The Farage Quality of Life Measure for Consumer Products: Development and Initial Implementation

Despite the existence of numerous health-related quality of life (HRQoL) measures, few if any are geared to evaluating the impact of consumer products. We describe the development and initial implementation of the Farage Quality of Life (FQoL™) general questionnaire, a self-administered questionnaire to assess the potential impact of a variety of consumer products on overall well-being and HRQoL. We developed the 27-item FQoL™ measure, scored on a Likert scale and covering Overall Quality of Life (1 item), Well-Being (12 items), and Energy and Vitality (14 items), and a 3-item Menstrual Module for use with menstruating women. We assessed test-retest reliability by administering the items twice to a sample of 20 women 3 days apart, calculating mean absolute differences in responses. Then, in a study of 119 women ages 18–55 years who were randomly assigned to use a new brand of menstrual pad vs. their usual menstrual pads for 1 menstrual period, we administered the FQoL™ questionnaire 5–7 days before their menstrual period and 5–7 days after the start of their period. We compared changes in responses within groups and between groups pre- vs. during menstruation. Overall, test-retest reliability was good, with a mean (SD) absolute difference for the 27 general items of 0.51 (0.31). In the menstrual pad study, the mean (SD) age of responders was 35.3 (7.9) years; 59 (50%) were age 18–35 and 60 (50%) were age 36–55. Relative to the intervention group, the usual pads group reported worse HRQoL during vs. pre-menstruation on items addressing self-confidence, managing stress, energy, and fatigue (P ≤ 0.05 for each comparison). In subgroup analyses, relative to intervention patients, women age 18-35 in the usual pads group reported greater changes for the worse during vs. pre-menstruation in managing stress; energy; and fatigue, but relatively better work or school attendance during vs. pre-menstruation, and women age 36–55 in the usual pads group reported greater changes for the worse in self-confidence and in desire to go out in public (P ≤ 0.03 for each comparison). The general FQoL™ is a new measure of HRQoL applicable to consumer product evaluation. It has good test-retest reliability. The FQoL™ menstrual module detects changes in HRQoL during vs. before the menstrual period associated with menstrual pad use. Further research is needed to assess the construct validity of the HRQoL.     

Balancing Elder Care Responsibilities and Work: The Impact on Emotional Health

The current study investigated the effects of balancing elder care and work on emotional health. Responses from 43 retired caregivers, 211 not retired caregivers, 49 retired non-caregivers, and 224 not retired non-caregivers, who had participated in the national Health and Retirement Study, served as the data base. Results indicate that Caregiver Status (Caregiver vs. Non-caregiver) and Retirement Status (Retired vs. Not Retired) interact, depending on the measure of emotional health. The relationship between the number of depression symptoms reported and Caregiver Status depended on whether the respondent was also retired or employed; a significant interaction was not found when emotional health was measured with one overall item. A significant difference was not found between employed caregivers and employed non-caregivers, in terms of emotional health. Employed caregivers who gave more caregiving hours did report poorer emotional health than employed caregivers who gave fewer hours. Female caregivers reported more depression symptoms than male caregivers. The results suggest that employers may need to develop interventions which may help caregivers who are highly involved with caregiving responsibilities.     

The Impact of Demographic Characteristics on Health-related Quality of Life Profile of Malaysian Epilepsy Population

