A one year study of coping,social support and quality of life in parkinson's disease

Abstract

The role of coping and social support in the quality of life for Parkinson's Disease (PD) patients is not well understood. Most studies are cross-sectional and concentrate on depression as an outcome measure. The aim of the present study was to explore the role of coping and social support in quality of life for patients with PD. Self-report measures were completed by 105 sufferers of PD; 75 completed the same questionnaire a year later. Patients had the most problems with social function, followed by problems with mobility control and psychological autonomy and communication. After controlling for age, gender and illness duration, the number of PD symptoms predicted mobility control, social functioning and psychological function. Passive coping explained additional variance in most functional domains with more passive coping being related to increased problems. The quality of life was highly stable over the course of the year. Active coping was related to superior psychological functioning one year later. In fact, this was the only coping and social support variable related to functioning after one year, when controlling for previous functions. The results are discussed in terms of the importance of symptom management in PD.     

Patient and Partner Quality of Life and Psychosocial Adjustment Following Radical Prostatectomy

We prospectively examined differences in quality of life and psychosocial adjustment in 80 prostate cancer patients and their partners (n = 65) beginning before radical prostatectomy and proceeding across the first year postsurgery. Both members of the couple experienced significant changes associated with the patient's cancer, however their experiences differed in some regards. Patients experienced reprieve from emotional distress and negative affect immediately following surgery despite worsened physical functioning. Partner quality of life and psychosocial adjustment scores were generally more constant from presurgery to postsurgery, with improvements noted 1 year later. For both patients and partners, cancer-specific stress symptoms declined progressively over the year. We also obtained partial support for the effectiveness of a single-session communication intervention on patient social/family wellbeing and partner general stress. Findings have implications for patient and partner adjustment following radical prostatectomy, and attest to the importance of incorporating partner evaluations into psychosocial oncology research.     

What Makes Crohn's Disease Patients Difficult to Manage? The Role of Psychosocial Factors

Most GI clinicians face the problem of a small group Crohn's Disease (CD) patients who function poorly and consume inordinate amounts of service with poor outcome. This study examines the hypothesis that psychosocial factors differentiate the CD patients who function poorly from the typical CD patient. A prototypal sample of CD patients with problems functioning, more typical CD patients (not selected for having problems in functioning), and healthy controls each completed a battery of validated psychosocial measures of disease-specific quality of life, coping skills, social support and life stress, perceived medical symptoms and life history factors. Chart data on hospital admissions, ER, GI, Surgeon, and GP visits were also collected. The CD patients with problems functioning reported more symptoms (GI and non-GI) and had many more ER, GI, and GP visits than the typical group. Psychologically, those with problems functioning had poorer quality of life and were more likely to cope using emotional discharge and support seeking. They experienced significantly more stress and reported a more chaotic family history. No differences on an experimental method of information processing biases were found between the CD groups, however. These results indicated that patients with problems functioning, selected by GI staff because they were best-case examples of functional difficulties, shared little with a matched group of typical CD patients. These patients likely require psychological as well as medical intervention to best manage their illness.     

Psychological assessment of quality of life following liver transplantation

Administered measures of functional status, psychological distress, and quality of life to a consecutive series of 48 liver transplant recipients in follow-up clinic. Results showed that nearly total functional recovery was the norm. Thirty-six patients (75%) had a Karnofsky Performance Status (KPS) score of 80–100. Twelve transplant recipients had KPS scores below 80; none were employed, and most had been transplanted within 1 year. In spite of their impaired financial status, eight of these 12 reported being mostly satisfied on the self-report Quality-of-Life Scale (QLS). For the posttransplant sample as a whole, 83% were mostly satisfied with their quality of life. Pre- and posttransplant patient samples were not significantly different in reporting mild emotional distress. Results for the small subgroup with significant objective or subjective problems in achieving acceptable quality of life following liver transplantation were reviewed. Higher than normal emotional distress on the Symptom Checklist (SCL-90-R) was consistently reported by these patients. Prospective studies are needed to identify predictor variables of quality-of-life problems and to develop prevention and rehabilitation interventions.     

