Psychological adjustment to craniofacial conditions (excluding oral clefts): A review of the literature

Objective: A congenital craniofacial anomaly (CFA) is expected to impact upon several domains of psychological, emotional and social functioning, yet no recent reviews have comprehensively summarised the available literature. Further, existing reviews tend to draw upon literature in the field of cleft lip and palate, and do not give substantive attention to other types of CFAs.

Design: A review of 41 papers published between January 2000 and March 2016 pertaining to psychological adjustment to CFAs.

Main outcome measures: Findings are presented according to key psychological domains: General Psychological Well-being, Quality of Life, Behaviour, Emotional Well-being, Social Experiences, Appearance, and Treatment-Related Experiences.

Results: Current literature offers a contradictory picture of adjustment to CFAs. Psychological adjustment appeared to be comparable to norms and reference groups in approximately half of the papers related to non-syndromic CFAs, while more variation was found across domains among samples with syndromic CFAs. Associations were found between adjustment, physical health and cognitive function in several papers. The review identified a number of gaps in the literature, such as the inclusion of a wide range of diagnoses within research samples.

Conclusions: This review demonstrates the complexity of findings, both within and across domains, and highlights a number of methodological challenges.     

Maternal interactive behaviour towards children with and children without cleft lip and palate

The present study examined qualitative and quantitative differences in maternal interactive behaviour towards infants with and without cleft lip and palate (CLP). Thirty-three mother-child pairs with CLP and 34 pairs without CLP were videotaped at 3, 6, 9, and 12 months of age in two sorts of play situations at home. In addition, the mothers were questioned by letter about their ability to recognize and interpret the child's signals; their willingness to respond to such signals; and the duration of shared daily activities in the context of feeding and play. The results showed that mothers of CLP children are somewhat less sensitive than other mothers. In addition, it appeared that CLP children play less with other people. Longer feeding times for CLP children appeared to be restricted to the age of 3 months. It is suggested that mothers of CLP children may be comparatively directive and stimulating because of uncertainty about additional deficiencies. Furthermore, they may be inclined to keep their children away from the outside world.     

Psychological growth and well-being in individuals born with cleft: An application of self-determination theory

Objective: Many studies of individuals born with cleft lip and/or palate (CLP) address the psychological impact of CLP in terms of stigma and/or ‘resilience’. The present study challenges the usefulness of resilience in CLP research with the application of self-determination theory (SDT). It is proposed that SDT can serve to better understand how individuals born with CLP can achieve psychological growth and well-being.

Design: Interviews were conducted with 15 individuals born with CLP in the UK.

Results: A thematic analysis was conducted and four main themes emerged: (1) personal challenges, (2) support and strategies for social interaction, (3) experience of treatment and outcomes, and (4) personal development. The thematic analysis and the interpretation in the context of SDT leads to a greater understanding of the development of psychological growth and well-being in individuals born with CLP.

Conclusion: Interpreting the life experiences of individuals with CLP through the theoretical lens of SDT allows the conceptualisation of individuals with CLP as a positive psychological resource when faced with the exclusionary practice of stigma. This resourcefulness is primarily nurtured by a supportive family and social environment that leads to the development of positive psychological growth and well-being. A new direction in CLP research is proposed that seeks to inform and implement change in professional practice to support individuals with CLP and their families.     

应用自然辩证法原理指导唇腭裂畸形的序列治疗

唇腭裂畸形是人类最常见的先天发育性缺陷之一.序列治疗的方法是治疗唇腭裂畸形的有效方法.但是由于其中存在着许多矛盾,使得序列治疗变得很复杂.使用自然辩证法的基本原理来为患者设计治疗计划,有助于简化治疗方案,选择最优方案,从而实现无论在形态与功能,还是心理上,均能使患者达到与正常人一样或接近一致的治疗目的.     

Psychological wellbeing and quality of life in amyotrophic lateral sclerosis: A review

Amyotrophic lateral sclerosis is a fatal neurodegenerative disease with a progressive and rapid course that, so far, cannot be stopped or reversed. The psychological impact of the disease is huge, on both patients and caregivers. This review summarizes studies that have investigated quality of life, depression, anxiety, pain, spiritual and existential issues, hope, and hopelessness in the ALS field, with attention to both patients and their caregivers. Psychological support and the possible role of psychologists in the ALS field are also discussed.     

Greeting skills: A systematic review of the literature

Individuals with disabilities often demonstrate difficulty in social communication skills such as greetings. Studies have shown that deficits in greetings may negatively affect social interactions and vocational opportunities. Therefore, previous research has evaluated a variety of teaching procedures to increase greetings for individuals with disabilities with varying efficacy. This review of the literature provides an overview of studies to date in which greetings were taught to individuals with intellectual disabilities. A variety of teaching procedures were identified, and implications of those procedures are discussed. Results suggest that multiple teaching procedures may be effective; however, component analyses, further replication, and modified generalization procedures are necessary. Implications for future researchers include identifying a technological definition of greetings and evaluating effective teaching procedures and generalization strategies. Implications for practitioners include teaching one greeting type at a time, limiting the number of social skills taught simultaneously, identification of effective teaching procedures and generalization considerations.     

