A conceptual model of adaptation to illness and quality of life for cancer patients treated with bone marrow transplants

A conceptual model of adaptation to illness/treatment and quality of life in cancer and especially bone marrow transplant patients is presented. The process from the diagnosis of a life–threatening disease to adaptation to it is divided into five stages. This process starts with the initial stimuli (stressor) and the appraisal/perception of that as a threat (stage I), and continues with the reaction to the stressor, if it is perceived as a threat (stage II). This is the time that, if manipulation of the stressor with appropriate interventions occurs, prevention of ineffective coping and/or maladjustment to illness is possible. The third stage refers to the coping with the illness (adaptive or maladaptive coping), followed by the degree of adaptation to illness and satisfaction with daily life (quality of life). Depending on interventions applied at this stage, the outcome can be either adjustment to illness or maladjustment and low quality of life (final stage). In every stage of the process, certain physiological, psychological, social and developmental variables are important, and these are described, based on research findings. Assessment of these variables is necessary for more effective planning of care and application of nursing interventions. Such a model can provide a conceptual framework for the assessment and evaluation of quality of life in cancer/bone marrow transplant patients and can help health professionals, and nurses in particular, to develop their own assessment tools and plan care and/or interventions based on such a holistic assessment.     

Self-concept of siblings of children with cancer

Childhood cancer can have detrimental effects on the psychosocial well-being of healthy siblings of children with cancer. The limited research done over the past 40 years has identified adjustment difficulties such as poor self-concept, depression, sorrow, anxiety, and feelings of loneliness in children who have a sibling with cancer. To date, clinical research investigating self-concept is scarce as it relates to siblings of children with cancer. The purpose of this study was to examine self-concept in siblings of children with cancer who attended summer camp. A nonprobability purposive sample consisted of 50 school-age siblings of children with cancer. Using the Personal Attribute Inventory for Children (PAIC) to measure children's self-concept, the researcher found that healthy siblings who attended summer camp scored higher on the PAIC than healthy siblings who did not attend camp. This research suggests that social support such as a camp experience may play an important function in coping with having a brother or sister with childhood cancer.     

Mucho camino: the experiences of two undocumented Mexican mothers participating in their child's early intervention program.

OBJECTIVE: This study describes the experiences of two mothers of Mexican origin who are immigrants living under undocumented status in the United States and who participated in their children's early intervention programs. METHOD: In-depth interviews, archival data, and participant observation conducted with two mothers of children with special needs provided data for this case study design research. A phenomenological analytical approach and qualitative data analysis software were employed to gain understandings particular to each family's experience. RESULTS: These families share similar experiences and interactions with many other families in the United States who live within the context of having a child with a disabling condition. Constraints on family functioning related to the families' status of undocumented immigration included: mothers as active participants in their children's early intervention programs, mothers' understanding of their children, mothers' communication with service providers, and life as an immigrant family of Mexican origin living under undocumented status. CONCLUSIONS: The examination of how these mothers negotiated family life while participating in their child's early intervention program provides an appreciation for how these families view the long road--"mucho camino"--involved in achieving their family's well-being.     

Test of a conceptual model of uncertainty in children and adolescents with cancer

Despite recognition as a significant stressor in childhood cancer, illness‐related uncertainty from the perspective of children remains under‐studied. We tested a conceptual model of uncertainty, derived from Mishel's uncertainty in illness theory, in 68 school‐aged children and adolescents with cancer. As hypothesized, uncertainty was significantly related to psychological distress, but only one hypothesized antecedent (parental uncertainty) significantly predicted children's uncertainty. An alternative model incorporating antecedent developmental factors (age and illness‐specific expertise) explained 21% of the variance in child uncertainty; controlling for stage of treatment, uncertainty was higher in children with shorter time since diagnosis, older age, lower cancer knowledge, and higher parental uncertainty. These findings provide the foundation for further studies to understand children's management of uncertainty and its contribution to psychological adjustment to illness. © 2010 Wiley Periodicals, Inc. Res Nurs Health 33:179–191, 2010     

Parental influence on models of primary prevention of cardiovascular disease in children.