Epidemiology of Insomnia in College Students: Relationship With Mental Health,Quality of Life,and Substance Use Difficulties

The purpose of this study was to evaluate the prevalence and correlates of insomnia using rigorous diagnostic criteria and a comprehensive assessment battery. In a large sample (N = 1,074) of college students (mean age 20.39 years), participants were asked to complete a week-long sleep diary and comprehensive questionnaire packet assessing recommended daytime functioning domains (i.e., fatigue, quality of life, depression, anxiety, stress, academic performance, substance use) during the academic year. A significant portion of this sample of college students met proposed DSM-5 criteria for chronic insomnia (9.5%). The chronic insomnia group reported significantly worse sleep, fatigue, depression, anxiety, stress, and quality of life, and greater hypnotic and stimulant use for sleep problems. There were no differences between groups on excessive daytime sleepiness, academic performance, or substance use. This was a rigorous and comprehensive assessment of the prevalence and psychosocial correlates of insomnia. Insomnia is a significant problem in college students and should be regularly assessed. More research is also needed to guide treatment in this population.     

The perception of the past,present, and future in preadolescent asthmatic children: An exploratory study

A study of preadolescent males and females determined that males and females appear to perceive their quality of life in the past year, the present, and the future year similarly. However, differences between males and females emerged in the number of psychosocial variables that were associated with the three above time periods. Results suggest that females' perception of the past, present and future are significantly associated with a host of psychosocial variables and associated with the self, while males' perception of time appears less determined by psychosocial and perception-of-self variables. This may suggest that one's sex role influences how one perceives time.     

Blameless Guilt: The Case of Carer Guilt and Chronic and Terminal Illness

My ambition in this paper is to provide an account of an unacknowledged example of blameless guilt that, I argue, merits further examination. The example is what I call carer guilt: guilt felt by nurses and family members caring for patients with palliative-care needs. Nurses and carers involved in palliative care often feel guilty about what they perceive as their failure to provide sufficient care for a patient. However, in some cases the guilty carer does not think that he has the capacity to provide sufficient care; he has, in his view, done all he can. These carers cannot legitimately be blamed for failing to meet their own expectations. Yet despite acknowledging their blamelessness, they nonetheless feel guilty. My aims are threefold: first, to explicate the puzzling nature of the carer guilt phenomenon; second, to motivate the need to solve that puzzle; third, to give my own account of blameless guilt that can explain why carers feel guilty despite their blamelessness. In doing so I argue that the guilt experienced by carers is a legitimate case of guilt, and that with the right caveats it can be considered an appropriate response to the progressive deterioration of someone for whom we care.     

Mechanisms of change in adolescent life satisfaction: A longitudinal analysis

This study explored the psychosocial mechanisms of change associated with differences in levels and linear change of adolescents' global life satisfaction across a 2-year time period. Based on a theoretical model proposed by Evans (1994), this study tested the relations between selected personality (i.e., extraversion and neuroticism) and environmental (stressful life events) variables and global life satisfaction when mediated by internalizing and externalizing problems. The results suggested support for internalizing problems as a mediator of the relationship of personality and environmental variables with life satisfaction. Pathways mediated by internalizing problems significantly predicted levels and linear change of life satisfaction across a 2-year time span. Furthermore, pathways mediated by externalizing problems significantly predicted the level but not the linear change of life satisfaction. Thus, behavior problems and their antecedents appear to relate significantly to adolescents' perceptions of their quality of life. Implications for adolescent mental health promotion were discussed.     

