Coping with Genetic Risk: Living with Huntington Disease (HD)

Rapid developments in genetics suggest that more and more people will be identified ‘at risk’ for common illnesses. Genetic discoveries have the potential to improve disease outcomes, but they also highlight gaps in our knowledge about patient-level factors such as how individuals respond to a genetic threat to their health and how they cope with that threat. There have been few empirical applications of psychological theories to understand genetic testing decisions and outcomes, although there have been calls for this approach. Drawing upon interviews with individuals at risk for (or with) Huntington disease (HD), this study adopts a stress and coping framework to explore how people cope with genetic illness in the family. Qualitative data analyses revealed that coping strategies were dynamic and varied but could be classified as 1) primary control coping, 2) secondary control coping and 3) social comparison strategies. Important distinctions were observed in coping strategies among those who had undergone genetic testing and received a test result, those who remained at risk, and those affected with HD, along with their caregivers. Implications for clinical practice and genetics health services are discussed.     

Adolescent Perceptions of Parental Behaviors,Adolescent Self-Esteem,and Adolescent Depressed Mood

Using symbolic interaction, we developed a research model that proposed adolescent perceptions of parental support and psychological control would be related to adolescent depressed mood directly and indirectly through self-esteem. We tested the model using self-report questionnaire data from 161 adolescents living with both of their biological parents. To examine possible gender of adolescent differences, we tested two multigroup models separately for adolescents’ perceptions of mothers’ and fathers’ parental behaviors. Both the fathers’ and mothers’ models yielded (a) direct paths from self-esteem to depressed mood (for boys and girls), psychological control to depressed mood (for boys) and (b) an indirect path from support to self-esteem to depressed mood (for girls and boys) and an indirect path from psychological control to self-esteem to depressed mood (for girls). In addition, in the fathers’ model a significant direct path was found between fathers’ support and depressed mood (for girls).     

Parents of Adolescents with Mental Disorders: Improving Their Caregiving Experience

Several studies have demonstrated that the family members of adolescents with mental diseases experience distress, anxiety and depression, as well as economic strain, all of which contribute to physical and psychological caregiver morbidity. The aim of this study was to assess the effectiveness of intervention to improve the caregiving experience of the parents of mentally ill adolescents. The parents of 20 patients were assessed with the Experience of Caregiving Inventory (ECI) and the Working Alliance Inventory (WAI), while patients’ functioning and psychopathology were evaluated with the Global Assessment of Functioning (GAF) scale and the Child Behavior Check List (CBCL), respectively. Assessments were conducted over 9 months, comparing the experimental group receiving the intervention with a control group that received “standard” care. While there were no significant differences in the patients’ psychopathologies, the caregivers in the experimental group had better ECI and WAI scores. Intervention focusing on the parents seemed to improve the caregivers’ understanding of the disease’s impact on their lives irrespective of the severity of their children’s condition. This finding may be useful in developing adequate measures for the parents of adolescents with severe mental diseases to help contain their psychological distress.     

Anxiety and Depression in Patients with Amyotrophic Lateral Sclerosis and Their Caregivers

A large number of studies have investigated a variety of psychological aspects in people with Amyotrophic Lateral Sclerosis, but there is still considerable uncertainty concerning the actual morbidity, in particular for anxiety. We aim to evaluate depression levels and anxiety disposition in ALS patients and their caregivers, in comparison to healthy controls. We conducted a cross-sectional comparison between people with ALS, their caregivers and a non-clinical control group in order to evaluate anxiety and depression levels. 40 ALS patients, their caregivers and 40 healthy adult subjects completed the Beck Depression Inventory II (BDI-II) and the State-Trait Anxiety Inventory—Y2 scale (STAI). We compared overall and single item scores in order to find differences between the three groups. BDI-II scores were significantly different between groups. Depression scores were higher for patients than for healthy controls, in both somatic and psychological sub-scales. Caregivers presented higher levels of psychological depression in comparison with healthy controls, and lower scores of somatic depression in comparison to patients. No differences were found in trait anxiety levels comparing the three groups. ALS patients and their caregivers developed more depression related symptomatology than the non-clinical sample. However, susceptibility to anxiety for both patients and caregivers seemed to be at a normal level.     

