Men,chronic illness and healthwork: accounts from male partners of women with endometriosis

Currently dominant in medical discourse, the concept of self-management sees the responsibility for health and illness shift from the state to the individual. However, while this emphasis on individual responsibility and management has burgeoned, the role and status of partners and other family members in the management of chronic illness remains under-theorised. While self-management privileges individual responsibility for the management of chronic illness, the role of partners remains unclear. This paper utilises data from a study of heterosexual couples’ experiences of living with the chronic gynaecological condition endometriosis to explore how male partners engage in its day-to-day management. In all, 22 couples participated in in-depth, semi-structured interviews with each partner interviewed separately (n = 44). Data were analysed thematically and dyadically, informed by an interpretivist relational approach. The paper utilises the concept of healthwork to describe the illness work, everyday life work, biographical work and emotion work men engaged in. The paper demonstrates how the conceptual value of healthwork is enhanced by incorporating an analysis of the emotional effort required in managing chronic illness. The paper illustrates the value of investigating the role of partners in managing chronic illness to provide a fuller account of the distributed and relational nature of healthwork.     

Family-centred care and health-related quality of life of patients in paediatric neurosciences

Background   Little is known about the influence of contextual factors such as health services characteristics on health-related quality of life (HRQL) for children with a neurological condition. To address this gap, we conducted an exploratory study of the relationship between family-centred care (FCC) and HRQL outcomes in children from neurosciences clinics in a large acute care hospital.
Methods   A total of 187 family caregivers completed questionnaires regarding their socio-demographic status, the severity of their children's condition (FIM™), perceptions of their children's HRQL (PedsQL 4.0) and their experiences of FCC (MPOC-20). Hierarchical regression analyses explored the hypothesis that FCC is a significant predictor of children's HRQL, independent of illness severity.
Results   Illness severity and FCC jointly explained one-third of the variance in children's total HRQL. When FCC was controlled for illness severity, it remained a significant predictor of physical, psychosocial and total HRQL scores.
Conclusions   This study provides evidence that the level of FCC is positively related to paediatric HRQL independent of neurological illness severity. The implication is that the uptake of FCC practices by service providers can positively impact the quality of life of children with neurological disorders.     

慢性病儿童父母情绪障碍及影响因素分析

目的 探讨慢性病对患儿家长心理和情绪的影响.方法 采用医院焦虑抑郁量表,对72例慢病组和59例正常对照组儿童的父亲和/或母亲的抑郁和焦虑情绪进行调查和比较,并收集患儿及父母基本信息,进行单因素和Logistic多元回归分析.结果 慢病组父母在焦虑(A分值)、抑郁(D分值)得分和总分(T分值)均显著高于正常对照组(P＜0.01);慢性病组儿童父亲和母亲医院焦虑抑郁量表评分比较其3个分值均无显著性差异(P＞0.05);多因素非条件Logistic回归分析显示:与父母医院焦虑抑郁量表得分相关联的变量为:患病年限(OR=1.339)、疾病状况(OR=1.494)和亲友帮助(OR=7.269).结论 慢性病儿童父母有更多的焦虑和抑郁情绪.在治疗患儿躯体疾病的同时,对慢性病患儿及家庭进行针对性的、有效的社会心理干预非常必要.     

慢性病儿童自我意识水平及相关因素

目的:探讨慢性病儿童的自我意识水平及相关因素。方法:采用P iers-Harris儿童自我意识量表(PHSCS)和少儿艾森克个性问卷(EPQ),对72例慢性病组和59例正常对照组儿童测试并比较,采用自编“基本情况调查表”,收集患儿个人基本情况、疾病情况、学校和社会活动情况、家庭及父母个人信息及健康状况等信息,并进行多元逐步回归分析。结果:慢病组儿童在行为、智力与学校情况、躯体外貌与属性、幸福与满足量表得分低于对照组,差异有统计学意义(P<0.01);在焦虑、合群分量表和总分两组间差异无统计学意义(P>0.05)。多元线性回归分析后得出:影响慢性病儿童PHSCS总分的因素由强到弱为疾病稳定情况、患儿课外活动和体育活动影响程度、EPQ中精神质(P)因子、患儿性别、患儿学校情况和患儿来源。结论:慢性病儿童有较消极的自我意识;疾病的严重和稳定程度,及其导致的学业和社会活动的影响是引起患病儿童自我意识水平高低的关键因素。因此,在治疗躯体疾病的同时,对慢性病患儿及家庭进行社会心理干预非常必要。     