Quality-of-life after penile prosthesis placed at radical prostatectomy

Abstract

The clinical and psychosocial effects of immediate penile prosthesis implantation at the time of radical prostatectomy (RP) were investigated in 97 consecutive patients and 68 partners. Prosthesis recipients reported more frequent sexual contact, fewer marital problems and slightly fewer sexual functioning problems than the RP-alone patients. There were no group differences on any sociodemographic characteristics, on disease recurrence, on physical and psychosocial functioning, or on reported depression. Patients who chose the prosthesis did, however, evidence less of a link between depression and functional limitations and between depression and marital problems. They also had lower levels of agreement with their partners in reporting their own depression, as compared to the patients who opted for RP surgery alone. We conclude that the penile prosthesis was associated with an increased frequency of sexual contact, a reduction in reported marital problems, and stylistic differences between the two patient groups in dealing with affect.     

Measuring the impact of informal caring

A factor-analysis of caregiving impact appraisals amongst a community-derived sample of informal carers of elderly people revealed two negative (care work strain and relationship dissatisfaction) and two positive (care work satisfaction and care lifestyle satisfaction) scales. Validity was assessed by means of concurrent correlations with levels of assistance with daily living tasks provided by carers and levels of behaviour problems exhibited by elderly dependents. Criterion validity was considered in relation to two important carer outcomes; willingness to care and a standardized measure of strain. Each of the four scales was significantly associated with concurrently assessed willingness to care. Care work strain and relationship dissatisfaction were associated with concurrently measured strain symptomology. Evidence of 6-month predictive validity was obtained for the care work strain scale.     

The experiences of therapy from the perspectives of carers of people with dementia: An exploratory study

Design: Interviews were conducted with six carers of people with dementia about their experience of receiving counselling/psychotherapy. Interviews were conducted in the carer's own home, and data were analysed thematically using a narrative approach. Findings: Three themes were identified from the data: ‘Still doing the best I can’ (identified as losses and processes of personal growth); ‘Feeling connected and being understood’ (identified as attributes believed to be important within the therapeutic relationship); and ‘Wanting to share information’ (identified as sharing information with someone ‘neutral’). Carers placed emphasis on the age of the therapist and the amount of therapist self‐disclosure. Attending counselling and/or psychotherapy also helped the carer to find a ‘safe space’ to disclose and share concerns. Discussion: Carer loss and personal growth are explored, together with the importance of building therapeutic relationships and, for the therapist, seeking supervision when managing personal self‐disclosure. The theme of therapist self disclosure is explored together with the importance of therapists seeking supervision when managing personal self‐disclosure.     

The psychosocial purpose of driving and its relationship with the risky driving behaviour of young novice drivers

BackgroundThe overrepresentation of young drivers in road crashes, injuries and fatalities around the world has resulted in a breadth of injury prevention efforts including education, enforcement, engineering, and exposure control. Despite multifaceted intervention, the young driver problem remains a challenge for injury prevention researchers, practitioners and policy-makers. The intractable nature of young driver crash risks suggests that a deeper understanding of their car use – that is, the purpose of their driving – is required to inform the design of more effective young driver countermeasures.AimsThis research examined the driving purpose reported by young drivers, including the relationship with self-reported risky driving behaviours including offences.MethodsYoung drivers with a Learner or Provisional licence participated in three online surveys (N1 = 656, 17–20 years; N2 = 1051, 17–20 years; N3 = 351, 17–21 years) as part of a larger state-wide project in Queensland, Australia.ResultsA driving purpose scale was developed (the PsychoSocial Purpose Driving Scale, PSPDS), revealing that young drivers drove for psychosocial reasons such as for a sense of freedom and to feel independent. Drivers who reported the greatest psychosocial purpose for driving were more likely to be male and to report more risky driving behaviours such as speeding. Drivers who deliberately avoided on-road police presence and reported a prior driving-related offence had significantly greater PSPDS scores, and higher reporting of psychosocial driving purposes was found over time as drivers transitioned from the supervised Learner licence phase to the independent Provisional (intermediate) licence phase.Discussion and conclusionsThe psychosocial needs met by driving suggest that effective intervention to prevent young driver injury requires further consideration of their driving purpose. Enforcement, education, and engineering efforts which consider the psychosocial purpose of the driving are likely to be more efficacious than those which presently do not. Road safety countermeasures could reduce the young driver’s exposure to risk through such mechanisms as encouraging the use of public transport.     

