Prospective individual and social predictors of changes in adjustment for patients attending a regional cancer service

Purpose

This study applied the social-cognitive processing (SCP) model to examine whether positive (social support) and negative (social constraints) aspects of the social environment influenced emotional distress, quality of life (QoL), well-being, and benefit finding after cancer.

Methods

Participants were 439 adults at a median of 66 weeks post-diagnosis and 79 % of them had completed cancer treatments. Outcome measures and predictors were assessed twice, 6 months apart, and their relationships were analyzed using hierarchical multiple regressions.

Results

Participants reported improved physical QoL at retest. Correlations showed that better outcomes for depression, anxiety, QoL, and well-being were associated with higher social support and lower social constraints. In addition, benefit finding correlated with social support but not social constraints. After other predictors were taken into account, lower initial social constraints were modestly associated with improved mental QoL at retest. Higher social constraints scores also predicted the development of clinically significant depression and anxiety.

Conclusions

Results provided some support for the SCP model’s prediction that both positive and negative aspects of social environment can contribute to adjustment in people with cancer. Although several findings supported the model, a heterogeneous sample and small effect sizes indicate that replication and further study is needed.     

Competing explanations for associations between marital status and health.

This paper is based on baseline data from a survey of 1042 fifty-five year olds living in the Central Clydeside Conurbation, who constitute the eldest cohort of the 'West of Scotland Twenty-07 Study'--a longitudinal study of health and everyday life. The relationship between marital status and a number of measures of health and illness is explored. The paper examines which of four 'social causation' explanations--that married people have better health because they have more material resources, less stress, indulge in less risky health behaviour and have more social support--can actually account for the observed patterning. It finds that more risky health behaviour (measured by smoking and drinking), and 'objective' levels of social support, cannot account for very much of the effect of marital status on health measures; but that material resources, stress and perceived quality of social support could do so. However, elucidation of the direction of the relationships between these explanations and health measures, and indeed of the effect of health 'selection' into and out of marriage must await future sweeps of this longitudinal study.     

Depressed Mood and Social Support as Predictors of Quality of Life in Women Receiving Home Health Care

We examined relationships among depressed mood, social support and quality of life in 58 medically ill low-income women 40 years and older receiving home health care. Analyses showed a negative relation ship between depressed mood and quality of life (p’s ≤ 0.05). Positive relationships were found between number of people avail able for support and two of three quality of life domains as well as sat is faction with support and all three domains (p’s ≤ 0.05). Results also provided preliminary support that belonging to a church is related to emotional well-being (p = 0.039) and among those belonging to a church, recent increased activity was related to social/family well-being (p = 0.004). Mediational analyses revealed a cycle of depressed mood, dissatisfaction with social support, and loss of social support providers underlying the poor quality of life of many participants. This high lights the need to address the relation ship between depression and social support when treating patients with chronic illness.     

Older people receiving family‐based support in the community: a survey of quality of life among users of ‘Shared Lives’ in England

Shared Lives (adult placement) is a model of community‐based support where an adult who needs support and/or accommodation moves into or regularly visits the home of an approved Shared Lives carer, after they have been matched for compatibility. It is an established but small service which has been used mainly by people with learning disabilities but which has the potential to offer an alternative to traditional services for some older people. However, there is little research on the outcomes for older users of Shared Lives. This paper presents findings from a survey of 150 older people using Shared Lives support across 10 Shared Lives schemes in England, which took place between June 2013 and January 2014. The aim was to identify outcomes for older users of Shared Lives and compare these to outcomes for older users of other social care services. In the absence of an ideal study design involving randomised allocation, statistical matching was used to generate a comparison group from the Adult Social Care Survey from 2011/12, with 121 cases matched to 121 Shared Lives cases. The main outcome measures were Social Care‐Related Quality of Life (measured by the ASCOT) and overall quality of life. Findings indicated that Shared Lives can deliver good outcomes for older people, particularly for overall quality of life. In comparison to the matched group of older people using other forms of support, there was some evidence that Shared Lives may deliver better outcomes in some aspects of quality of life. Limitations to the research mean, however, that more work is needed to fully understand the role Shared Lives could play in supporting older people.     