Re-thinking family-centred care across the continuum of children's healthcare

BACKGROUND: The terms family-centred care (FCC) and family-centred services (FCS) are used interchangeably across the continuum of children's healthcare to encompass concepts of: parental participation in children's healthcare; partnership and collaboration between the healthcare team and parents in decision-making; family-friendly environments that normalize as much as possible family functioning within the healthcare setting; and care of family members as well as of children. However, authors from different professional and policy perspectives have used different definitions and literatures when arguing the evidence for FCC and FCS. METHOD: A critical literature review and theoretical discussion exploring common concepts and issues forming the basis for a research agenda further strengthening of the evidence base for FCC. A systematic identification of constructs, concepts and empirical indicators is developed and applied to exemplars in pain and asthma that span the continuum of children's healthcare across acute and community settings. CONCLUSIONS: The extent to which the concepts are supported by research and applied in practice remains unclear. We propose that re-thinking of FCC is required in order to develop a more coherent programme of research into the application of FCC theory in children's healthcare.     

Altruism: choices of healthy and chronically ill children

A substantial increase in the number of chronically-ill children in the United States during the past three decades has prompted researchers to investigate the negative consequences and outcomes of chronic illness. The current study attempted to identify strengths of chronically-ill children that may be related to the positive effects of living with the illness. Specifically, this study compared healthy and chronically-ill children's identification with altruistic behaviors and evaluated the experience of living with a chronic illness on children's altruistic choices.

A total of 74 children recruited from a public elementary school and a university hospital participated in this study. A drawing measure and a demographic questionnaire gathered information on the children's altruistic choices, previous hospitalizations, and chronic illnesses.

The results demonstrated that the children in this study made more altruistic choices than nonaltruistic choices. Altruistic choices were found to be significantly higher for girls and for older children. A significant difference was found between the altruistic choices of healthy and chronically-ill children. Finally, significant differences in altruistic choices were not found among chronically-ill children in this'study, whether in school or in the hospital. Recommendations for future research include determining other positive effects of living with a chronic illness, identifying additional methods of assessing altruism'in children, and determining changes over time in healthy and chronically-ill children's altruistic behavior.     

Exploring the unanticipated effects of multi-sectoral partnerships in chronic disease prevention

Multi-sectoral partnerships are important parts of many public health efforts to address chronic diseases, such as cancer, diabetes, and cardiovascular disease. Despite the potential value of multi-sectoral approaches, uncertainty exists regarding their effects on individuals, organizations, communities and populations. This article reports on a study that examined the unanticipated effects (both positive and negative) of the Public Health Agency of Canada’s (the Agency) Multi-sectoral Partnerships initiative, which supports more than 30 multi-sectoral partnership projects across Canada. Thirteen semi-structured interviews were conducted with staff from organizations participating in 3 diverse partnership projects as part of the Agency’s multi-sectoral partnerships initiative. Multiple unanticipated effects were identified and organized into 4 themes: (1) insights about the flexibility and responsiveness of government; (2) access to new and valuable resources (people, skills, expertise); (3) opportunity to build new capacities; and (4) understanding realistic timelines for partnership activities and outcomes. While these effects were unanticipated for study participants, they resonate with insights from the literature on multi-sectoral partnerships. These results raise a number of questions for consideration as partnership initiatives continue to evolve, including the types of training that partners might need; the individual and organizational capacities required for partnership approaches; and the evaluation techniques that might be most useful to capture the non-linear effects of partnership approaches.     

The family's functioning with chronic illness in the mother: the spouse's perspective

While previous research has studied the impact of chronic illness on the patient or spouse, the impact on the marriage, the child, the parent-child relationship, and the family's functioning have been relatively ignored. To date ther is no known study of the impact of a mother's chronic illness on the family. The purpose of the current exploratory study was to test a set of interrelated hypotheses about family functioning with the mother's chronic illness from the spouse's perspective based on a family systems perspective. Data were obtained from standardized questionnaires from 48 fathers with young school-age children whose wife had either breast cancer, diabetes, or fibrocystic breast disease. Results of a path analysis revealed that the number of illness demands the father experienced was a significant predictor of his level of depression. More demands resulted in higher depression scores. Marital adjustment was significantly affected by both the father's level of depression as well as by his wife's type of disease. Spouses of women with breast cancer had significantly higher levels of marital adjustment than did partners of the other women. More depressed spouses had lower levels of marital adjustment. Both illness demands and level of marital adjustment significantly predicted the type of coping behavior the family used. More frequent illness demands and higher levels of marital adjustment were associated with familial introspection, that is, coping behavior characterized by frequent feedback, reflection, and discussion in the family. The quality of the father-child relationship was significantly affected by this type of coping behavior. Families characterized as introspective had fathers who reported more frequent interchange with their children.(ABSTRACT TRUNCATED AT 250 WORDS)     

African American parents' experiences navigating breast cancer while caring for their children