BACKGROUND: Lifestyle behaviors such as overeating and physical inactivity contribute significantly to CVD, the leading cause of morbidity and mortality among adults globally. CVD risk factors that begin in children often track into adulthood. Parents are believed to influence the health behaviors of their children. OBJECTIVE: To review the literature on parental influence on children's health beliefs and behaviors, particularly eating and exercise behaviors as indicators of CV health, school-based CVD risk reduction programs, and racial/ethnic, gender and socioeconomic considerations for models of primary prevention of CVD in children. METHODS: Seventeen studies that included parents as either a source of information, change agent or participant in a CVD risk reduction intervention were identified searching the Medline, CINAHL and PsycINFO databases from 1980 through 2002. RESULTS: Children's lifestyle health beliefs and behaviors are significantly influenced by positive parental modeling and involvement in exercise and healthy eating; parental influence on children's behavior lasts beyond adolescence; parents are effective teachers of health habits at home when prompted by health educators; and parental influences vary by ethnicity/race, socioeconomics and gender. CONCLUSIONS: A broader base of knowledge that is socioculturally sensitive must be developed about what parents and children believe is healthy, how parents model beliefs and behaviors for their children, and how to build self-efficacy for positive health behaviors.     

Uninsured but eligible children: are their parents insured? Recent findings from Oregon

BACKGROUND: Despite expansions in public health insurance programs, millions of US children lack coverage. Nearly two-thirds of Oregon's uninsured children seem to be eligible for public insurance. OBJECTIVES: We sought to identify uninsured but eligible children and to examine how parental coverage affects children's insurance status. METHODS: We collected primary data from families enrolled in Oregon's food stamp program, which has similar eligibility requirements to public health insurance in Oregon. In this cross-sectional, multivariable analysis, results from 2861 surveys were weighted back to a population of 84,087 with nonresponse adjustment. Key predictor variables were parental insurance status and type of insurance; the outcome variable was children's insurance status. RESULTS: Nearly 11% of children, presumed eligible for public insurance, were uninsured. Uninsurance among children was associated with being Hispanic, having an employed parent, and higher household earnings (133-185% of the federal poverty level). Children with an uninsured parent were more likely to be uninsured, compared with those who had insured parents (adjusted odds ratio 14.21, 95% confidence interval 9.23-20.34). More surprisingly, there was a higher rate of uninsured children among privately-insured parents, compared with parents covered by public insurance (adjusted odds ratio 4.39, 95% confidence interval 2.00-9.66). CONCLUSIONS: Low-income Oregon parents at the higher end of the public insurance income threshold and those with private insurance were having the most difficulty keeping their children insured. These findings suggest that when parents succeed in pulling themselves out of poverty and gaining employment with private health insurance coverage, children may be getting left behind.     

Psychological adjustments made by postburn injury patients: an integrative literature review

Title.  Psychological adjustments made by postburn injury patients: an integrative literature review.
Aim.  This paper is a report of a review examining the variables that predispose individuals to significant psychological maladjustment following burn injury.
Background.  The psychological sequelae of burn injury are well documented; however, the variables that influence individuals' adjustment following burn injury lack consideration.
Data sources.  MEDLINE, Cumulative Index of Nursing and Allied Health, and Psychological Abstracts were searched using the keywords burn injury, psychological, psychosocial, rehabilitation, premorbid psychopathology, adjustment, reintegration, body image, post-traumatic stress disorder, depression, coping. Other sources were found from a manual search of nursing, medical and psychological literature and references of identified and related papers. The search strategy was limited to English-language research published between 1997 and 2008.
Review methods.  An integrative review of the studies was conducted over a 6-month time period during 2007–2008.
Results.  Burn patients are a heterogeneous group and typically have comorbidities. While preburn personality and coping strategies can influence long-term psychological adjustment, the relationship between postburn adjustment and burn size and severity, and gender are poorly understood. Much of the literature focuses on the prevalence of psychological maladjustment rather than on identifying variables that influence psychological adjustment.
Conclusion.  The diversity and complexity that characterize burn patients lead to unique adjustment difficulties. Recognizing these difficulties is the first step to offering appropriate intervention and treatment for this unique patient group.     