上海地区艾滋病患者的生存质量及其影响因素

目的调查中国文化背景下,在上海地区检测求治的艾滋病患者的生存质量现状及其影响因素。方法以世界卫生组织生存质量测定简表(WHOQOL-BREF)和访谈法分别对78名及118名患者进行定量和定性研究。结果患者生存质量在心理健康、生理健康、人际关系和社会环境4个方面都较差,突出表现为持续而严重的自卑感,身体免疫力低,日常生活严重受损;获得的社会支持较少,社会歧视严重;患者及其家庭经济负担沉重。主要影响因素有2大类:动力性因素包括应对风格、自我认知;资源性因素包括社会支持、生理健康和经济状况;这5个方面存在相互作用。结论在上海地区就诊的艾滋病患者生存质量总体较差,其影响因素间存在相互作用。     

罕见病患者社会支持与生命质量的关系研究

目的:利用2016年中国罕见病群体生存状况调查数据,通过分析罕见病患者生命质量各维度现状及其与社会支持的关系,为完善罕见病患者社会保障政策提供参考。方法:评价工具采用WHOQOL-BREF量表,运用滚雪球抽样调查方法,通过网络和电话调查方式收集数据,采用t检验分析与中国常模数据进行比较,并使用线性回归模型考察非正式、正式社会支持与罕见病患者生命质量的关系。结果:罕见病患者生命质量的各维度得分(生理、心理、社会、环境领域)均显著低于中国常模正常组和疾病组的生命质量评价得分,说明罕见病对居民的生命质量负面影响显著。非正式和正式社会支持与罕见病患者生命质量相关,非正式社会支持水平越高,患者各领域的生命质量越好;曾接受过社会帮扶的患者,心理领域和社会领域的生活质量水平高于未曾接受的患者。结论:改善患者的社会支持水平,完善罕见病的社会保障政策,对提高患者的生命福祉有一定的意义。     

Benefits of Family and Social Relationships for Thai Parents Living with HIV

Family and social relationships are important structural supports in Thailand that are likely to influence the health and mental health of persons living with HIV (PLH). Structural equation modeling examined these relationships among 409 PLH in two communities in Thailand. Latent variables were constructed for most outcomes and mediators, with adherence to antiretroviral (ARV) therapy, depression, and disclosure represented by single-item indicators. All models controlled for gender, age, and education. Disclosure was significantly and positively associated with ARV adherence, and to both family functioning and social support. Family functioning and social support were significantly related to the PLH’s self-perceptions of health and mental health, as well as being significantly correlated with each other. Better family functioning was significantly associated with better quality of life, better perceived health, fewer symptoms of depression, and greater ARV adherence. Social support was significantly associated with better quality of life and fewer depressive symptoms. These results highlight the important role that an organized and structured family life and social support network can play in encouraging better health outcomes among PLH.     

社会支持与宫颈癌患者生活质量的相关性分析

目的 了解宫颈癌患者社会支持与生活质量的特性,分析二者之间的相关性,探讨提高患者生活质量的有效途径.方法 分别用自行设计的一般情况问卷、生活质量核心问卷(EORTC QLQ-C30)、社会支持量表(SSRS)对2014年3至2016年3月在西安交通大学第一附属医院行综合性治疗的302例宫颈癌患者进行问卷调查.结果 宫颈癌患者生活质量较差;社会支持总分高于国内常模(t=4.308,P<0.001);社会支持与宫颈癌患者生活质量呈正相关(r=0.638,P<0.01).结论 宫颈癌患者的生活质量与社会支持密切相关,护理过程中要重视患者的社会支持,以提高患者的生活质量.     