African American parents who are navigating breast cancer while parenting their school-age children are an understudied population. We used family systems and sociocultural theories to conduct three focus groups with a total sample of 9 African American parents to understand how they cared for their school-age children (ages 11 to 18) while coping with the diagnosis and treatment of breast cancer. Our content analysis of these focus groups yielded themes that described a variety of ways they protected their children from the emotional consequences of breast cancer. Seven primary themes emerged: (a) increased desire to protect their children, (b) parental concerns for children's coping, (c) openness and transparency with children, (d) reliance on children for support, (e) calibration of their own responses, (f) use of the illness experience as a teachable moment for children, and (g) reliance on others for parenting support. Clinicians and researchers can improve their care by developing culturally sensitive family intervention programs that promote family resilience.     

Developmentally-based AIDS/HIV Education

A growing number of health and education professionals argue that AIDS/HIV education curricula should be developmentally-based. They suggest the principles of developmental psychology be used to design curricula based on the sequentially ordered ways children of different ages understand AIDS. Relying on findings of research on development of children's conceptions of illness, a specific developmentally-based approach to educating school-age children about AIDS/HIV is presented in this paper. For each of three major age groups, the paper describes general characteristics for children's thought processes, ways in which children assimilate information about various aspects of AIDS, and implications for educating children about causes, prevention, and fear of AIDS. The focus of AIDS/HIV education can move from reducing fear in the younger group, to identifying and differentiating causes and noncauses of AIDS in the intermediate groups, to articulating strategies for AIDS prevention in the older group.     

Heterosexual and mother-to-child transmission of AIDS in the hemophilia community.

Growing awareness of the potential modes of transmission of the human immunodeficiency virus (HIV) has encouraged interest in the epidemiology of infection among sexual partners and children of HIV-infected persons. The authors reviewed data on two groups, the first being those with HIV infection acquired heterosexually from a person whose hemophilia, or other chronic bleeding disorder, was treated with blood products. The second group was children with HIV infection acquired from a mother (vertical transmission) who either had been treated for a chronic bleeding disorder or had been the heterosexual partner of a person being treated. Surveillance data were examined for cases of acquired immunodeficiency syndrome (AIDS) in the United States reported to the Centers for Disease Control and Prevention, diagnosed before January 1, 1992, and for whom the only identified risk factor was being either the heterosexual partner or the child of a parent with a chronic bleeding disorder. Of the cases examined, 107 were in persons who were heterosexual partners of persons with chronic bleeding disorders. Of the 107, 98 (92 percent) were women and 87 (81 percent) were white; all were 17 years of age or older. In addition to the 107, there were 14 children, 10 (71 percent) of whom were diagnosed with AIDS in the first year of life. The rate of increase in such cases has not been as great in recent years as that observed early in the primary epidemic of AIDS among persons with hemophilia and other chronic bleeding disorders.(ABSTRACT TRUNCATED AT 250 WORDS)     

Utilizing role theory to help employed parents cope with children's chronic illness

Role theory is utilized to detail a six-step process for developing balanced coping through role negotiation. As applied in this paper, the role theory framework provides health educators with a useful tool for helping employed parents cope with a child's chronic illness. The emphasis is on partnering with parents or primary caregivers to identify, understand and manage the multiple role demands of working parents with chronically ill children. Role theory suggests ways health educators can support balanced coping by educating families about the demands of a child's illness, and helping to reduce those demands, helping to increase family resources, supporting parents and facilitating role negotiation. The ultimate goal is the development of balanced coping strategies that (1) meet the medical and emotional needs of the ill child, (2) allow parents to maintain their physical and mental health, and (3) enable parents to meet the demands of their other roles (e.g. paid employment).     

Personal strengths reported by people with chronic illness: A qualitative study

Background

Self‐management of chronic illness can be highly demanding and people need to mobilize their personal strengths to live well with their condition. More knowledge is needed about how people with chronic illness perceive and use their personal strengths as a basis for better integrating empowering person‐centred approaches into health care.

Objective

To explore what people with chronic illness describe as their strengths relevant to their health and well‐being.

Setting and Participants

Thirty‐nine participants (11 men) from 4 outpatient self‐management programmes were recruited to individual or group interviews. Participants included patients with chronic respiratory disease (n = 7), chronic pain (n = 18) and morbid obesity (n = 14). Interviews were analysed using content analysis.

Results

A number of personal strengths were reported and categorized into 3 domains: (i) Internal strengths, (ii) External strengths and (iii) Self‐management strategies. Internal strengths included being persistent, having a positive outlook, being kind and caring, experiencing positive emotions, being kind towards oneself, reconciling oneself with the situation, having courage and having knowledge and insight. External strengths included support from family, friends, peers and health‐care providers. Self‐management strategies included being active, planning and prioritizing, reducing stress, goal setting and seeking knowledge and help.