The Association Between Post-traumatic Stress and Health-Related Quality of Life in Adults Treated for a Benign Meningioma

The aim of this study was to examine the relationship between health-related quality of life and brain-tumor related posttraumatic stress symptoms (PTSS) in adults who had been treated for a primary benign meningioma (MGM). Utilizing a cross-sectional survey design, 70 adults who had previously been treated with radiotherapy [M = 4.4 years] for a benign MGM were administered questionnaires assessing MGM-related PTSS, health-related quality-of-life (QOL), and current mood, as well as a test of executive functioning. Sixteen percent of the sample reported heightened MGM-related PTSS. Elevated PTSS was significantly associated with a substantial reduction in executive functioning, QOL, as well as heightened symptoms of depression, fatigue and confusion. The majority of participants with elevated PTSS reported the need to have professional support due to feeling distressed and having a fear of their tumor progressing or recurring. The findings suggest that one in six patients treated for a benign MGM are at risk of experiencing MGM-related PTSS both in the short- and longer-term, and PTSS may seriously hamper patients QOL irrespective of prognosis. The findings suggest that psychological effects need to be taken into account when treating MGM patients.     

Cultural Influences in the Aetiological Beliefs of Saudi Arabian Primary Care Patients About Their Symptoms: The Association of Religious and Psychological Beliefs

Objective To develop a self-report questionnaire to measure the beliefs of Arabic primary care patients about the causes of their physical symptoms; to use this to quantify the beliefs of patients consulting their general practitioners (GPs) in Saudi Arabia; and to test whether patients with psychological problems differ from others in their beliefs, particularly religious and supernatural beliefs. Methods Consecutive patients (N = 224) completed a specially developed aetiological beliefs’ questionnaire. Patients were divided into two groups (cases and non-cases of emotional disorder) according to the GHQ-12. Results Religious and supernatural aspects of culture colour patients’ symptom beliefs: that their symptoms were a test or punishment from Allah’ was the most common belief. Even in non-cases, around half the patients also endorsed nerves and stress as a cause of their physical symptoms. Cases were more likely than non-cases to endorse items related to both religious and psychological factors. Conclusion There is no support for the view that Saudi Arabian patients explain symptoms supernaturally as a way of denying psychological factors. GPs and health professionals in Saudi primary care need to understand what patients believe to be the cause of their problems and to appreciate that religious and psychological beliefs are both very common. GPs should address psychological beliefs and concerns even with those patients who present physical symptoms.     

Caregivers’ Level of Trust in Their Children's Health Care Providers

Trust in healthcare providers is associated with clinical outcomes among adult patients. Children with disabilities have complex health needs that place stress on caregivers. Consequently, they are increasingly likely to rely on their children's health care providers to ensure children's health care needs are met. However, no studies have explored factors affecting caregivers’ trust in their children's providers. We assessed caregivers’ trust in their children's providers and identified predictive factors of trust. The results indicate that children's disability condition, functional status, age, the providers’ specialty, and the type of health care plan are significant predicators of caregiver's trust. Specifically, caregivers of children with emotional/behavioral disabilities and children with poor physical or emotional/behavioral functioning reported less trust in their children's providers compared to caregivers of children without physical disabilities or no disability and those having higher levels of physical or emotional/behavioral functioning. In addition, caregivers of younger children had more trust compared to caregivers of older children. Caregivers of children enrolled in a managed care plan for physical health care reported less trust compared to caregivers of children in other organizational arrangements. Finally, caregivers reported more trust in physical health providers compared to mental health providers.     

More Appreciation of Life or Regretting the Test? Experiences of Living as a Mutation Carrier of Huntington’s Disease

Little is known about how the knowledge of being a mutation carrier for Huntington’s disease (HD) influences lives, emotionally and socially. In this qualitative study 10 interviews were conducted to explore the long term (>5 years) experiences of being a mutation carrier. The results showed a broad variety of both positive and negative impact on the carriers’ lives. The most prominent positive changes reported were a greater appreciation of life and a tendency to bring the family closer together. On the other hand, some participants expressed decisional regrets and discussed the negative impact this knowledge had on their psychological well-being. The knowledge variously served as either a motivator or an obstacle in pursuing further education, career or investment in personal health. Deeper understanding of people’s reactions to the certainty of knowing they will become affected with HD is essential for the genetic counseling team in order to provide appropriate support.     

An Investigation of the Relationships Between Spirituality, Health Status and Quality of Life in Adolescents

This study examines the relationships between six spirituality-related attributes and quality of life (QOL) in adolescents, and the extent to which these relationships are mediated by perceived physical and mental health status and five important life domains (family, friends, living environment, school experiences, and perception of self). The data were obtained via a cross-sectional health survey of 8,225 adolescents in British Columbia, Canada. Structural equation modeling was used to test the hypothesized relationships. All spiritual attributes are significantly associated with three or more of the life domains, and four of the attributes significantly explain global QOL after controlling for the other variables in the multivariate model. The attributes indicative of adolescents’ feelings about their future and other existential matters were found to be relatively most explanatory with respect to global QOL. The predominant mediators include adolescents’ satisfaction with their family, their perceived self, and their perceived mental health status. Spirituality is important with respect to adolescents’ QOL. The multivariate model provides preliminary insights into the relevance of several attributes of spirituality and the possible mechanisms by which these attributes may contribute to adolescents’ QOL.     