The possibilities of adverse drug reactions and disease-related psychosocial implications have led to the current emphasis on health-related quality of life (HRQoL) assessment in epilepsy. The main objective of this study was to determine the impact of various demographic characteristics i.e. gender, age, marital status, ethnic origin, religion, and employment status on HRQoL profiles in Malaysian epilepsy patients. Patients with epilepsy were recruited from ten public hospitals in Sabah, Malaysia. Upon written consents, they completed the Malay Quality of Life In Epilepsy-30 (QOLIE-30) instrument which assesses Seizure Worry, Overall QoL, Emotional Well-Being, Energy/Fatigue, Cognitive Functioning, Medication Effects and Social Functioning. An Overall Score was generated to represent a summarised HRQoL score. Univariate and multiple linear regression analyses were both carried out using SPSS 14 for (1) all patients and (2) patients possessing Poor QoL (Overall Score < median) and Good QoL (Overall Score ≥ median). One-hundred-and-thirteen patients participated in the study. The respondents ranged from 18–76 years with a mean age of 31 years. Majority were Kadazandusuns (n = 46; 40.7%) and many were unmarried (n = 68; 60.2%), Muslims (n = 50; 44.2%) and unemployed (n = 54; 47.8%). Age was the most significant factor across all patients (B = −0.372, t = −2.238, p = 0.027), regardless of Poor or Good QoL level. Older patients (>56 years) fared the worst in many HRQoL areas. Those with Poor QoL were mostly affected by marital status (widowed/divorced) and ethnic origin (Kadazandusun/Chinese). Religion (Buddhism/Hinduism) emerged as the most prominent HRQoL predictor for patients experiencing Good QoL and being Chinese too played a role. These outcomes indicate that specific demographic characteristics are influential in determining the HRQoL of epilepsy patients. Consequently, healthcare professionals could utilise such information in planning the best treatment and care by considering both the medical and psychosocial impacts towards patients. This paper was part of a research project and majority of its components had been presented at the 7th Conference On International Society For Quality Of Life Studies (ISQoLS) 2006, Rhodes University, Grahamstown, South Africa, 17–20 July 2006.     

The Starting Early Starting Smart Integrated Services Model: Improving Access to Behavioral Health Services in the Pediatric Health Care Setting for At-Risk Families with Young Children

We evaluated the Starting Early Starting Smart (SESS) national initiative to integrate behavioral health services (parenting, mental health, and drug treatment) into the pediatric health care setting for families with young children. Data are presented from five pediatric care (PC) sites, drawing from families at risk due to demographic and behavioral health factors, with infants less than 12 months of age (n = 612). Families were randomly assigned to either the SESS program or a standard care Comparison group. We utilized longitudinal analyses to estimate differences in utilization rates for parenting, mental health, and drug treatment over 6 follow-up time points (3, 6, 9, 12, 15 and 18 months). Our findings indicate that SESS caregiver participants were 4.6 times (p < 0.001; CI = 3.33–6.26) more likely to receive parenting services, 2.1 times (p < 0.001; CI = 1.48–2.86) more likely to receive outpatient mental health treatment, and 1.8 times (p = 0.025; CI = 1.08–3.14) more likely to receive drug treatment than Comparison group participants. Our results demonstrate the success of the SESS program in coordinating and improving access to behavioral health services for high-risk caregivers within the pediatric health care setting and highlight the importance of continuing to focus public health policy on the behavioral health care needs of families with young children.     

Quality of Life Before and After Cataract Surgery: Research in a Sample of Polish Patients

The goal of this paper is to present possible change in quality of life (QoL) in older sample of people with vision disturbances. The patients were investigated twice: before (N = 193) and 4 month after the cataract surgery (N = 69), by means of the scale for vision functioning, and the Life Quality Questionnaire (Schalock & Keith, 1993) extend with the items measuring health related quality of life (HRQoL). Two problems were formulated: To what extent are visual defects associated with the decreased subjective QoL? What changes are observed in perceived QoL during the period of treatment of visual defects? The patients reported significant increase of HRQoL, however they did not report similar increase of a general QoL. Few reasons are considered: overlapping of the content of visual function scales and HRQoL and different indices of a general QoL and HRQoL, lack of a proper postoperative care, low socio-economic status of the participants, and too high expectation concerning better functioning after the surgery.     