The impact of chemotherapy-induced cognitive impairment on the psychosocial adjustment of patients with nonmetastatic colorectal cancer

Colorectal cancer is the third most commonly diagnosed cancer in Canada. Chemotherapy often is used as treatment for colorectal cancer, and studies have documented cognitive changes in patients after chemotherapy treatment. What remains unclear is the impact of such changes on a person's roles and relationships, herein referred to as psychosocial adjustment. The purpose of this research was to explore group differences in psychosocial adjustment and chemotherapy-induced cognitive impairment in patients with colorectal cancer. Participants were assessed cross-sectionally, at various time points along their treatment trajectory, using the Psychosocial Adjustment to Illness Scale-Self-Report (PAIS-SR) and the Cambridge Neuropsychological Test Automated Battery (CANTAB). A statistically nonsignificant negative association was indicated between PAIS-SR and CANTAB results, indicating that they would have no meaning in a clinical context. No differences between groups were observed in terms of cognitive ability; however, patients who completed chemotherapy appeared to be at a higher risk for psychosocial maladjustment. This study suggests that cognitive changes do not influence patients' relationships and functional roles, as indicated from the PAIS-SR.     

舌癌患者术后适应不良的康复护理

总结了46例舌癌切除术后患者术后适应不良的因素：生理适应不良、心理适应不良及礼会适应不良，认为应对各种适应不良作针对性的护理：指导语言、咀嚼和吞咽功能训练，调整患者的不良心理，注重调动患者的社会支持系统。     

Hospital staff perceptions of parental involvement in paediatric hospital care

AIM: This paper reports a study of hospital staff perceptions of parental involvement in children's hospital care. BACKGROUND: Previous research has shown that parents are expected and encouraged by hospital staff to be actively involved in the care of their hospitalized children. At the same time, parents have expressed a need for improved communication with paediatric hospital staff to clarify both parental and staff expectations and preferences about this involvement. Few studies, however, have studied hospital staff perceptions of parental involvement in the care of hospitalized children and their implications for clinical work. METHODS: A cross-sectional questionnaire study was conducted among paediatric hospital staff in October of 2003. Questionnaires were distributed to a total of 338 staff, including all physicians, Registered Nurses and nursing auxiliaries working on oncology, surgery and neurology units in three university children's hospitals in Sweden. RESULTS: A total of 207 questionnaires were returned, yielding a response rate of 61%. Exploratory and confirmatory factor analyses of the 26-item questionnaire resulted in the creation of two indices, Work Routines and Work Strain. Oncology staff reported having better work routines for involving parents in their children's care and they experienced less strain from parental demands compared with staff on other paediatric units. Staff perceptions and workplace routines regarding parental involvement did not differ statistically significantly by profession or by length of work experience. CONCLUSION: Staff perceptions of parental involvement may be related to clinical specialty. Oncology units may find it easier to establish routines for parental involvement, thereby experiencing less work strain in their interactions with parents. There is a need to further study staff perceptions of parental involvement and their implications for the staff work situation in both Sweden and other countries.     

In whose care and custody? Orphans of the HIV epidemic

The clinical care of HIV-infected parents is enhanced by a comprehensive approach to the parent's needs, including concerns about the patient's childrens' health, school and behavioral problems, financial benefits, housing, and legal issues. Tens of thousands of children in the United States are faced with the reality of losing a parent to AIDS, with the hardest-hit cities being New York, Newark, Miami, San Juan, Los Angeles, and Washington, D.C. Only recently have services extended to children who have lost one or both parents to AIDS. Researchers must turn to stress and bereavement research of children who have lost parents to cancer since research in the AIDS arena is sparse, but some findings have been helpful. Important findings include the following: environments that foster open communication of feelings to enhance children's adjustment to parental death, and parents need to plan for the future custody of their children.     