Empowering elderly Iranians through a social group work intervention: A trial study to assess the effect of the intervention on participants' quality of life

We designed and ran an empowerment‐oriented social group work intervention to assess whether the intervention could improve the quality of life of older Iranians. The intervention consisted of nine group sessions that focused on capacity building and increasing individual competences, environmental resources and opportunities. Using a randomised controlled trial (RCT), 60 elderly people (30 men and 30 women in the intervention and control groups) from Social Services Centres in Tehran Municipality participated in this study. The WHOQOL‐BREF instrument was used to measure quality of life, comparing before, after and follow‐up measures between the groups and within each group. ANOVA and GEE tests were applied to analyse the data. The results showed significant progress in overall quality of life of the participants, particularly in the domains of physical health, psychological health, social relationships and environmental health. In pretest, there were no significant differences between the groups in terms of quality of life and its domains, but there were significant differences in the post‐ and follow‐up tests. This study provides support for the empowerment‐oriented social group work intervention with Iranian elderly people. This kind of intervention can be a useful model for empowering older people, especially in countries where social support and health services for seniors are not yet freely available.     

Perceived social support predicted quality of life in patients with heart failure, but the effect is mediated by depressive symptoms

Purpose

Depressive symptoms and inadequate social support are well-known independent predictors of increased mortality and morbidity in heart failure (HF). However, it is unclear how depressive symptoms and social support interact to influence quality of life. Thus, the purpose of this study was to determine the nature of the relationships (direct, mediator, and moderator) among depressive symptoms, social support, and quality of life in patients with HF.

Methods

We performed a secondary data analysis that included 362 patients with HF who completed the measures of depressive symptoms (the Beck Depression Inventory-II), perceived social support (the Multidimensional Scale of Perceived Social Support), and quality of life (the Minnesota Living with Heart Failure Questionnaire) instruments. The direct, mediator, and moderator effects of both depressive symptoms and social support on quality of life were tested using multiple regressions and 2 × 2 ANCOVA.

Results

Less social support and greater depressive symptoms independently predicted poorer quality of life. The relationship between social support and quality of life was mediated by depressive symptoms. Neither social support nor depressive symptoms moderated quality of life.

Conclusion

Promotion of social support will improve quality of life only when depressive symptoms are also effectively managed.     

Perceptions of people with mild intellectual disability and their family members about family-based social capital in the Netherlands

Families play an important role in the lives of people with intellectual disability as they do for everyone. However, little research has addressed the views of people with intellectual disability about their families by using self-report. Individual family members may hold different views about their family relationships. Therefore, we used a social capital theoretical perspective to examine (a) how perceptions of people with mild intellectual disability (MID) about their family support networks compare to those of their family members and (b) what factors are associated with any diverging perceptions. Randomly selected participants with MID (n = 111) and their family members (n = 111) were interviewed individually at their homes using the Family Network Method—Intellectual Disability (FNM-ID). The FNM-ID examines how people define their family groups and how they perceive existing supportive relationships within this group. The findings showed that participants with MID perceived that they had somewhat denser family networks (i.e., bonding social capital) than family members perceived them to have and were more likely to report bridging social capital. They reported more relationships that involved them providing support to family members. This difference in estimation was greater when the participant with MID displayed higher levels of externalizing behaviour problems. They also perceived more reciprocity in their relationships with family. No differences were found in the estimated numbers of significant family members and relationships in which support was received. It is concluded that people with MID and their family members have different perceptions on several aspects of the family support network. Family professionals and services should seek the views of people with intellectual disability and their family members when carrying out assessments or organizing supports.     

Developing attributes for a generic quality of life measure for older people: preferences or capabilities?

Current UK policy with respect to the provision of health and social care for older people suggests that greater integration is required. Economists' attempts to assist resource allocation decisions, however, are very health focused, with concentration on the use of health-related quality of life measures. This paper reports an attempt to determine attributes for a new index clearly focusing on quality of life for older people rather than health or other influences on quality of life. In-depth interviews were conducted with 40 purposively selected informants aged 65 and over in private households to explore their views about what is important to them in terms of quality of life. Data were analysed using Framework qualitative analysis. Initial discussions tended to concentrate upon factors influencing quality of life including activities, relationships, health, wealth and surroundings. Further probing and analysis suggested five conceptual attributes: attachment, role, enjoyment, security and control. The data also suggested that the quality of informants' lives was limited by the loss of ability to pursue these attributes. So, for example, it is not poor health in itself, which reduces quality of life, but the influence of that poor health upon each informant's ability to, say, be independent, that is important. Amartya Sen's work on functioning and capability is particularly pertinent here. Using this work, it is possible to interpret the five conceptual attributes as a set of functionings-important for older people in the UK in the 21st century-but noting that it is the capacity to achieve these functionings that appears to be of importance. This suggests that further development of this measure should focus on an index of capability rather than preference-based utility.     