Effects of foster care intervention and caregiving quality on the bidirectional development of executive functions and social skills following institutional rearing

Institutional rearing negatively impacts the development of children's social skills and executive functions (EF). However, little is known about whether childhood social skills mediate the effects of the foster care intervention (FCG) and foster caregiving quality following early institutional rearing on EF and social skills in adolescence. We examined (a) whether children's social skills at 8 years mediate the impact of the FCG on the development of EF at ages 12 and 16 years, and (b) whether social skills and EF at ages 8 and 12 mediate the relation between caregiving quality in foster care at 42 months and subsequent social skills and EF at age 16. Participants included abandoned children from Romanian institutions, who were randomly assigned to a FCG (n = 68) or care as usual (n = 68), and a never-institutionalized group (n = 135). At ages 8, 12, and 16, social skills were assessed via caregiver and teacher reports and EF were assessed via the Cambridge Neuropsychological Test Automated Battery. Caregiving quality of foster caregivers was observed at 42 months. FCG predicted better social skills at 8 years, which in turn predicted better EF in adolescence. Higher caregiver quality in foster care at 42 months predicted better social skills at 8 and 12 years, and better EF at 12 years, which in turn predicted 16-year EF and social skills. These findings suggest that interventions targeting caregiving quality within foster care home environments may have long-lasting positive effects on children's social skills and EF.     

Environmental stress, psychological stress and allostatic load

The mechanism by which chronic caregiving stress results in poor health is not well understood. The objective was to determine whether such a mechanism may be allostatic load, a novel concept specifying physiological systems that may suffer cumulative wear and tear following chronic stress, leading collectively to poor health. The study examines the association of allostatic load with environmental and psychological stress in the contexts of dementia caregiving and relinquishment of care, and is a 2-year longitudinal comparison of three groups: 80 new dementia spouse caregivers, 120 veteran caregivers, and 60 non-caregivers. Data comprised allostatic load markers and environmental and psychological stress measures. Cross-lagged analyses produced a statistically significant association between psychological stress and one allostatic load component (primary mediators). Psychological stress was a better predictor of primary mediators than environmental stress. Primary mediators rose with time for caregivers, but not for non-caregivers. A greater rise was evident for caregivers who had relinquished their role by the second year, although the level of psychological stress actually declined. Primary mediators are a key component of the relationship between allostatic load and prior stress. When allostatic load is treated as an outcome of stress, it is important to distinguish environmental and psychological stress.     

Expanding Roles: A Survey of Public Health Genetic Counselors

According to the 2008 National Society of Genetic Counselors (NSGC) Professional Status Survey (PSS), 31 genetic counselor respondents reported spending at least 50% of their time in the area of public health. The NSGC Public Health Special Interest Group (PHSIG) had 49 dues-paying members in 2009. The purpose of this study was to identify the work settings and public health activities in which genetic counselors participate. A novel online survey was disseminated over the NSGC PHSIG Listserv. Forty-one percent (n = 13) of public health genetic counselor respondents worked in a university medical system, while 53% (n = 17) were grant-funded and held a non-clinical appointment. The most common public health activities included educating healthcare professionals (82%) and community members (61%), research (55%), grant writing (55%) and grant administration (36%). Most respondents (82%) reported learning certain public health skills outside of their genetic counseling training programs. Differences in work settings were found, with a significantly greater percentage of public health genetic counselors working in government agencies. Genetic counselors have opportunities to become involved in public health activities as the scope of public health genetics grows. Furthermore, genetic counseling competencies are compatible with the Institute of Medicine’s “10 Essential Public Health Services.” The NSGC and genetic counseling training programs are encouraged to offer more public health learning opportunities for genetic counselors and genetic counseling students interested in this specialty area.     

A randomized clinical trial of Behavioral Activation (BA) therapy for improving psychological and physical health in dementia caregivers: Results of the Pleasant Events Program (PEP)

Dementia caregiving is associated with elevations in depressive symptoms and increased risk for cardiovascular diseases (CVD). This study evaluated the efficacy of the Pleasant Events Program (PEP), a 6-week Behavioral Activation intervention designed to reduce CVD risk and depressive symptoms in caregivers. One hundred dementia family caregivers were randomized to either the 6-week PEP intervention (N = 49) or a time-equivalent Information-Support (IS) control condition (N = 51). Assessments were completed pre- and post-intervention and at 1-year follow-up. Biological assessments included CVD risk markers Interleukin-6 (IL-6) and D-dimer. Psychosocial outcomes included depressive symptoms, positive affect, and negative affect. Participants receiving the PEP intervention had significantly greater reductions in IL-6 (p = .040), depressive symptoms (p = .039), and negative affect (p = .021) from pre- to post-treatment. For IL-6, clinically significant improvement was observed in 20.0% of PEP participants and 6.5% of IS participants. For depressive symptoms, clinically significant improvement was found for 32.7% of PEP vs 11.8% of IS participants. Group differences in change from baseline to 1-year follow-up were non-significant for all outcomes. The PEP program decreased depression and improved a measure of physiological health in older dementia caregivers. Future research should examine the efficacy of PEP for improving other CVD biomarkers and seek to sustain the intervention's effects.     