森田疗法治疗新兵适应障碍

目的探讨森田疗法治疗新兵适应障碍的疗效。方法对38例新兵适应障碍患者采用森田疗法进行心理治疗,观察治疗全程。于治疗前后采用症状自评量表进行评定分析。结果入组患者经森田疗法治疗后症状自评量表评分除精神病性因子分无显著变化外,总分及各因子分均显著低于治疗前（P〈0．05或0．01）;所有患者心理冲突减轻或消失,情绪稳定,人际关系得到显著改善,不适应状态基本消除。结论森田疗法能有效缓解新兵适应障碍的各种症状,疗效显著,是治疗新兵适应障碍的有效心理干预方法。     

Korean mothers' psychosocial adjustment to their children's cancer

BACKGROUND: During the course of adjustment to their child's illness and medical treatment, parents of children with cancer may experience numerous challenges and difficulties. Although parental adjustment has been a research topic for many years, little research has been conducted among families in different cultures and countries. AIM: To identify factors that influence maternal psychosocial adjustment to childhood cancer using a new cultural group: Korean. METHODS: A sample of 200 Korean mothers of children with cancer was included in the study. Guided by the double ABCX model of family adjustment and adaptation, a series of variables (i.e. maternal stress, coping, social support and selected illness-related and demographic questions) were examined for their relationships with maternal psychosocial adjustment to childhood cancer. RESULTS: Using a hierarchical multiple regression, we found perceived level of stress, coping, social support, and time since diagnosis to be significant correlates of maternal psychosocial adjustment. Stress accounted for most (50%) of the total variance explained (56%) in maternal adjustment. CONCLUSION: The results suggest that the stress-coping framework may be appropriate in explaining maternal responses to childhood cancer across cultures.     

Stress, coping, and adjustment in children with a chronic disease: a review of the literature

Purpose: To review the literature on the consequences of having a chronic disease on the child's functioning in daily life. Method: A wide search of the literature resulted in the location of around 200 empirical studies with a focus on chronically ill children. This body of literature is discussed in three parts: (1) the academic and psychosocial adjustment of chronically ill children, (2) the ways chronically ill children cope with disease-related stress and other stressors, and (3) the effectiveness of coping strategies. Results: Children with a chronic disease do not show lower school performance despite higher absence rates (an exception is epilepsy). Their self-concept is similar to that of healthy children. However, they show more behaviour problems, especially internalizing problems such as depression and social withdrawal. The authors could not find evidence for the claim that children with a chronic disease are more frequently confronted with stress than their healthy peers. Children with a chronic disease use a variety of coping strategies to deal with various disease-related and common stressors. The coping strategies they use in relation to common stressors appear to be similar to those of healthy children. Conclusion: Incidences of maladjustment vary across studies and different chronic diseases. Most studies on coping lack situational sensitivity, which makes it impossible to compare results. Findings on the effectiveness of these children's coping strategies are still scarce and inconclusive. Recommendations for future research on coping with chronic disease in childhood are given.     

Research Article: Effects of a cognitive adjustment program for Thai parents

Child physical abuse is recognized as a major public health problem that affects children and is likely to become increasingly common. The objective of this study was to examine the effects of a cognitive adjustment program on parental attitudes toward child rearing and the potential for this abuse. Child‐care centers were randomly allocated to either the intervention or the control group. The sample included 116 Thai parents of children aged 1–6 years. The intervention group attended the cognitive adjustment program while the control group received the usual services. The results showed that, after program completion, the intervention group had statistically significantly better parental attitudes toward child rearing, but not a significantly lower potential for CPA than the control group. We concluded that the cognitive adjustment program was effective in altering parental attitudes toward child rearing. However, in order to enhance its efficacy, the program should be modified to be more intensive and it should be studied further for its effect on the potential for abuse.     

