Perceived Mental Healthcare Barriers and Health-seeking Behavior of African-American Caregivers of Adolescents with Mental Health Disorders

African-American adolescents with mental health disorders are more likely to experience higher rates of depressive moods but are less likely to utilize mental health resources. Mental healthcare providers inform caregivers of adolescents with mental health issues about appropriate resources to facilitate appropriate treatment decisions. Although we understand rates of utilization of services, little understanding exists concerning socio-ecological barriers African-American caregivers experience when seeking mental health care for their adolescents. This study explores African-American caregiver perceptions of barriers to mental health care for adolescents with mental health disorders. We sought to understand how these perceptions influence African-American caregiver mental health-seeking behavior. This qualitative study utilized semi-structured interviews using a grounded theory approach to identify common themes describing experiences of African-American caregivers accessing mental health care for their adolescents. Previous caregiver experiences with mental illness, perceptions of social support, early intervention by educators and extrinsic behavior requiring medication compliance affected caregiver decision-making. Stigma associated with mental illness was a potential barrier to access to mental health care. Financial barriers that prevent access to care and an overall belief that mental health may not be as important as other issues was not identified as affecting health-seeking behaviors for mental health care. Caregivers who struggled with mental health issues themselves recognized these in adolescents and sought mental healthcare services. Caregiver previous experiences with mental healthcare services influenced their decision-making. Healthcare provider ability to engage adolescents, caregivers, and support systems increases the possibilities for positive experiences and continuation of treatment.     

Vulnerability to health problems in female informal caregivers of persons with HIV/AIDS and age-related dementias

The health of informal caregivers is often studied from the perspective of caregivers' and care receivers' personal and interpersonal characteristics. This study offers an alternative explanation based on a vulnerable populations framework and considers the role of resource availability to the health status of informal caregivers (n=76). Caregivers in a convenience sample were females of diverse ethnicity and socioeconomic status, and care recipients were diagnosed with human immunodeficiency virus/acquired immune deficiency syndrome (HIV/AIDS) or age-related dementias (ARD). Personal interviews using structured instruments were conducted with caregivers who were attending outpatient clinics at a public hospital and a VA hospital. Instruments included the Center for Epidemiologic Studies Depression-Scale (CES-D), the Global Health Assessment (GHA), the Activities of Daily Living Scale (ADL), the Memory and Behavior Problems Checklist (MBPC) and items from the Symptom Checklist-90 (SCL-90) measuring anger, anxiety and loneliness. Caregivers were experiencing both physical and mental health problems. Regression analyses were used to examine the relationships among resources available to caregivers, conditions that put caregivers at risk for poorer health, and health status itself. Analyses were conducted for each group of caregivers separately (HIV and ARD) and for the total group, using depressive symptoms and perception of physical health as dependent variables. In caregivers of people with HIV/AIDS (PWHIV), caregiver distress over care recipient symptoms, anxiety and education were related to depressive symptoms. Depressive symptoms, anger and functional status of the PWHIV were related to caregivers' perception of poorer physical health. In caregivers of people with ARD, there were no significant predictors for depressive symptoms or perception of physical health. In the total group of caregivers, lower income and more anger were related to depressive symptom score. When perception of physical health was the dependent variable, minority ethnicity and depressive mood were related to worse perception of physical health. These findings support the relationship of a lack of resources to health status. A community-based programme of resources and health care services for the caregiver-care receiver dyad is recommended.     

Do baby teeth really matter? Changing parental perception and increasing dental care utilization for young children