Differences in cognitive performance between informal caregivers and non-caregivers

ABSTRACT

Extensive literature exists documenting the relationship between stress and cognition. Caregiving for an individual with Alzheimer’s disease can be aunique and chronic stress experience due to the increasing dependency of the care-recipient as the disease progresses. The current study examines the relationship between stress and cognitive performance in 47 dementia caregivers compared to 47 noncaregiver control participants matched on age, gender, and education. Participants completed measures assessing stress (measured via the Perceived Stress Scale) and seven domains of cognition including episodic memory, working memory, executive functioning, attention, visuospatial processing, processing speed, and implicit memory. Results showed that caregivers had poorer performance than non-caregivers on certain measures of episodic memory, working memory, and executive functioning; while no significant differences were observed on measures of attention, visuospatial processing, processing speed, or implicit memory. In addition, when controlling for general stress, caregiver performance on measures of processing speed and visuospatial processing was also poorer than non-caregivers. By controlling for levels of general stress that may not be related to caregiving, these results show that differences in cognitive performance are unlikely to be explained by general stress alone.     

Psychosocial Well-being of Children in HIV/AIDS-Affected Families in Southwest China: A Qualitative Study

We investigated the psychosocial well-being of children in HIV/AIDS-affected families in rural China from the child’s and caregiver’s perspectives. Semi-structured interviews were conducted among children living in HIV/AIDS-affected families (n = 16), their caregivers (n = 16) and key community informants (n = 5). Our findings showed that all of the children relied heavily on caregivers and peers to gain psychological support. Children’s psychosocial problems included fear, anxiety, grief, and loss of self-esteem and confidence. Stigma towards children existed, including isolation, ignorance and rejection. Our study illustrates that HIV/AIDS has impacted negatively on the psychosocial well-being of children. These findings can be used as preliminary data supporting more researches to profoundly explore the psychosocial impact of HIV/AIDS on children and appropriately indicate the need for interventions.     

Parental Efficacy Moderates the Association Between Empathy and Burden Among Parents of Children Admitted to a Psychiatric Ward

Empathy is considered a positive aspect of caregiving, although in certain circumstances, being empathic might increase the burden of caregivers. The current study assessed the associations between empathy, parental efficacy, and family burden among parents of children who were hospitalized in a psychiatric unit. Specifically, we examined whether the association between empathy and family burden was moderated by the parents’ sense of self-efficacy. Seventy parents of children with psychiatric disorders, hospitalized in an inpatient psychiatric unit, filled out questionnaires of empathy, parental efficacy, and family burden. Results supported a moderating role of parental efficacy between empathy and family burden (interaction effect: β = −1.72, p = .0406). Specifically, empathy was positively related to family burden among parents with low self-efficacy (conditional effect = 0.70, p = .032) and negatively related to family burden among parents with high self-efficacy (conditional effect = −0.39, p = N.S). Implications for practice include the importance of self-efficacy and address the possible negative implications of empathy among parents of children treated in a psychiatric hospital.     

