness, use of inappropriate dentures and appetite loss were perceived as negative images. Procedures used for oral hygiene were toothbrushing, mouth cleaning with a gauze and using a mouthwash. Conflicting priorities in routine care, lack of caregivers' knowledge and the co-operation of the elderly were the main obstacles to satisfactory oral care. Oral health care of the elderly was perceived as a burden by caregivers, and did not follow a standard protocol. Caregivers' knowledge and perceptions reinforce the need for education and training in oral health issues.

The available literature shows quantitative studies on the management of antibiotics; however, few investigations describe the perceptions and experiences of family caregivers with a qualitative approach. To explore the perceptions of family caregivers who manage antibiotic medications at home. Qualitative, descriptive scope and cross section. The information was collected through semi-structured interviews with caregivers with relatives who have a chronic degenerative disease, and without studies related to health care. Antibiotics have limitations at the time of access, which influences the storage that families have in their homes, the storage characteristics lie on the site and not in the container. Caretakers do not check expiration dates; medicines are discarded without established measures. The perceptions of caregivers in rural contexts differ from those in the urban context. Caregivers participate in the medication management process and recognize that they can improve their practices, therefore, the perceptions of access, storage, use, and disposal are necessary for improvement proposals.

Traumatic brain injury (TBI) has contributed significantly to the burden of health care in many countries. The scarcity of resources in the public sector available for rehabilitation has caused many families to take responsibility for the care and rehabilitation of their family members who sustain a TBI. The roles of employers and caregivers in facilitating the return to work (RTW) process of individuals who sustained a TBI, is now commonly acknowledged. The aim of this study was to explore the perceptions and experiences of employers and caregivers of individuals with mild to moderate traumatic brain injury who are returning to work after completing a vocational rehabilitation program (VR), using the Model of Occupational Self-Efficacy (MOOSE). A qualitative research design was used to explore the experiences and perceptions of caregivers and employers of ten individuals who sustained a mild to moderate brain injury. Semi-structured interviews were completed and data analyzed according to thematic analysis. Five themes emerged: Themes one and two describe the employers' and caregivers' experiences and perceptions that hinder the RTW process. Theme three relates to the enabling aspects that the employers and caregivers, as well as the TBI individuals concerned, derive from engaging in the VR process. Themes four and five present the coping strategies that aid the employers and caregivers in playing an ongoing role in the RTW process. All ethical principles with regard to confidentiality, anonymity and informed consent were adhered to in the study. Occupational therapists (OT) using the MOOSE should regard employers and caregivers as key role players during therapy. Employers should have a better understanding of TBI and allow for sick leave to be granted to individuals with TBI during the rehabilitation process. Caregivers would benefit from establishing a support network for themselves, and by connecting with employers of the individuals with TBI in order to understand the their work environment.

Perceptions of Caregiving and Health Services Use amongKorean American Family Caregivers of Older Adults

The type of dental treatment that institutionalised elderly receive often depends on the decisions made by various stakeholders. These decisions may be based on a perceived need for treatment. This study was designed to investigate the perception of primary caregivers as to the relative importance of dental care for institutionalised seniors. Seniors who lived in a long-term care institution, with a dental facility available to them on a daily basis, volunteered information regarding their primary caregivers. A total of 25 primary caregivers participated in a structured telephone interview. All (100%) of the caregivers considered emergency dental services and treatment to relieve pain as essential/important services which should be available to institutionalised seniors. The following were most commonly ranked in the top three by the primary caregivers: emergency dental services (57%); dental services to relieve pain (48%); cleanings to prevent mouth disease (45%); check-ups including X-rays (45%); dentures to replace missing teeth (33%); and fillings (24%). The findings of this study suggest that more effort should be directed at investigating the perceived need of value of dental services for institutionalised seniors within the various stakeholders.

Long-term care demand for stroke survivors has increased in Bangladesh and other parts of the globe. Family caregivers play a significant role in continuing care for their relatives who are stroke survivors. Still, little is known about their experiences using long-term care services. This study explored the perceptions of Bangladeshi caregivers regarding long-term care use of family members with stroke. A qualitative descriptive study was carried out in the Rangpur division of Bangladesh between February and June 2020. A purposive sampling method was performed to select 15 participants from eligible family caregivers who met the inclusion criteria. Participants were interviewed face-to-face using semi-structured questions and recorded with a digital recording device. The duration of each interview ranged from 60 to 90 minutes. Data were analyzed using content analysis. Four major themes emerged: 1) Understanding of long-term care, 2) The challenges of providing care, 3) Long-term care services as essential support, and 4) Facilitators and barriers to using long-term care services. The findings informed that nursing and multidisciplinary long-term care is needed for stroke survivors in the institutions and at home. The study finding has important implications for the front liners in health sectors, especially for nurses, clinicians, nurse educators, and policymakers to develop specific care units for stroke survivors and train family caregivers to ensure quality long-term care.

ABSTRACTThis cross-sectional study explored factors affecting information about available health services, content of services provided, and involvement in decisions regarding services as perceived by the family caregivers of home-dwelling persons with dementia in Northern Norway. Altogether, 788 family caregivers were invited to participate in a survey, with a response rate of 54.6% (n = 430). The respondents reported modest levels of perceived information and involvement. Few of the expected predictors were associated with the outcomes. Ordinal logistic regression analyses revealed that primary school as the highest level of education and perception of caregiving as moderately or very demanding predicted lower scores on family caregivers’ perceived level of information about available services, information on service content, and involvement in decisions. In addition, medium household income predicted lower scores on information about service content. The results may point to mechanisms that create inequalities in the processing of information and involvement in care decisions regarding care arrangements among different caregiver groups. Health authorities should investigate potential social inequalities in complementary health care for home-dwelling persons with dementia.

Background: Caregiving places an emotional burden on the carer of the person with aphasia as the carer is likely not prepared psychologically, emotionally, or financially for caring for someone post stroke. The carer plays a major role in the recovery process of individuals with aphasia. There is limited research examining the carer’s communicative contributions in an interview situation as it relates to their perceptions of caregiving as well as the relationship to the functional communication skills of the person with aphasia.Aims: The aim of this study was to examine the carer’s perception of caregiving as it relates to their communication style and interaction with the person with aphasia in an interview situation. The functional communication skills of persons with aphasia were also examined in relationship to the carer’s communicative contributions.Methods & Procedures: Nine persons with aphasia and their carers participated in this study. Participants were administered a variety of measures including the Communication Activities of Daily Living-2 (CADL-2) to assess functional communication skills, a Spousal Intake Form to obtain participant history and other pertinent information, a Spousal Rating Scale to evaluate the person with aphasia’s current level of performance in certain areas, and The Carers of Older People in Europe index to explore carer’s perceptions of caregiving. Participants were interviewed and discussed their opinion on 6–8 issues (e.g., healthcare system, divorce, technology, poverty). All interviews were transcribed and coded for specific communication behaviours as outlined in a previous study.Outcomes & Results: The contributions most often used by carers in the interview situations were “speaking for,” revision and correction behaviours. Within this sample, repair of the interviewer’s turn, acknowledging difficulty, rejection, and ambivalent reaction, was not observed. When looking at carers’ perceptions, carers with higher perceived quality of support and used less assistance with word-finding contributions.Conclusions: There is a relationship between the carer’s communication style and perceptions of caregiving and the functional communication skills of persons with aphasia as evidenced by their raw scores on the CADL-2. In general, our results revealed that carers of persons with aphasia are active contributors in an interview situation when the person with aphasia is attempting to communicate. Also, the carer’s perceptions of caregiving impact the way in which they communicate with the person with aphasia.