The impact of parental multiple sclerosis on the adjustment of children and adolescents.

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.

The relationship between religion, spirituality, psychological adjustment, and quality of life among people with multiple sclerosis

The present research was comprised of two studies that aimed to explore the role of religious and spiritual variables in the psychological adjustment and quality of life of people with Multiple Sclerosis (MS). In study 1, religious behavior and objective levels of spirituality and religiosity were not significantly related to psychological adjustment or quality of life among people with MS. Positive religious coping was negatively related to psychological adjustment and quality of life. In study 2, Intrinsic religious orientation and Quest religious orientation were related to poor psychological adjustment. Implications of the present research for people with MS and other chronic illnesses are discussed.

Role of health, relationships, work and coping on adjustment among people with multiple sclerosis: a longitudinal investigation

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.

Coping and psychological adjustment among people with multiple sclerosis

Objective
This study was concerned with examining the coping and psychological adjustment of people with multiple sclerosis (MS) and determining how they were different in these dimensions from people from the general population. The role of severity and duration of illness as well as levels of social support on coping style and adjustment were also evaluated.

Method
The participants were 381 (144 men, 237 women) people with MS and 291 (101 men, 190 women) people from the general population.

Results
The results demonstrated that people with MS (particularly men) were less likely to adopt coping styles related to problem solving and seeking support and demonstrated poorer levels of adjustment on all dimensions. Adopting a wishful thinking coping style, as well as a lack of problem-focused coping or failure to seek social support, was also more likely to be associated with poorer psychological adjustment for both men and women with MS. Levels of health impairment were only minimally related to psychological adjustment, particularly for men.

Discussion
These findings highlight the importance of developing educational programs that include strategies to adopt more problem-focused coping strategies, so that people with MS can more readily adjust to their illness.

Economic deprivation and its effects on subjective wellbeing in families of people with multiple sclerosis

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.

Quality of life and multiple sclerosis: comparison between people with multiple sclerosis and people from the general population

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.

Multiple sclerosis and economic well being: role of health, age, and duration of illness

This study used quantitative and qualitative techniques to examine the role of health, age, and duration of illness among people with multiple sclerosis (MS) in their economic well-being. Participants were 113 adults (31 males and 82 females) with MS who lived in urban and rural regions of Australia. The results demonstrated that health and age had a significant impact on both the economic well-being and psychological adjustment of people who contract this disorder. Different health variables predicted different aspects of economic well-being. Fatigue was the major health variable that predicted costs of MS and economic pressure, with age also predicting economic pressure, whereas income levels were predicted by cognitive confusion and mobility problems. Duration of illness, gender, and urban/rural location were not significant predictors of the economic variables. These results demonstrate the importance of obtaining multiple measures of economic well-being, as well as a broad range of health-related measures, in determining the impact of MS on the economic well-being of people with this disorder.

Mood and self-esteem of persons with multiple sclerosis following an exacerbation

ObjectiveThis study was designed to determine the impact of an exacerbation in the symptoms of multiple sclerosis (MS) on the mood and self-esteem of persons with MS over an 18-month period.MethodsParticipants were 243 (80 males and 163 females) persons with MS and 184 (56 males and 128 female) persons from the general population. Information was obtained about coping styles, mood, and self-esteem among all respondents at Time 1, Time 2 (6 months later), and Time 3 (18 months later).ResultsThe results demonstrated that both groups of persons with MS experienced poorer mood levels than the general population, with the exacerbation group showing the highest levels of anxiety and confusion. Coping strategies did not predict mood in either of the MS groups.ConclusionThe findings of this study demonstrate that persons with MS experience significant problems with their mood states. However, respondents need to be tracked over a longer period to further explore the role of coping strategies in the adjustment of persons with MS

The impact of the financial costs of multiple sclerosis on quality of life

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.

Presenting evidence-based health information for people with multiple sclerosis : the IN-DEEP project protocol

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.

Online health information seeking: How people with multiple sclerosis find, assess and integrate treatment information to manage their health

Background and objective: The Internet is increasingly prominent as a source of health information for people with multiple sclerosis (MS). But there has been little exploration of the needs, experiences and preferences of people with MS for integrating treatment information into decision making, in the context of searching on the Internet. This was the aim of our study. Design: Sixty participants (51 people with MS; nine family members) took part in a focus group or online forum. They were asked to describe how they find and assess reliable treatment information (particularly online) and how this changes over time. Thematic analysis was underpinned by a coding frame. Results: Participants described that there was both too much information online and too little that applied to them. They spoke of wariness and scepticism but also empowerment. The availability of up-to-date and unbiased treatment information, including practical and lifestyle-related information, was important to many. Many participants were keen to engage in a 'research partnership' with health professionals and developed a range of strategies to enhance the trustworthiness of online information. We use the term 'self-regulation' to capture the variations in information seeking behaviour that participants described over time, as they responded to their changing information needs, their emotional state and growing expertise about MS. © 2014 John Wiley & Sons Ltd.

Child maltreatment, family characteristics and adult adjustment: mediating and moderating processes

Two alternate processes that may explain the relationship between child maltreatment, childhood family characteristics and adult adjustment (mediation and moderation) were tested using retrospective data from a community sample (N = 175). The levels of five different types of child maltreatment did not mediate the relationship between childhood family variables and adult adjustment. In contrast, family background played a mediating role in the relationship between maltreatment and adjustment. Evidence of moderation was found in the interactions between different maltreatment types in predicting adjustment. Partial support was found for the moderating influence of family factors on the relationship of maltreatment to adjustment.