IntroductionParent/caregivers' inability to recognize the importance of baby teeth has been associated with inadequate self-management of children's oral health (i.e. lower likelihood of preventive dental visits) which may result in dental caries and the need for more expensive caries-related restorative treatment under general anesthesia. Health behavior theories aid researchers in understanding the impact and effectiveness of interventions on changing health behaviors and health outcomes. One example is the Common-Sense Model of Self-Regulation (CSM) which focuses on understanding an individual's illness perception (i.e. illness and treatment representations), and subsequently has been used to develop behavioral interventions to change inaccurate perceptions and describe the processes involved in behavior change.MethodsWe present two examples of randomized clinical trials that are currently testing oral health behavioral interventions to change parental illness perception and increase dental utilization for young children disproportionately impacted by dental caries in elementary schools and pediatric primary care settings. Additionally, we compared empiric data regarding parent/caregiver perception of the chronic nature of dental caries (captured by the illness perception questionnaire revised for dental: IPQ-RD constructs: identity, consequences, control, timeline, illness coherence, emotional representations) between parent/caregivers who did and did not believe baby teeth were important.ResultsCaregivers who believed that baby teeth don't matter had significantly (P < 0.05) less accurate perception in the majority of the IPQ-RD constructs (except timeline construct) compared to caregivers who believed baby teeth do matter.ConclusionThese findings support our CSM-based behavioral interventions to modify caregiver caries perception, and improve dental utilization for young children.     

Participant characteristics before and 4 months after attendance at a family caregiver cancer education program

Recent trends in health care have placed an increased burden on cancer caregivers. In response, nurses and social workers have been taught to implement a 6-hour psychoeducation program for cancer caregivers that addresses symptom management, psychosocial support, and resource identification. Longitudinal data from a convenience sample of 187 cancer caregivers who attended the program are reported. Data were collected before attendance and 4 months later. Findings confirm the chronic and consuming nature of cancer caregiving. Data indicate that perception of burden did not worsen even when caregiving tasks increased in intensity. Caregiver perceptions of their own health actually improved over time. In addition, the number of caregivers who said they were well informed and confident about caregiving after program attendance increased over time. Further study that randomizes caregivers to intervention/control groups is needed to substantiate the role of similar programs in enhancing caregiver skills and minimizing caregiver burden over time.     

The Effects of Exposure to Gang Violence on Adolescent Boys’ Mental Health

Gang violence is a growing public health concern in the United States, and adolescents are influenced by exposure to gang violence. This study explored the influence of exposure to gang violence on adolescent boys’ mental health using a multi-method design. A semi-structured interview guide and the Trauma Symptom Checklist for Children were used to collect data from adolescents. Parents, primary caregivers, and community center employees completed the Child Behavior Checklist or Teacher Report Form. Ten adolescent boys, their parents or primary caregivers, and six community center employees participated in the study. Exposure to gang violence was common among these adolescents and they had a variety of reactions. Parents, primary caregivers, and community center employees had differing perceptions of adolescents’ exposure to violence and their mental health. Adolescent boys’ exposure to gang violence in the community is alarming. These adolescents encountered situations with violence that influenced their mental health.     

Response to the needs of Turkish chemotherapy patients and their families

The purpose of this study was to determine the quality of life, depressive symptoms, and informational needs of cancer patients receiving chemotherapy and of their family caregivers. This article presents findings from a study of 111 patients with cancer and 34 of their primary family caregivers from an outpatient chemotherapy unit in eastern Turkey. The results indicated that the patients perceived a poorer quality of life than their family caregivers. The patients also were more clinically depressed. Furthermore, both the patients and caregivers received little information regarding the illness and the side effects of chemotherapy from their health professionals. Nearly half of the patients and over half of the caregivers reported that information given by health professionals was verbal. Most of the patients and caregivers reported they felt that they needed to be visited by health professionals at their home when they ask for such services and/or once a week. Patients reported the need for assistance with one or more personal, instrumental, or administrative activities. The need for administrative activities of patients and caregivers were found to be similar. In conclusion, nurses must continue to work hard to focus not only on the disease and its symptoms, but also on the impact on the day-to-day living of the patient with cancer and his or her family. Home visits may empower patients and caregivers by giving them information and professional support.     

The effects of exposure to gang violence on adolescent boys' mental health

Gang violence is a growing public health concern in the United States, and adolescents are influenced by exposure to gang violence. This study explored the influence of exposure to gang violence on adolescent boys' mental health using a multi-method design. A semi-structured interview guide and the Trauma Symptom Checklist for Children were used to collect data from adolescents. Parents, primary caregivers, and community center employees completed the Child Behavior Checklist or Teacher Report Form. Ten adolescent boys, their parents or primary caregivers, and six community center employees participated in the study. Exposure to gang violence was common among these adolescents and they had a variety of reactions. Parents, primary caregivers, and community center employees had differing perceptions of adolescents' exposure to violence and their mental health. Adolescent boys' exposure to gang violence in the community is alarming. These adolescents encountered situations with violence that influenced their mental health.     