疑病者与疑似病者之比较研究

疑病者与疑似病者,在基础心理特征方面存在较大差异,也有一定的共性,两者都构成诊断结果,会给当事人带来心理上焦虑、不安等情绪。疑病者的心理问题是内生性的,与精神倾向及人格有关,疑似病者的心理问题是外生性的,与机体症状有关。疑病者与疑似病者的角色在一定条件下可以相互转化,疑病者在长期不良心境下可变为疑似病者,具有高神经质人格的疑似病者易转变为疑病者。在心理干预过程中,应该注意到这两者不同的特点,采取不同的措施。     

Parental Locus of Control and Family Functioning in the Quality of Life of Children with Sickle Cell Disease

The objective was to examine the association of parental locus of control (PLOC) with pediatric quality of life (QOL) for children with sickle cell disease (SCD), specifically addressing the potential mediating role of family functioning. Associations with disease severity were also investigated. Thirty-one primary caregivers completed standard measures of parental locus of control, family functioning, and quality of life during their child's inpatient admission for pain or fever. Results indicated that the PLOC total score was significantly associated with QOL in terms of self-competence and showed marginal significance with QOL social competence; it was significantly negatively correlated with family functioning. The association of the PLOC with QOL subscales was maintained when controlling for family functioning. Disease severity was not associated with PLOC scores. Primary caregivers endorsed more external parental locus of control beliefs. Further investigation of the association of caregiver appraisals and family functioning is warranted with the goal of addressing the stress that disease management with sickle cell may add to parent–child relationships.     

Psychological Distress in Caregivers of Liver and Lung Transplant Candidates

Although organ transplantation represents a stressful experience for the entire family, surprisingly little research has focused on the adjustment of caregivers. The purpose of this study was to examine what caregivers report to be the greatest benefits and stressors pretransplant, the prevalence of psychological distress and caregiver strain in pretransplant caregivers as compared to normative populations, and the physical, psychological, and demographic variables that predict distress. Fifty-two caregivers of transplant candidates (28 liver and 24 lung) completed a series of questionnaires, including the Psychosocial Adjustment to Illness Scale (PAIS-SR), SF-36 Health Survey, Caregiver Strain Index (CSI), and qualitative questions about benefits and stressors. The most commonly reported benefit of being a caregiver could be categorized as Helping the Patient, and the most common stressors were associated with Uncertainty/Waiting/Fears. Compared to normative samples of caregivers of patients with Alzheimer's disease, caregivers of liver transplant candidates reported more caregiver strain; there were no differences for lung transplant caregivers. Caregiver social functioning was found to be the only significant predictor of caregiver distress, with those caregivers who report greater distress also reporting extreme and frequent interference with normal social activities. Implications of these findings for psychological interventions are discussed.     

Feasibility of a Telephone Intervention for HIV Patients and Their Informal Caregivers

Objectives: To assess the feasibility of a telephone intervention for HIV-positive patients and their caregivers. Methods: HIV-positive participants, some co-enrolled with their informal caregiver, enrolled in this randomized study. Intervention-arm participants (124 patients and 76 caregivers; dyads assigned to same arm) received up to 12 scheduled calls from an interventionist over 6 months. Results: An average of 7.6 (SD = 3.0) calls to each participant was completed; 66.5% received at least 6 calls; 43.0% received more than 75% of the intervention (defined as ‘study adherent’). Having a higher T-cell count was associated with call adherence (p = .014); cocaine use was associated with reduced call adherence for both patients (p = .019) and caregivers (p = .083). Common telephone themes included problems with mood, relationships, finances, housing, and work; interventions (e.g., referral for mental health care) were initiated in response to these. Participant satisfaction was high, and many reported benefits from the intervention. Conclusions: Using a telephone intervention with HIV-positive patients and their caregivers is a feasible and potentially beneficial intervention.     

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.     

A Longitudinal Study of Coping Strategies and Quality of Life Among People with Multiple Sclerosis

The current study was designed to examine the role of coping strategies on quality of life (QOL) of people with multiple sclerosis (MS) over a period of 12 months. Respondents were 321 people with MS and 239 people from the general population who completed measures of QOL on two occasions, 12 months apart. People with MS also completed measures of how they coped with their illness. The results demonstrated that people with MS experienced lower levels of QOL at both points in time. For people with MS, QOL domains strongly predicted other QOL domains at both time 1 and time 2. The coping strategies of social support, focusing on the positive and wishful thinking were consistent predictors of physical QOL, psychological QOL, social QOL and environmental QOL. These findings indicate that coping strategies play an important role in predicting the QOL of people with MS.     