Aerobic Exercise Enhances Cognitive Flexibility

Introduction Physical activity is believed to prevent cognitive decline and may enhance frontal lobe activity. Methods Subjects were 91 healthy adults enrolled in a wellness center. Over a 10 week intervention, controls were aerobically active 0–2 days per week. Half the intervention group was active 3–4 days/week and half 5–7 days/week. Outcome measures included memory, mental speed, reaction time, attention, and cognitive flexibility. Results Neurocognitive data were analyzed by repeated measures comparing minimal aerobic exercise (the control group) to moderate aerobic exercise (3–4 days/week), and to high aerobic exercise (5–7 days/week). Initial analyses noted significant improvements in mental speed (p = .03), attention (p = .047), and cognitive flexibility (p = .002). After controlling for age, gender, education, and changes in psychomotor speed, only cognitive flexibility still showed significant improvements (p = .02). Conclusion Over a 10 week period, increasing frequency of aerobic activity was shown to be associated with enhanced cognitive performance, in particular cognitive flexibility, a measure of executive function.     

Assessing Psychosocial Impairment in the Pediatric Emergency Department: Child/Caregiver Concordance

The objective of this study was to examine the level of agreement between child- and caregiver-reports of the child’s psychosocial problems presenting to a Pediatric Emergency Department (PED) using a validated screening tool. This was an anonymous, prospective, cross-sectional, multi-informant (child and caregiver) study assessing cognitive, emotional, and behavioral problems and physical complaints in children and adolescents presenting to a PED. Three-hundred and fifty-eight children and adolescents (8–18 years old) and their caregivers participated. Children completed the Youth-Pediatric Symptom Checklist (PSC-Y), while their caregivers completed the Pediatric Symptom Checklist–35 (PSC-35) to measure psychosocial impairment. The child’s physical complaints (e.g., chief complaint, chronicity, other medical problems, medications) and demographic information were assessed using an investigator-developed patient background questionnaire completed by the caregivers. Physical complaints (e.g., chief complaint, chronicity, other medical problems, medications) were assessed using an investigator-developed patient background questionnaire. Agreement between child- and caregiver- reports was analyzed using Cohen’s kappa coefficient. Differences between child and caregiver-reported scores were determined by t-tests. Poor to moderate agreement was found between child- and caregiver-reports of attention problems (κ = .355), externalizing problems (κ = .340), internalizing problems (κ = .065), and total PSC score (κ = .410). Both children and caregivers should complete the psychosocial screener to maximize the accuracy of assessment and the identification of impairment.     

Is level of prematurity a risk/plasticity factor at three years of age?

Children born preterm have poorer outcomes than children born full-term, but the caregiving environment can ameliorate some of these differences. Recent research has proposed that preterm birth may be a plasticity factor, leading to better outcomes for preterm than full-term infants in higher quality environments. This analysis uses data from two waves of an Irish study of children (at 9 months and 3 years of age, n = 11,134 children) and their caregivers (n = 11,132 mothers, n = 9998 fathers) to investigate differences in how caregiving affects social, cognitive, and motor skills between full-term, late preterm, and very preterm children. Results indicate that parental emotional distress and quality of attachment are important for child outcomes. Both being born very preterm and late preterm continue to be risk factors for poorer outcomes at 3 years of age. Only fathers’ emotional distress significantly moderated the effect of prematurity on infants’ cognitive and social outcomes—no other interactions between prematurity and environment were significant. These interactions were somewhat in line with diathesis stress, but the effect sizes were too small to provide strong support for this model. There is no evidence that preterm birth is a plasticity factor.     

Informal Caregiving to Persons with AIDS in the United States: Caregiver Burden Among Central Cities Residents Eighteen to Forty-Nine Years Old

Characteristics and caregiving experiences of friends and family members caring for people with AIDS (PWAs) were examined. Based on a probability sample of informal AIDS caregivers ages 18–49 living in central cities of the United States (n = 260), analyses were conducted to (a) identify the sociodemographic characteristics of young central city caregivers; and (b) examine the effects of caregiver characteristics (relationship to PWA, gender, race/ethnicity, income, sexual orientation, HIV status, perceived susceptibility), and level of objective caregiving demands, on subjective caregiver burden. Results indicate that the largest group of caregivers in this age category are male friends of the PWA—a group not typically found among caregivers to persons with other types of illnesses. In general, gay or bisexual caregivers, caregivers who have traditional family ties to the PWA, men relative to women, and lower income caregivers, report the greatest burden. While level of caregiving demands represents the most influential predictor of caregiver burden, white and male caregivers experience greater burden, independent of level of involvement and other caregiver characteristics. Receiving instrumental support with caregiving buffers the impact of high objective demands on subjective burden.     