Coping styles in adults with cystic fibrosis: implications for emotional and social quality of life

As life expectancy increases, interest has grown surrounding the factors that may influence quality of life (QOL) for people with cystic fibrosis (CF). The aim of the current study was to examine which specific coping styles were positively or negatively associated with social and emotional QOL in a CF sample. One hundred and twenty-two respondents aged 18 and over were recruited through an online support group. Respondents completed the ‘CF Questionnaire-Revised (CFQ-R)’ and the ‘Brief COPE’. The CFQ-R is a disease-specific instrument designed to measure the impact of CF on nine QOL domains and the Brief COPE is a 28 item questionnaire which assesses 14 coping scales. A multivariate regression model revealed that higher substance abuse and disengagement was associated with lower emotional QOL whereas greater use of religion, instrumental coping and acceptance was positively associated with emotional QOL. Active coping was linked to better social QOL and a negative association was reported between distraction coping with both emotional and social domains. Given the burden of CF, ascertaining which factors enhance or diminish emotion and social well-being is now an integral component of QOL research. The current findings may therefore have value in informing clinical interventions which aim to cater for the psychological needs of individuals with CF.     

The effects of early relational antecedents and other factors on the parental sensitivity of mothers and fathers

This study examines the effect of early relational antecedents (ERA, i.e. the quality of parenting parents recalled receiving as children), parenting stress, marital stress, socio‐economic factors and children's characteristics (gender and disability condition) on the parental sensitivity of mothers and fathers. The sample consisted of 116 mothers and 84 fathers of 117 eighteen month old children drawn from a larger longitudinal study on the adaptation of parents to a child with a disability. Thirty‐four children were diagnosed with Down syndrome (DS), 51 with a cleft lip and/or palate (CLP), and 32 were non‐disabled children. Multiple regression analyses reveal that mothers' sensitivity is best predicted by her level of education and family income, whereas fathers' sensitivity is best predicted by their ERA, marital stress, family income and the child's disability condition. Mothers with more education and a greater family income displayed a greater sensitivity to their children, as did fathers who perceive less marital stress, those with a greater family income and those who perceived their parents as less controlling. Also, fathers of children with DS displayed less sensitivity for their children than fathers of children with CLP or fathers of non‐disabled children. These results concord with many studies about the importance of socio‐economic factors, ERA, marital stress, parent's gender and children's factors in the understanding of parental sensitivity. Copyright © 2003 John Wiley & Sons, Ltd.     

Aboriginal perceptions of social and emotional wellbeing programs: A systematic review of literature assessing social and emotional wellbeing programs for Aboriginal and Torres Strait Islander Australians perspectives

Australian Aboriginal and Torres Strait Islander communities have been targets of social and emotional wellbeing programs for many years. However, the few health-care programs and services that are evaluated rarely provide insight into the participants' perspectives of program success or failure. This systematic review assessed 33 social and emotional wellbeing programs across Australia to better understand what Aboriginal community members think about the programs and how they could be improved. Results highlighted the interesting and valuable insights provided by Aboriginal participants, including what kinds of program activities and approaches are most suitable, what program characteristics are successful or desired, and their experiences of wellbeing change before and after program participation. They likewise voiced opinions about poorly received programs, culturally inappropriate services and negative experiences. This review highlighted how health and wellbeing programs must better engage Aboriginal and Torres Strait Islander clients to ensure that services are culturally safe, holistic, integrate appropriate staffing, include culturally relevant activities and value patient/participant experiences. These findings have significant implications for the health and wellbeing sector; specifically, research, policy, program design and implementation, evaluation methods, and self-determination.     

Emotional competence and quality of life of children with asthma: The mediating effect of coping strategies

This study explored the mediating effect of coping strategies on the relationship between emotional competence (EC) and quality of life (QOL) among children with asthma. Participants were 87 children (M age?=?11.72, SD?=?2.58) with controlled and partially controlled asthma, undergoing everyday treatment. They filled in questionnaires assessing EC, coping strategies and QOL. Results showed that the association between some ECs and the QOL of children with asthma was fully mediated by two maladaptive cognitive coping strategies. Among children with asthma, a greater ability to differentiate their emotions, a reduced attention to bodily signals of emotions and a reduced analysis of their current emotional state were related to decreased engagement in two coping strategies (‘Ignoring Asthma’ and ‘Worrying about Asthma’), which in turn increased their QOL. These findings show that EC has an indirect effect on QOL through very specific coping strategies. They also emphasise the importance of screening EC in children with asthma and the importance of developing and using multidisciplinary interventions for them.     

Social cognition models and health behaviour: A structured review

Abstract

A number of social cognition models have been developed to account for socio-demographic variations in health behaviour. This paper distinguishes between: (a) motivational, (b) behavioural enaction, and (c) multi-stage models of health behaviour. The models are evaluated in terms of advancement of existing knowledge and - where appropriate - predictive utility. Common themes that appear within- and between- these categories are discussed, with consideration of ways in which theory may be advanced by future research. Each approach has associated strengths and weaknesses, suggesting that a “consensus” approach to the study of health behaviour may prove fruitful. Identification of the key constructs across different model types would allow coherent integration and promote further understanding of the psycho-social determinants of health behaviour.     