Carers' attributions about positive events in psychosis relate to expressed emotion

Background

Relapse is increased in people with psychosis who live with carers with high expressed emotion (EE). Attributional style has been used to understand EE at a psychological level. Previous studies have investigated carer appraisals for negative events in the patient's life. We therefore aimed to examine spontaneous carer attributions for both negative and positive events. Further, we distinguished between high EE based on critical comments, and that based on emotional-overinvolvement.

Method

Audiotapes of the Camberwell Family Interview (CFI) (N = 70) were rated using the Leeds Attributional Coding System (LACS). Raters were blind to previous ratings of EE.

Results

In our sample, low EE carers made significantly more attributions about positive events, and less about negative events than high EE carers. This is because criticism, but not overinvolvement, was strongly associated with responsibility attributions for negative events, while overinvolvement, but not criticism, was inversely associated with responsibility attributions for positive events.

Conclusion

Carers' attributions for both positive and negative events may be a useful target for improving family interventions in psychosis.     

Adaptation to stroke using a model of successful aging

ABSTRACT

The process of adaptation to the physical and psychosocial consequences after stroke is a major challenge for many individuals affected. The aim of this study was to examine if stroke patients within 1 month of admission (n?=?153) and followed up at 1 year (n?=?107) engage in selection, optimization, and compensation (SOC) adaptive strategies and the relationship of these strategies with functional ability, health-related quality of life (HRQOL) and depression 1 year later. Adaptive strategies were measured using a 15-item SOC questionnaire. Internal and external resources were assessed including recovery locus of control, stroke severity, and socio-demographics. Outcome measures were the Stroke Specific Quality of Life Questionnaire (SS-QoL), the Nottingham Extended Activities of Daily Living Scale and the Depression Subscale of the Hospital Anxiety and Depression Scale. Findings indicated that stroke patients engaged in the use of SOC strategies but the use of these strategies were not predictive of HRQOL, functional ability or depression 1 year after stroke. The use of SOC strategies were not age specific and were consistent over time, with the exception of the compensation subscale. Results indicate that SOC strategies may potentially be used in response to loss regulation after stroke and that an individual's initial HRQOL functional ability, levels of depression and socio-economic status that are important factors in determining outcome 1 year after stroke. A stroke-specific measure of SOC may be warranted in order to detect significant differences in determining outcomes for a stroke population.     

Caring for Someone with Depression: Attitudes and Clinical Practices of Australian Mental Health Workers

Many people who support a person with depression report struggling with the carer role and being dissatisfied with the inclusivity and lack of support provided by clinicians. However, little is known about what influences the support provided to Australian carers of people with depression. To investigate this, 119 Australian mental health workers completed a self‐report questionnaire to gather information on their attitudes towards, barriers experienced and current clinical practices when working with carers of people with depression. Participants' attitudes towards family members and carers were generally positive. Reported inclusive clinical practices varied. Participants identified a number of barriers to inclusive practice that were predominantly organisational in nature. Participants who perceived more barriers reported providing more clinical interventions. Attitudes and barriers were associated with the inclusive clinical practice of participants who worked with mental health consumers, but not participants who worked with family members and carers. Even among this sample of self‐selecting clinicians, there was room for significant improvement in rates of carer inclusive practice. Further research should explore not only what inhibits but also what enables the participation of family members and carers in the care and treatment process for people with depression.     

