121 resultados para Multiple sclerosis - Patients - Family relationships

em Deakin Research Online - Australia


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Populations with insufficient ultraviolet exposure and who consume diets low in vitamin D have low vitamin D status (plasma 25-hydroxyvitamin D (25(OH)D) concentrations) and a reported higher incidence of multiple sclerosis (MS). The active form of vitamin D, 1,25-dihydroxyvitamin D3 (1,25(OH)2D3), is an effective anti-inflammatory molecule. No research to date has assessed 1,25(OH)2D3 concentrations in individuals with MS. In this study, plasma concentrations of 25(OH)D, 1,25(OH)2D 3 and parathyroid hormone (PTH) were measured in 29 individuals with MS and 22 age- and sex-matched control volunteers. There were no significant differences in plasma PTH, 25(OH)D and 1,25(OH)2D3 concentrations between individuals with MS and control volunteers. Women with MS had significantly higher 25(OH)D and 1,25(OH)2D3 concentrations than men with MS (79.1 ±45.4 versus 50.2±15.3 nmol/L, P=0.019 and 103.8± 36.8 versus 70.4±28.7 pmol/L, P=0.019, respectively). There was a significant positive correlation between 25(OH)D and 1,25(OH)2D 3 concentrations in all subjects (r=0.564, P=0.000), but secondary analysis revealed that the correlation was driven by women with MS (r=0.677, P= 0.001). Significant sex differences in vitamin D metabolism were observed and were most marked in individuals with MS, suggesting that vitamin D requirements may differ between the sexes, as well as by underlying disease state.

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The findings of this thesis supported a model proposed to explain the influence of psychological factors on subjective quality of life. In comparison with their partners, and with a control group, people with MS reported a lowered subjective quality of life and self-esteem, an increased need for social support, and maladaptive use of control. Recommendations for interventions were made based on these findings.

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The model was tested using a scale specially designed to assess the impact and symptoms of MS. Results indicate that people with MS manage better when self-esteem, optimism, physical activity, and social support are present. Therapists should promote these factors, among people with MS, to foster resilience and reduce its impact.

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This study was designed to evaluate the impact of an exacerbation in symptoms among men and women with multiple sclerosis (MS) on sexuality and relationship satisfaction. A total of 321 people with MS (120 men, M age = 48.10 years; 201 women, M age = 45.78 years), and 239 people from the general population (79 men, M age = 53.93 years; 160 women, M age = 45.89 years) completed measures of relationship satisfaction and sexuality, and then completed these measures again 18 months later. The results demonstrated that both men and women with MS reported significantly higher levels of sexual dysfunction than did the general population. The no exacerbation group also reported significantly lower levels of sexual activity and of relationship satisfaction than the general population group over the 18-month period. Women in all groups reported significantly higher levels of sexual dysfunction but also higher levels of sexual activity than did men at each time period. They also reported significantly higher levels of sexual satisfaction at the 18-month follow up. These results suggest that men and women respond in similar ways to MS, and that people with MS do not necessarily experience poorer levels of sexual interaction or relationship quality when they experience an increase in their physical symptoms.

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The current study was designed to evaluate the impact of health, social relationships, work and coping on the adjustment and self-esteem of people with multiple sclerosis (MS). The participants were 251 people with MS (84 men, 167 women) and 184 people from the general population (56 men, 128 women). Data were obtained on the above variables using an anonymous questionnaire. In order to determine the impact of these relationships over time, the questionnaire was completed on two occasions, 18 months apart. The impact of health, social relationships, work and coping at time 1 on adjustment and self-esteem at time 2, was explored. The results indicated that there was a high level of stability in the levels of adjustment and self-esteem among both populations over time. People with MS experienced poorer adjustment and self-esteem, as well as poorer health, lower quality relationships, and lower work capacity than people from the general population. People with MS were also less likely to adopt problem focused or seeking social support coping, and more likely to adopt a detached style of coping. For both the MS and general populations, the most important predictors of adjustment and self-esteem at time 2 were time 1 levels of the same variables, with health, social relationships, work or coping strategies explaining little of the variance in time 2 levels of adjustment. The implications of this level of stability on the psychological adjustment of people with MS are discussed.