定序变量回归模型在心理数据分析中的应用

定序变量在心理现象和心理数据中随处可见, 采用综合的定序变量回归分析模型可以对“镜像模式”和“漏斗模型”的心理现象做出合理的解释和预测。首先通过非参数检验对影响因素进行初步降维, 其次用Probit定序回归对降维后的影响因素贡献率进行判别, 从而进一步筛选具有显著性判断水平的有效指标, 最后用Logistic回归模型对某种特定的心理现象发生与否进行信息量足够大的解释和预测。大学毕业生工作生活质量满意度的预测对这种综合定序变量回归分析模型的实例拟合, 证实了综合定序变量回归分析模型在心理现象和心理数据分析中的应用价值。     

The influence of different dialysis modalities on the quality of life of patients with end-stage renal disease: A systematic literature review

Objectives: This study aims to generate evidence regarding the relationships of different dialysis modalities with HR-QOL.

Design: A systematic review was conducted to investigate the HR-QOL of patients treated with different dialysis modalities.

Methods: A literature search was conducted for English language articles in the CINAHL, Medline and PubMed databases published from January 1990 through May 2016. Specifically, we sought articles that would compare the HR-QOL of hemodialysis (HD) and peritoneal dialysis (PD) patients in terms of physiological, psychological and social functioning, as well as disease symptoms. Thirty-four articles met the study inclusion criteria and were included into the analysis.

Results: The research results indicated no significant differences in HR-QOL between HD and PD treatment. However, a higher percentage of patients who received PD had a better HR-QOL in terms of physiological, psychological, social and disease symptoms.

Conclusions: Despite the fact that the results of this study showed no difference in HR-QOL between HD and PD treatment, its review of relevant references can serve as a reference for health professionals. However, patients’ conditions must still be taken into account when making suggestions about which dialysis modality a patient should use.     

The Role of the Dominant Social Paradigm in the Quality of Life/Environmental Interface

In this examination of the relationship between quality of life and the environment, it is argued that a broad framework within which the relationship can be established is required. The framework used is that of the dominant social paradigm (Pirages & Ehrlich, 1974) that contains political, economic, and technological institutions. It is these institutions that determine both the quality of life and environmental constructs within any society. The paper integrates these three areas in a single model that hypothesizes a particular relationship between the dominant social paradigm, the environment, and quality of life.     

社区老年人的生活质量与心理健康:SEM研究

在Lawton理论框架以及先前研究基础上,进一步对上海社区老年人生活质量与心理健康进行研究。采用结构方程建模的方法对老年人健康生活质量(QHL)、客观生活环境质量(QOE)与心理健康(PWB)的理论构念及其相互关系的理论模型予以实证研究。结果表明,该模型与社区老人测评数据(N=262)的拟合度良好,证明QHL对PWB具有显著正面影响,QOE与QHL显著相关且直接或间接地正面影响PWB。研究表明良好身体健康状况、行为调适能力以及家庭一社区养老环境对促进老人心理健康具有重要意义。     

Characteristics of Personal Networks Associated with Physical and Psychological Quality of Life Among Demobilized Individuals from the Colombian Armed Conflict

The study identifies relationships between the characteristics of personal networks of demobilized individuals and their quality of life, through the evaluation of a sample of 102 ex‐combatants from a demilitarized zone in Colombia's Caribbean coast. The data was processed using centrality values calculation and statistical analysis through the Pearson correlation coefficient. Results showed moderate levels of nodality, proximity and intermediation degrees regarding small, closed networks with an unsatisfied high demand for support resources. Quality of life showed medium performance levels, with inverse relationships between mental health (p = .009 < .05) and vitality (p = .011 < .05) and intermediation. Positive feedback related significantly to general health (p = .041 < .05), while negative interactions showed inverse relationships to physical functioning (p = .012 < .05), physical role (p = .005), mental health (p = .001 < .05), and emotional role (p = .009 < .05). In conclusion, among the highly cohesive personal networks, there were less observations of social support that fosters increased energy and psychological health, given that access to this support is limited to a small number of members of the personal network. Copyright © 2013 John Wiley & Sons, Ltd.     

Empowerment meets narrative: Listening to stories and creating settings

Comments on and summarizes some of the themes of a special issue on empowerment. Extends empowerment theory with the suggestion that both research and practice would benefit from a narrative approach that links process to practice and attends to the voices of the people of interest. Narrative theory and method tends to open the field to a more inclusive attitude as to what counts as data and to cross-disciplinary insights as well as citizen collaboration. Communal narratives are defined at various levels of analysis, including the community, the organizational, and the cultural. A definition of empowerment that includes a concern with resources calls attention to the fact that communal narratives and personal stories are resources. Implications for personal and social change are suggested.