Discussion and Conclusion

The study provides insights into personal strengths as reported by people with chronic illness. The results complement prior findings on strengths in people with health challenges and can aid in incorporating person‐centred approaches into health care.     

Painful childhood: children living with juvenile arthritis

In this article the author explores the everyday life and coping of children living with juvenile arthritis. The author considered the children as experts on their illness who can give valuable insights into illness management from a patient's perspective. This is in contrast to most research, which lets others, such as caregivers, speak in the place of children. She used an ethnographic approach with open-ended interviews and participant observation to capture the complexity of chronic illness's impact on everyday life. Results of the study indicate that living with juvenile arthritis entails a constant taking control over one's body and achieving normality in life. These children must negotiate between their protected status of being a sick child and their immense responsibility in illness management. The author suggests that existing research on adult chronic illness has only limited relevance to understanding children's illness experience and that further research with children is needed.     

Normalization strategies of children with asthma

Despite understanding the physiologic effects of childhood asthma, less is known about how children perceive living with asthma. We undertook semistructured, in-depth interviews with 11 boys and 11 girls (all aged 11) drawn from a larger ongoing asthma study of Manitoba children born in 1995. All had asthma, as diagnosed by a pediatric allergist. We sought to further understand how children perceive asthma. Children spoke of feeling different and commonly used words such as "pain" and "hurt." We have categorized children's strategies to normalize their lives as (a) minimizing the health impact, (b) stressing normality, (c) emphasizing abilities, (d) making adaptations in daily living, and, (e) managing symptoms with medications. These findings suggest that aspects of other researchers' work regarding normalization efforts of children with various chronic diseases also apply in a chronic condition that is less obvious.     

Engagement in leisure and physical activities: analysing the biographical disruptions of a rare chronic disease in France

Using the biographical disruption literature, this article examines how the experience of illness – in this case, pemphigus – reconfigures engagement in leisure activities, and how these activities are integrated into the biographies of persons with a rare chronic illness. Among the changes imposed by the illness, leisure activities are especially enlightening, as they primarily depend on the body. The article is based on a study of 50 interviews of persons with pemphigus, a rare and chronic dermatological disorder. The ways in which they relate to leisure activities give a new perspective on biographical disruption. The first striking observation is how diverse they are: illness does not level social differences or lived experience, and can even further consolidate commitment to engagements. We identified four types of engagement in leisure activities: disengagement, which reveals biographical disruption; adapted engagement, leading individuals toward low-risk physical activities; engagement in medicalised normalisation; and salutary engagement.     

Decision-making in community-based paediatric physiotherapy: a qualitative study of children, parents and practitioners

Approaches to practice based on partnership and shared decision-making with patients are now widely recommended in health and social care settings, but less attention has been given to these recommendations in children's services, and to the decision-making experiences of non-medical practitioners and their patients or clients. This study explored children's, parents' and practitioners' accounts of shared decision-making in the context of community-based physiotherapy services for children with cerebral palsy. Semi-structured interviews were conducted with 11 children with cerebral palsy living in an inner city area of northern England, and with 12 of their parents. Two focus groups were conducted with 10 physiotherapy practitioners. Data were analysed using the constant comparative method. When asked explicitly about decision-making, parents, children and practitioners reported little or no involvement, and each party saw the other as having responsibility for decisions. However, when talking in more concrete terms about their experiences, each party did report some involvement in decision-making. Practitioners' accounts focused on their responsibility for making decisions about resource allocation, and thereby, about the usefulness and intensity of interventions. Parents indicated that these practitioner-led decisions were sometimes in conflict with their aspirations for their child. Parents and children appeared to have most involvement in decisions about the acceptability and implementation of interventions. Children's involvement was more limited than parents'. While parents could legitimately curtail unacceptable interventions, children were mostly restricted to negotiating about how interventions were implemented. In these accounts the involvement of each party varied with the type of issue being decided and decision-making appeared more unilateral than shared. In advocating shared decision-making, greater understanding of its weaknesses as well as its strengths, and greater clarity about the domains that are suitable for a shared decision-making approach and the roles of different parties, would seem a helpful step.     

Victims of chronic dating violence: How women's vulnerabilities link to their decisions to stay*

Abstract: This article describes relational and situational vulnerabilities that emerged from interviews with 28 women (7 Black and 21 White) who were victims of chronic abuse suffered at the hands of male dating partners. Based on a qualitative content analysis, we explore how these vulnerabilities relate to women's decisions to stay in their abusive relationships and consider the implications of racial differences that emerged. Prevention and intervention strategies that help women see themselves as active choice makers are discussed.