Parent and adolescent adjustment to pediatric cancer: Associations with coping,social support,and family function

This article presents preliminary results investigating the relationship between parental and adolescent adjustment and coping and their relationship to social support and family functioning in a sample of adolescents (ages 11-18) with cancer and one of their parents. Parents and adolescents from two pediatric oncology clinics completed measures of distress, coping, social support, and family cohesion/adaptability. Low levels of distress were reported by both children and their parents with positive correlations noted between parent and child adjustment. Adolescents reported that their parents and a close friend were the greatest sources of social support and described their families as having a high degree of cohesion and adaptability. Both adolescents and parents used more adaptive than maladaptive coping strategies, although distress was associated with reduced use of adaptive coping. Adolescents are able to adapt to cancer in the context of strong family and social supports. In addition, there is a relationship between parental and adolescents adjustment, and between greater use of adaptive coping styles and lower distress.     

Adjustment to diabetes mellitus in preschoolers and their mothers

Although preschool-aged children with diabetes might be at increased risk for both general and disease-specific psychological adjustment difficulties, this issue has not been investigated. We evaluated both general and diabetes-related adjustment of 20 preschool-aged children and their mothers. The mothers completed the Child Behavior Checklist, Parenting Stress Index, Parents' Diabetes Opinion Survey, and the Preschool Diabetes Behavior Checklist. The latter measure was constructed specifically for this study to measure the frequency of oppositional and avoidance behaviors of children regarding diabetes management tasks. Mothers reported that their children displayed significantly more internalizing behavior problems (anxiety, depression, withdrawal) and were a significantly greater source of parental stress compared with corresponding nondiabetic normative group samples. Also, certain maternal attitudes about diabetes and its treatment were correlated with the children's disease-specific behavior problems. The children's general psychological adjustment, however, was not predictive of these diabetes-specific behavior problems.     

Neuman systems model-based research: an integrative review project

The project integrated Neuman systems model-based research literature. Two hundred published studies were located. This article is limited to the 59 full journal articles and 3 book chapters identified. A total of 37% focused on prevention interventions; 21% on perception of stressors; and 10% on stressor reactions. Only 50% of the reports explicitly linked the model with the study variables, and 61% did not include conclusions regarding model utility or credibility. No programs of research were identified. Academic courses and continuing education workshops are needed to help researchers design programs of Neuman systems model-based research and better explicate linkages between the model and the research.     

Issues in the assessment of children's coping in the context of mass trauma

Exposure to mass trauma has contributed to increasing concern about the well-being of children, families, and communities. In spite of global awareness of the dramatic impact of mass trauma on youth, little is known about how children and adolescents cope with and adapt to disasters and terrorism. While coping has yet to be fully conceptualized as a unified construct, the process of responding to stress includes recognized cognitive, emotional, and behavioral components. Unfortunately, research on the complex process of adaptation in the aftermath of mass trauma is a relatively recent focus. Further study is needed to build consensus in terminology, theory, methods, and assessment techniques to assist researchers and clinicians in measuring children's coping, both generally and within the context of mass trauma. Advancements are needed in the area of coping assessment to identify internal and external factors affecting children's stress responses. Additionally, enhanced understanding of children's disaster coping can inform the development of prevention and intervention programs to promote resilience in the aftermath of traumatic events. This article examines the theoretical and practical issues in assessing coping in children exposed to mass trauma, and includes recommendations to guide assessment and research of children's coping within this specialized context.     

Siblings and Family Environments of Persons With Autism Spectrum Disorder: A Review of the Literature

OBJECTIVES: The purpose of this literature review is to summarize studies on siblings of individuals with autism spectrum disorders (ASD) in four major areas, to identify gaps in the literature, and to propose future directions for research of siblings of persons with ASD. DESIGN AND METHODS: A systematic review of research published within the past 10 years in peer review journals includes investigations on siblings' and parental characteristics, as well as sibling behaviors, relationships, and adaptation. Twelve studies are synthesized to include purpose, findings, and discussion relating it to previous work. RESULTS: Siblings are influenced by the context of their families that are impacted by biological, psychological, sociological, and ecological factors. Research studies are primarily exploratory and no intervention studies are identified. CONCLUSION: The literature review of parental and sibling characteristics, relationships, and adaptation support intervention measures for siblings and family members of persons with autism. Assessment of siblings is necessary to identify those who may be at risk for future adjustment problems and maladaptive behaviors.