Relations Between Coping and Positive and Negative Outcomes in Carers of Persons with Multiple Sclerosis (MS)

This study examined relations between stress and coping predictors and negative and positive outcomes in MS caregiving. A total of 222 carers and their care-recipients completed questionnaires at Time 1 and three months later, Time 2 (n = 155). Predictors included care-recipient characteristics (age, time since diagnosis, course and life satisfaction), and Times 1 and 2 carer problems, stress appraisal and coping. Dependent variables were Time 2 negative (anxiety, depression) and positive outcomes (life satisfaction, positive affect, benefits). Regressions indicated that, overall, the hypothesised direct effects of stress appraisal and coping strategies on positive and negative outcomes were supported. The hypothesised stress-buffering effects of positive reframing coping were also supported. All but one of the coping strategies were related to both positive and negative outcomes; specifically, practical assistance coping emerged as a unique predictor of distress. Of the model predictors, care-recipient life satisfaction emerged as the strongest and most consistent predictor of both positive and negative outcomes except benefit finding. Findings support the role of care-recipient characteristics and the carers appraisal and coping processes in shaping both positive and negative outcomes. The guiding framework and findings have the potential to inform interventions designed to promote well-being in carers.     

Alexithymia as a potential source of symptom over‐reporting: An exploratory study in forensic patients and non‐forensic participants

The traditional interpretation of symptom over‐reporting is that it indicates malingering. We explored a different perspective, namely that over‐reporting of eccentric symptoms is related to deficits in articulating internal experiences (i.e., alexithymia). Given that alexithymia has been linked to sleep problems and that fatigue may fuel inattentive responding to symptom lists, we administered measures of alexithymia (TAS ‐20) and symptom over‐reporting (SIMS ), but also sleep quality (SLEEP ‐50) to forensic psychiatric outpatients (n = 40) and non‐forensic participants (n = 40). Forensic patients scored significantly higher on all three indices than non‐forensic participants. In the total sample as well as in subsamples, over‐reporting correlated positively and significantly with alexithymia, with r s being in the 0.50–0.65 range. Sleep problems were also related to over‐reporting, but in the full sample and in the forensic subsample, alexithymia predicted variance in over‐reporting over and above sleep problems. Although our study is cross‐sectional in nature, its results indicate that alexithymia as a potential source of over‐reporting merits systematic research.     

Identifying illness perception schemata and their association with depression and quality of life in cardiac patients

The purpose of this paper is to identify groups of cardiac patients who share similar perceptions about their illness and to examine the relationships between these schemata and psychosocial outcomes such as quality of life and depression. A total of 190 cardiac patients with diagnoses of myocardial infarction, stable angina pectoris or chronic heart failure, completed a battery of psychosocial questionnaires within four weeks of their admission to hospital. These included the Brief Illness Perceptions Questionnaire (BIPQ), Beck Depression Inventory II (BDI II) and The MacNew Health-related Quality of Life instrument (MacNew). BIPQ items were subjected to latent class analysis (LCA) and the resulting groups were compared according to their BDI II and MacNew scores. LCA identified a five-class model of illness perception which comprised the following: (1) Consequence focused and mild emotional impact, n?=?55, 29%; (2) Low illness perceptions and low emotional impact, n?=?45, 24%; (3) Control focused and mild emotional impact, n?=?10, 5%; (4) Consequence focused and high emotional impact, n?=?60, 32%; and (5) Consequence focused and severe emotional impact, n?=?20, 10%. Gender and diagnosis did not appear to reflect class membership except that class 2 had a significantly higher proportion of AMI patients than did class 5. There were numerous significant differences between classes in regards to depression and health-related quality of life. Notably, classes 4 and 5 are distinguished by relatively high BDI II scores and low MacNew scores. Identifying classes of cardiac patients based on their illness perception schemata, in hospital or shortly afterwards, may identify those at risk of developing depressive symptoms and poor quality of life.     

Gaining and losing weight: Identity transformations

Individuals who experience weight problems frequently have a long history of weight gain and weight loss. Based on observation and participation, this study follows a group of dieters in a weight loss clinic over a period of one year. The findings suggest that social factors in the dieter's world have a significant impact on the degree of success experienced. Of particular significance are the perceptions of others once extensive weight loss occurs. It is argued that the loss of weight is only one of a number of issues that the heavy person deals with as he or she moves into the thin world.