A Cognitive Psychophysiological Model to Predict Functional Decline in Chronically Stressed Older Adults

The current study evaluated whether psychological distress (composite of depression, anxiety, vital exhaustion), inflammation (C-reactive protein, CRP) and cognitive function (Digit Symbol Test, DST) and their changes mediated the relationship between caregiver status and functional decline. Caregivers for spouses with Alzheimer’s disease were compared to demographically-similar non-caregiver spouses at study entry (T1), T2 (1 year later), and T3 (2 years after T1). Caregivers had greater functional impairment, higher distress scores, and poorer DST scores at all points of measurement and also showed functional decline. Non-caregivers did not demonstrate functional decline. Caregivers declined 85% faster than did non-caregivers. Regressions showed that after controlling for functional impairment at T1, illness, medication, and health behavior covariates, psychological distress at T1 and increases in CRP from T1 to T3 mediated the difference in functional decline. Moreover, after DST decline from T1 to T2 was entered in the model, caregiver status, psychological distress and increases in inflammation all showed reductions in their predictive importance. These findings suggest psychological distress and increases in inflammation may help explain why caregivers show greater functional decline than non-caregivers. However, the influences of these psychophysiological variables may be driven in part by cognitive decline prior to functional decline. This article is based upon an invited address, “Potential Hazards of Caring for a Loved One with Alzheimer’s Disease” given by the first author in recognition of the author’s receipt of the Association of Psychologists in Academic Health Centers 2005 Award for Distinguished Achievement in Research. The address was presented at the Annual meeting of the American Psychological Association, New Orleans, LA., August, 2006.     

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.     

Quality of life in patients before and after kidney transplantation

Abstract The aim of the present study was to differentially determine quality of life (QOL) in patients with end-stage renal disease (ESRD) after successful kidney transplantation (RT, Group A) compared with ESRD patients on a waiting list for RT (Group B). and with healthy controls (Group C) because opinions vary as to which treatment modality can best assure ESRD patients a high QOL. Groups A, B and C each consisted of 149 persons, matched for age and gender. The Munich Quality of Life Dimensions List (MLDL) was used to measure global aspects of QOL. Distinct aspects of QOL were investigated by the Brief Symptom Inventory (BSI) and the Questionnaire for Social Support (K-22). Groups A and C reported similar QOL. Which was significantly higher than in group B (p < .0001). This was particularly true for the physical and psychological status and daily activities, but not for the social situation. Groups A and B reported similar social support, which was significantly, lower than in group C (p < 006). Both ESRD groups reported higher satisfaction with social support than healthy controls (p < .0001). Successful RT nor only improved distinct aspects of QOL in patients with ESRD, but even put them on par with healthy controls regarding physical and psychological QOL. Lower social support and higher satisfaction with social support in both groups of ESRD patients should be evaluated further. From a clinical viewpoint. the improvement of physical and psychological aspects of QOL in RT patients is impressive; but more attention should be paid to constantly low social support in this group of patients. International multi center longitudinal studies to investigate QOL in ESRD patients under different treatments am necessary.     

Primary and Secondary Caregiver Reports of Quality of Life in Pediatric Asthma: Are they Comparable?

This study aimed to compare primary and secondary caregiver QOL within families of children with asthma and determine the potential importance of including secondary caregiver QOL in clinical and research settings. Participants included 118 families of children with asthma that had primary and secondary caregivers. Families completed measures in a single research session. Caregivers reported on QOL, psychological functioning, and family burden; children completed a measure of QOL. Child lung function was determined from objective spirometry. Adherence to prescribed controller medication was measured for 6 weeks following the research visit. Primary caregiver QOL was significantly lower than secondary caregiver QOL (Mean overall QOL of 5.85 versus 6.17, p < .05). Better medication adherence was associated with higher primary caregiver QOL (ρ = .22, p = .02); secondary caregiver QOL, not primary caregiver QOL, was positively associated with child QOL (ρ = .20, p = .03). Families with discrepant QOL scores between caregivers (difference in scores of at least .50) were characterized by more family burden and primary caregiver psychological symptoms. Differences in QOL scores between caregivers may be a reflection of primary caregivers’ greater investment in daily asthma management. In families reporting low burden and few psychological difficulties in the primary caregiver, QOL assessments from either caregiver may may be informative and representative of how parents are adapting to child asthma. In families experiencing high levels of burden or more primary caregiver psychological difficulties, QOL reports from secondary caregivers may not be as clinically meaningful.