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Background: There has been limited research on the role of financial strain on the adjustment of people with multiple sclerosis.

Aims: This study examined the financial costs of MS and the impact of financial strain on the quality of life and adjustment of people with MS and their families.

Methods: Interviews were conducted with 16 health professionals, 26 people with MS and 11 family members of people who have MS.

Results: Economic deprivation impacted on the subjective well being of many families living with MS. Concerns included adjustment to a lower income if the person with MS reduced or ceased work, and meeting the costs of home alterations, mobility equipment, and special transport. The additional cost of living with MS is a stress factor, especially for people dependent on disability support pensions.

Conclusions: It is anticipated that the findings from this study will raise the awareness of health professionals and politicians regarding the potential impact of financial stress on people with MS and their families.

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This study examined the financial costs of multiple sclerosis (MS) and the impact of financial strain on the subjective quality of life of people with MS and their families. Due to the lack of research in this area, a qualitative research design was employed. Interviews were conducted with 16 health professionals, 26 people with MS, and 11 family members of people who had MS. Adjusting to actual or threatened loss of income caused financial stress. These financial struggles led to a lower quality of life among respondents. Problem solving, coping, and positive reappraisal helped people to adjust to financial changes. Professionals focused on increased funding for services, whereas people with MS focused on improved income support. These findings highlight the need for professionals to consider the financial strain associated with this disease and the impact of this strain on the quality of life of individuals with MS and their families.

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Background - Increasingly, evidence-based health information, in particular evidence from systematic reviews, is being made available to lay audiences, in addition to health professionals. Research efforts have focused on different formats for the lay presentation of health information. However, there is a paucity of data on how patients integrate evidence-based health information with other factors such as their preferences for information and experiences with information-seeking. The aim of this project is to explore how people with multiple sclerosis (MS) integrate health information with their needs, experiences, preferences and values and how these factors can be incorporated into an online resource of evidence-based health information provision for people with MS and their families.

Methods - This project is an Australian-Italian collaboration between researchers, MS societies and people with MS. Using a four-stage mixed methods design, a model will be developed for presenting evidence-based health information on the Internet for people with MS and their families. This evidence-based health information will draw upon systematic reviews of MS interventions from The Cochrane Library. Each stage of the project will build on the last. After conducting focus groups with people with MS and their family members (Stage 1), we will develop a model for summarising and presenting Cochrane MS reviews that is integrated with supporting information to aid understanding and decision making. This will be reviewed and finalised with people with MS, family members, health professionals and MS Society staff (Stage 2), before being uploaded to the Internet and evaluated (Stages 3 and 4).

Discussion -
This project aims to produce accessible and meaningful evidence-based health information about MS for use in the varied decision making and management situations people encounter in everyday life. It is expected that the findings will be relevant to broader efforts to provide evidence-based health information for patients and the general public. The international collaboration also permits exploration of cultural differences that could inform international practice.

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Both Attention-Deficit/Hyperactivity Disorder (AD/HD) and divorce are very prevalent in western societies, and they may occur together. AD/HD is generally viewed as a neurobiological disorder, which has led to a commonly held belief that social-environmental factors play little role in the symptom profile of children diagnosed with the disorder. This study investigated the association between parental divorce, remarriage, multiple transitions, the quality of relationships with family members and the psychological well-being of children and adolescents with AD/HD. First, differences in children’s AD/HD symptom profiles in relation to parents’ divorce status (single/multiple divorce) and family composition (single parent/stepfamily) were examined. Second, the association between the quality of children’s relationships with each family member and parents’ marital status (divorced/non-divorced) and family composition was investigated. In addition, age, gender and AD/HD subtype differences were assessed. Third, the association between the quality of children’s interactions with family members and children’s AD/HD symptom profile was explored. No significant differences in children’s behavioural profiles were found in terms of parents’ divorce status. Living in stepfamilies was associated with greater AD/HD severity and social malfunctioning. Disruptive parent–child and sibling relationships were found to be related to children’s age, gender, AD/HD subtype and parents’ marital status. Further, poor interactions with family members correlated with children’s AD/HD severity and psychological well-being. In summary, divorce, remarriage and the quality of relationships with family members are important correlates of the symptom profile of children with AD/HD, and this emphasises the need for special treatment modules for these families.