The contribution of physical and social activity participation to social support and happiness among people with physical disabilities

BackgroundPrior studies have suggested that certain leisure activities provide health benefits to people with physical disabilities. Participation in social activities has been identified as a strong predictor of active coping strategies and social support from others. In addition, leisure-time physical activity (LTPA) has been found to be positively associated with health perceptions and quality of life.ObjectivesThe purpose of this study was to investigate the relationships between social activity and LTPA to social support and life satisfaction among people with physical disabilities.MethodsData were collected from Korean Association of Persons with Physical Disabilities. A total of 351 surveys were used.ResultsResults indicated that social activity, emotional and informational support, and tangible and affectionate support were significantly associated with happiness. However, there were no direct effects of LTPA and positive social interaction support on happiness. The study results showed significant direct effects of LTPA on emotional and informational support and positive social interaction.ConclusionThis study shows that it is important for people with physical disabilities not only to participate in LTPA, but also to be provided with opportunities for social activities. In particular, the importance of social activity to Korean people with physical disabilities as a means of receiving social support and increasing happiness was confirmed. The results suggest that practitioners need to create a variety of social activity opportunities, such as online social participation programs, community-based social programs, and social events for health.     

Personal resiliency: serious diagnosis and prognosis with unexpected quality outcomes

In this grounded theory study we set out to identify what was common in stories of people with serious disease who had less than a 10% chance of survival, and who had a good quality of life at the time of first interview. A core category of personal resiliency was the organizing theme. This was a way of being and acting in the world that had the person strongly connected to life through relationships and a quality-of-life experience that made their illness secondary to their living. Whereas individual participants might not have had this sense of resiliency at the beginning of their illness, they developed it during the time they were ill, both prior to and during their recovery. Resiliency has five dimensions: Connectedness to their social environment, to family, to their physical environment, to their sense of inner wisdom (experiential spirituality), and a personal psychology with a supportive mindset and way of living which supported their values.     

女性不孕症患者生活质量影响因素的研究现状

不孕症（infertility）是一种特殊的生殖健康缺陷性疾病,严重影响着患者的生活质量。关于不孕症对生活质量的影响因素是多方面的,包括社会人口学（年龄、教育程度、经济状况、职业、居住地、不孕类型、不孕年限）、生活习惯、人格、躯体状况、心理因素、家庭因素、社会支持等。近来研究结果发现,女性不孕患者生活质量与教育程度、经济收入、职业地位、不孕年限、生活习惯、生理和心理状态、社会支持呈正相关,而与居住地为农村、继发性不孕、内向性格、家庭关系较差呈负相关。对多种影响因素的研究现状和进展加以综述分析,以期能够指导医护人员在工作中重视不同影响因素以及患者的个体差异,为开展相关研究及促进女性不孕症患者及时就医提供依据,从而提高患者对治疗的耐受力,改善其生活质量。     

Social determinants of health,emergency department utilization,and people with intellectual and developmental disabilities

BackgroundPeople with intellectual and developmental disabilities’ (IDD’s) health is largely dependent on the government services they receive. Medicaid managed care has emerged as one mechanism used to provide services to people with disabilities in an attempt to reduce costs. In managed care, there has been an emphasis on reducing emergency department visits and hospital admissions in an effort to reduce expenditures.ObjectiveThe purpose of this exploratory study was to examine the impact social determinants of health –“conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks” (n.p.)¹ – had on the emergency department utilization of people with IDD.MethodsWe had the following research question: what is the relationship between social determinants and emergency department utilization (visits) among adults with IDD? To explore this research question, a negative binomial regression analysis was used with secondary social determinant outcomes data (from Personal Outcome Measures®) and emergency department visit data from a random sample of 251 people with IDD. We also examined relationships with participants’ demographics.ResultsOur findings revealed for every one unit increase in the number of social determinant outcomes present, there was a 7.97% decrease in emergency department visits. There were also significant relationships between emergency department visits, and complex support needs, intellectual disability level, primary communication method, and residence type.ConclusionsSocial determinants are critical to promote the quality of life and health equity of people with IDD.     