Korean American Parental Depressive Symptoms and Parental Acceptance–Rejection and Control

This study explored the relationships between Korean American parental depressive symptoms and parenting in 64 mothers and 35 fathers of adolescents 11 to 17 years of age. Using multiple regression after controlling for family income, both parents’ depressive symptoms were found to significantly influence their acceptance and rejection behaviors, explaining 14% of variance in the mother model and 47% of variance in the father model. Specifically, maternal depressive symptoms were found to significantly positively influence their hostility. Paternal depressive symptoms were found to significantly negatively influence their affection and positively influence their hostility, neglect, and undifferentiated rejection. Educating Korean American parents, especially fathers, regarding the possible influence of their depressive symptoms on their acceptance and rejection of their adolescents could be helpful.     

Adolescents previously involved in Satanism experiencing mental health problems

No research has previously been done regarding the phenomenon of adolescents who have previously been involved in Satanism and who experience obstacles in their strive for mental health. Adolescents previously involved in Satanism present behavioral problems like aggressive outbursts, depression, "psychosis" or suicide attempts, that could lead to suicide. In the phenomenon-analysis semi-structured, phenomenological interviews were performed with the respondents and their parents. The respondents were requested to write a na?ve sketch about their life. After completion of the data-control, guidelines for nursing staff were set. The guidelines are set for the management of adolescents who have previously been involved in Satanism and who experience obstacles in their strive for mental health. Interviews with experts in Satanism were conducted, literature in the form of books, magazines and newspaper-clippings were used to verify the research findings. The most important guidelines are that the caregivers have to be reborn Christians; they are not allowed to show any fear or sympathy; they must have sufficient knowledge about Satanism; the adolescents have to be unconditionally accepted; the caregivers have to work in a team and the adolescents have to be taught to deal with their emotions.     

Primary caregivers experience of anti-psychotic medication: A qualitative study

BackgroundManagement of schizophrenia is now shifted to the community setting and family caregivers are the primary caregivers. Managing medications is a complex responsibility of family caregivers caring for patients with mental illness. Medication compliance contributes to improve health outcomes and reduced hospitalization for the care service users; however, little is known about attitudes and perception of family caregivers.Aims and objectivesTo explore family caregivers experience towards antipsychotic medications.MethodsA purposeful sampling of 21 family caregivers was included in the study. Semi-structured interview was employed to collect data from the participants between May and October 2015. Thematic analysis approach was used to identify the common pattern in the data.ResultsFour main themes emerged from the study: insight into illness (poor understanding of illness), treatment factor (thinking about medication, poor guidance for medication compliance), resources and support (availability of medication and cost of medication), health care provider factors (communication gap and poor assessment with follow-up, social dysfunction (social isolation, disruption in life routine) of the primary caregivers.ConclusionsResponsibility for providing care for patients with mental illness are taken place in the community setting and cared by family caregivers. More information resources are required for this role, which requires specific medication management skills and knowledge.     

A qualitative enquiry of caregivers of adolescents with severe disabilities in Guatemala City

PURPOSE: This study explores the experiences of lower middle class Ladino and Indígena parents and caregivers of adolescents with severe physical disabilities as they negotiate Guatemala's urban health care and education systems. METHOD: Interviews with parents and guardians regarding the diagnostic period, current functioning in several domains and resources were analysed using Constructivist Grounded Theory with 15 families in Guatemala City. RESULTS: Juxtaposing economic resources with preparation for adult roles along two dimensions in an axial grid, individual differences were identified. When families experience financial urgency, finding it difficult to meet even basic needs, securing employment immediately is most salient in the transition to adulthood (Low Resources, High Preparation); when families have greater resources, they are less pressed for economic input and, instead, describe a longer-term concern for the educational and professional development of their child (High Resources, High Preparation) or worry about the care of their offspring after their demise (High Resources, Low Preparation). CONCLUSIONS: Practitioners, therapists, parents and policy-makers can be more effectual in providing targeted services by understanding individual differences in the perception of disability, economic resources, and the need for other resources that ensure viable adult roles for young people with disabilities in Guatemala and elsewhere.     