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This paper evaluated the quality of life (QOL) of people with multiple sclerosis (MS) and people from the general population. Gender differences between the 2 groups of respondents and the influence of coping style on adjustment were also evaluated. The participants were 381 (144 males, 237 females) people with MS, and 291 (101 males, 190 females) people from the general population. The results demonstrated that people with MS experienced lower levels of QOL than people from the general population for both the objective and subjective dimensions of all domains (physical health, psychological adjustment, social relationships, environmental adjustment). All coping strategies (problem-focused, focusing on the positive, detachment, wishful thinking, seeking social support) were important predictors of QOL for both males and females with MS, with wishful thinking being the strongest predictor of poor QOL. These results are discussed in terms of the various factors that impact on QOL among people with MS, and the types of coping strategies that are most adaptive in improving the QOL of people with this illness.

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The study evaluated relationships and sexuality among people with multiple sclerosis (MS) and their partners. The results were compared to findings among couples in the general population. Participants were 45 heterosexual people with MS and their partners and 32 heterosexual people from the general population and their partners. There was a high level of concordance between the views of couples from the general population, but not among couples where one partner had MS. Partners of people with MS were more likely than people with MS to feel that MS had a negative impact on the physical and emotional support in their relationship. People with MS also experienced more problems in their relationship and sexual functioning, but not their sexual satisfaction, than people from the general population. The implications of these results in terms of support programs for people with MS and their partners are discussed.

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Thirty-one parents with multiple sclerosis (MS) participated in a study to investigate the adjustment of their children, 24 boys and 24 girls aged 4 to 16 years. The majority of parents believed that their illness had an effect on their children. The perception of parents regarding their children's problems in the areas of emotions, concentration, behavior, or social interactions indicated that the children were at three times greater risk than the general community of developing psychological problems. In contrast, actual symptom scores reported by parents revealed that, although these children were at greater risk than the general community of developing peer problems, little difference was found on hyperactivity, emotional symptoms, conduct problems, or total difficulties. Parental negative affect predicted both parental reports of peer problems and perceptions that the parents' illness had an effect on their children. Parental relationship satisfaction and family income did not predict parental reports of children's level of adjustment. These results indicate that children of parents with MS demonstrate more difficulties in how they relate to others, the distress they experience, and how they manage their lives, rather than revealing higher levels of symptoms. Since the data were based on parental reports of their children's problems, the results may also be due to negative affect among the parents.

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With the advent of MRI scanning, the value of lumbar puncture to assess oligoclonal band (OCB) status-for the diagnosis of multiple sclerosis (MS) is increasingly uncertain. One major issue is that the reported frequency of cerebrospinal fluid (CSF)-restricted oligoclonal banding for the diagnosis of MS varies considerably in different studies. In addition, the relationship between OCB positivity and disease outcome remains uncertain, as reported studies are generally too small to assess comparative disability outcomes with sufficient power. In order to further investigate variation of OCB positivity in patients with MS, we utilized MSBase, a longitudinal, Web-based collaborative MS outcomes registry following clinical cohorts in several continents and latitudes. We also assessed whether OCB positivity affects long-term disability outcome. A total of 13,242 patient records were obtained from 37 MS specialist centres in 19 different countries. OCB status was documented in 4481 (34%) patients and 80% of these were OCB positive. The presence of OCB was associated with degree of latitude (p = 0.02). Furthermore, the outcome of patients negative for CSF-specific OCB was significantly better in comparison to the OCB positive patients, as assessed by Expanded Disability Status Scale change (p < 0.001). The results of this study indicate that latitude could explain some of the inconsistencies in OCB status reported in different populations. The study confirms that OCB positivity in MS is associated with a worse long-term prognosis.