What is considered important for life balance? Similarities and differences among some working adults

Life balance seems subjective, health related, and multidimensional. However, the concept is complex. Exploring what people themselves consider more or less important for their life balance and whether this differs between people would develop new knowledge. Q methodology was chosen for the present study, in which 32 working men and women without recent long-term sick leave participated. They sorted 42 statements regarding life balance according to their importance for each participant's life balance. The analysis resulted in four different viewpoints concerning life balance. All four viewpoints considered good relationships with those closest to them, as well as knowing that these people were doing well, as important. Each viewpoint also showed a unique orientation towards what was considered important for life balance: occupational balance (viewpoint 1), self-actualization (viewpoint 2), self-awareness (viewpoint 3), and reciprocal relationships (viewpoint 4). The results. showed support for life balance as being a subjective, multidimensional, and health-related phenomenon. The results demonstrated the importance of relationships for life balance and heterogeneity in what people considered important for their own life balance.     

The influence of social stigma and discriminatory experience on psychological distress and quality of life among rural-to-urban migrants in China

The global literature has revealed a potential negative impact of social stigma on both physical and mental health among stigmatized individuals; however, the mechanisms through which social stigma affects the individual’s quality of life and mental health are not well understood. This research simultaneously examines the relationships of several determinants and mediating factors of psychological distress and quality of life. Data were collected through a cross-sectional survey among 1006 adult (predominantly male) rural-to-urban migrants in 2004–2005 in Beijing, China. Participants reported on their perceived social stigma, discriminatory experiences in daily life, preparation for migration, discrepancy between expectation and reality, coping with stigma-related stress, psychological distress, and quality of life. Structural equation modeling was performed. We found that perceived social stigma and discriminatory experiences had direct negative effects on psychological distress and quality of life among rural-to-urban migrants. Expectation-reality discrepancy mediated the effects of perceived social stigma and discriminatory experiences on psychological distress and quality of life; coping mediated the effect of social stigma on quality of life. Psychological distress was associated with quality of life. Preparation prior to migration was positively related to coping skills, which were positively related to quality of life. We conclude that perceived social stigma and daily discriminatory experiences have a significant influence on psychological distress and quality of life among rural-to-urban migrants. Pre-migration training with a focus on establishment of effective coping skills and preparation of migration may be helpful to improve their quality of life and mental health.     

The passing dilemma in socially invisible diseases: narratives on chronic headache

This contribution concerns the experience of chronic diseases and how it disrupts the trajectory of a person's biography, undermining his/her identity, self-reliance and social relationships. The study focuses particular attention on those diseases which have not yet been fully acknowledged and can, therefore, be considered a socially invisible disease: chronic headache is one of these. Thirty-one life stories were collected from patients attending a specialized headache centre in Northern Italy, and selected in order to include all common varieties of chronic headache. Following the principles of grounded theory, interviews began by adopting a minimal theoretical framework which consisted of asking people how they became aware of the objective (disease), subjective (illness) and social (sickness) aspects of their condition. The analysis highlighted particular points in the patients’ life trajectories: first, the biographical disruption that takes place because of the disease; second, how people succeed or fail in identity negotiation, which is vital for developing an acceptable social representation of the disease. Results show that patient's choices follow a vicious circle, where a partial social representation of the disease is produced. People who suffer from chronic headache face a dilemma in social relationships: should they conceal their disease, or make it evident? If they conceal, any possible social representation of the disease is denied, which could lead to carrying the burden of the disease alone, with no social support. On the other hand, making chronic headache visible could result in stigma.