Gaining control: Family members relate to persons with severe mental illness

Decades of empirical research regarding families of persons with serious mental illnesses has documented the stress and burden associated with the caregiving role. Recent changes in health care delivery have increased responsibilities of family caregivers without appreciably alleviating their stress. The complexities of the caregiving role need to be investigated if effective interventions are to be realized. To date, a critical but understudied area of investigation is the meaning of this experience for family caregivers and how that meaning affects their responses to the caregiving role. The purpose of this interpretive study was to increase understanding of the meaning of caregiving that caregivers derived from ongoing interactions with the ill relative. In-depth interviews were conducted with 15 family caregivers of psychiatric inpatients. Thematic analysis of the textual data revealed that the meaning of caregiving was constituted by the following concerns: finding the essence of the person obscured by the illness, finding a place for self in influencing the illness, and helping the relative to move forward. © 1998 John Wiley & Sons, Inc. Res Nurs Health 21: 363–373, 1998     

Predictors of depressive symptoms and physical health in caregivers of individuals with schizophrenia

This cross‐sectional study examined relationships among factors influencing caregiver burden, depressive symptoms, and physical health in family caregivers of individuals with schizophrenia. Two hundred family caregivers of individuals with schizophrenia completed standardized questionnaires related to depressive symptoms, physical health, perceptions of burden, coping, and social support. The results revealed that 19.5% of family caregivers of individuals with schizophrenia experienced significant depressive symptoms and 65.5% perceived themselves in poor physical health. Burden, self‐controlling coping strategies, and physical health status were all independently predictive of depressive symptoms. Two emotion‐focused coping strategies (self‐controlling and escape‐avoidance) were independently predictive of caregiver burden. Only burden predicted physical health status. The findings suggest that health professionals who provide community care for those with schizophrenia need to consider the “unit of care” as the family rather than the individual. The health status of family caregivers should be routinely assessed. Individualized interventions to reduce family burden could include community‐based health professionals as well as trained community volunteers, opportunities for social interaction, and improving self‐care for all family members.     

Prevention and reduction of involuntary treatment at home: A feasibility study of the PRITAH intervention

Sometimes care is provided to a cognitively impaired person against the person's will, referred to as involuntary treatment. We developed the PRITAH intervention, aimed at prevention and reduction of involuntary treatment at home. PRITAH consists of a policy discouraging involuntary treatment, workshops, coaching by a specialized nurse and alternative interventions. A feasibility study was conducted including 30 professional caregivers. Feasibility was assessed by attendance lists (reach), a logbook (dose delivered and fidelity), evaluation questionnaires and focus group interviews (dose received, satisfaction & barriers). The workshops and coach were positively evaluated and the average attendance rate was 73%. Participants gained more awareness and knowledge and received practical tips and advice to prevent involuntary treatment. Implementation of the intervention was feasible with minor deviations from protocol. Recommendations for improvement included more emphasis on involvement of family caregivers and general practitioners and development of an extensive guideline to comply with the policy.     

Family caregiver knowledge of treatment intent in a longitudinal study of patients with advanced cancer

Goals of work Caregivers have become part of a triad of care and frequently attend patient consultations in the ambulatory cancer setting. Effective caregiving and decision making require that they understand the course of the disease and the changing treatment goals. This study sought to evaluate caregiver perception of treatment intent.Patients and methods A cohort of 317 subjects (181 patients and 136 caregivers) from The Canberra Hospital's Cancer Services were followed for 6 months. Caregiver understanding of patient treatment intent was measured over time together with sources of information.Main results Most caregivers understood that the illness was life-threatening (92% at week 12) and that treatment goals were to control illness and improve quality of life. Only half understood that treatment was noncurative (48% at week 12); 27% were unsure and 25% believed that treatment would cure. A high proportion of caregivers identified the specialist as the source of information (77%) and almost half also included the general practitioner (47%). These figures remained fairly constant over time. There were significant gender and age differences in understanding. At baseline, more women than men had an accurate perception of treatment intent and these numbers increased over time. Men's perception did not change.Conclusions Caregivers' ability to fully engage in the task of caring for those with a terminal illness may be hampered by their lack of understanding of the treatment patients receive.     