Habituation and novelty detection fNIRS brain responses in 5‐ and 8‐month‐old infants: The Gambia and UK

The first 1,000 days of life are a critical window of vulnerability to exposure to socioeconomic and health challenges (i.e. poverty/undernutrition). The Brain Imaging for Global Health (BRIGHT) project has been established to deliver longitudinal measures of brain development from 0 to 24 months in UK and Gambian infants and to assess the impact of early adversity. Here results from the Habituation‐Novelty Detection (HaND) functional near‐infrared spectroscopy (fNIRS) task at 5 and 8 months are presented (N = 62 UK; N = 115 Gambia). In the UK cohort distinct patterns of habituation and recovery of response to novelty are seen, becoming more robust from 5 to 8 months of age. In The Gambia, an attenuated habituation response is evident: a larger number of trials are required before the response sufficiently suppresses relative to the response during the first presented trials. Furthermore, recovery of response to novelty is not evident at 5 or 8 months of age. As this longitudinal study continues in The Gambia, the parallel collection of socioeconomic, caregiving, health and nutrition data will allow us to stratify how individual trajectories of habituation and recovery of response to novelty associate with different risk factors and adaptive mechanisms in greater depth. Given the increasing interest in the use of neuroimaging methods within global neurocognitive developmental studies, this study provides a novel cross‐culturally appropriate paradigm for the study of brain responses associated with attention and learning mechanisms across early development.     

Relationship between Mental Health and Burden among Primary Caregivers of Outpatients with Schizophrenia

There is growing recognition that caring for a patient with schizophrenia often results in high levels of perceived burden and poorer overall mental health for caregivers. A quantitative cross‐sectional design and standardized instruments were used to collect data from 355 primary caregivers of adults in outpatient care with schizophrenia in China. Structural equation modeling was used to examine the association between caregiver burden and mental health among primary caregivers and whether this association is influenced by personality, coping style, and family functioning, based on a diathesis–stress perspective. Goodness‐of‐fit indices (χ²/df = 1.406, GFI = 0.919, CFI = 0.957, etc.) confirmed that the modified model fit the data well. In line with the diathesis–stress model, and with this study's hypotheses, we found that caregiver burden was significantly related to mental health outcomes directly. The final model showed that personality traits, coping style, and family function influenced the relationship between caregiver burden and mental health. The neuroticism personality traits have a direct effect on caregiver burden and family functioning in this sample. Coping style had a direct effect on the caregiver burden, and family functioning had a direct effect on the caregiver burden. Our final model about primary caregivers can be applied clinically to predict mental health outcomes from caregiver burden.     

Validation of the AMBIANCE-brief: An observational screening instrument for disrupted caregiving

Resulting from a community-identified need for a well-validated indicator of caregiving difficulties for use in practice settings, a brief form of the Atypical Maternal Behavior Instrument for Assessment and Classification System (AMBIANCE) was developed for use as a screening instrument. Prior to its dissemination, this study aimed to assess the feasibility, reliability, and validity of the AMBIANCE-Brief. Adolescent mother–infant dyads (N = 69) participated in the Strange Situation Procedure, as well as play sessions with and without toys. Maternal disrupted caregiving was coded from the play sessions using the AMBIANCE and AMBIANCE-Brief. The AMBIANCE-Brief demonstrated convergent validity with the AMBIANCE in the play session with toys (r = .65, p < .001) and without toys (r = .61, p < .001). Concurrent validity of the AMBIANCE-Brief was also demonstrated in relation to infant attachment disorganization in the play session with toys (r = .36, p < .05) and without toys (r = .32, p < .01). These findings suggest a shorter protocol for assessing disrupted caregiving may be feasible and valid for use in community settings. Future studies are in progress to train community practitioners in the use of the AMBIANCE-Brief and to evaluate their reliability.