A qualitative enquiry of caregivers of adolescents with severe disabilities in Guatemala City

Purpose:?This study explores the experiences of lower middle class Ladino and Indígena parents and caregivers of adolescents with severe physical disabilities as they negotiate Guatemala's urban health care and education systems.

Method:?Interviews with parents and guardians regarding the diagnostic period, current functioning in several domains and resources were analysed using Constructivist Grounded Theory with 15 families in Guatemala City.

Results:?Juxtaposing economic resources with preparation for adult roles along two dimensions in an axial grid, individual differences were identified. When families experience financial urgency, finding it difficult to meet even basic needs, securing employment immediately is most salient in the transition to adulthood (Low Resources, High Preparation); when families have greater resources, they are less pressed for economic input and, instead, describe a longer-term concern for the educational and professional development of their child (High Resources, High Preparation) or worry about the care of their offspring after their demise (High Resources, Low Preparation).

Conclusions:?Practitioners, therapists, parents and policy-makers can be more effectual in providing targeted services by understanding individual differences in the perception of disability, economic resources, and the need for other resources that ensure viable adult roles for young people with disabilities in Guatemala and elsewhere.     

Factors associated with depressive distress among Taiwanese family caregivers of cancer patients at the end of life

Family caregivers in East Asian countries are known to have a strong sense of filial piety and a traditional caregiving ideology. They are generally presumed to be protected from psychological distress arising from caregiving. However, there is scant information regarding the impact of caregiving on Chinese/Taiwanese families. The purpose of this study was aimed at identifying those family caregivers of Taiwanese terminally ill cancer patients who are at risk of experiencing depressive distress from the following three categories of predisposing factors: 1) contextual factors; 2) stressors; and 3) appraisal of the caregiving situation.Of the 170 Taiwanese family caregivers of terminally ill cancer patients that participated in this survey, 129 (75.9%) were at an extraordinarily high risk of being distressed because of depressive symptoms (CES-D > 15). Results indicated that family caregivers were vulnerable to clinically depressive distress if they were the patient's spouse (adjusted odds ratio (AOR): 2.89; 95% confidence interval (CI): 1.19-7.01), or evaluated caregiving as imposing a greater negative impact on their own health (AOR: 1.27; 95% CI: 1.09-1.47). In contrast, if family caregivers felt very confident in their knowledge of how to take care of the patient at home (AOR: 0.35; 95% CI: 0.15-0.81), or were sufficiently aware of the patient's thoughts and feelings about disease experiences and symptoms (AOR: 0.47; 95% CI: 0.25-0.88), they were less likely to suffer from depressive distress.These finding have significant clinical implications when they are put into the context of Confucian cultures which place great emphasis on filial piety and familism. Interventions and policy should be developed to target spousal caregivers to enhance their confidence in caregiving and understanding of the patient's disease experiences. This will reduce the negative caregiving impact on the caregiver's health, which in turn may prevent the development of depressive distress among family caregivers.     

Childhood brain tumors: parental concerns and stressors by phase of illness.

The objective of this study is to identify common problems and helpful resources important to parents of children with brain tumors by illness phase and to determine associations with stress. Parents with a child diagnosed within the past 10 years were surveyed regarding healthcare provider interactions, medical information/education, health care utilization and psychosocial concerns. Survey items were rated as problems or helpful, and for importance at each phase of illness. Stress was recorded from 0 to 10 for each phase; associations with demographic characteristics and items were tested statistically. A total of 139 parents from 87 families responded, with 45 mother-father pairs. Half reported unmet informational needs as most important during diagnosis (etiology), recurrence (complementary therapy), end of life (dying process), and remission (long-term effects). Mothers experienced greater stress than fathers during adjuvant treatment (p = .009). Stress increased (p < .05) during diagnosis and hospitalization/surgery with being married, at hospital discharge because of changes in child's personality/moods, during adjuvant treatment with unmet informational needs regarding stopping treatment, during recurrence regarding employment concerns, and during remission with unmet informational needs regarding life-time expectations. Stressors changed across phases of illness. Married respondents appeared at increased risk for stress. Further work is needed to tailor and evaluate interventions to decrease stress during illness phases.