Cancer symptom transition periods of children and families

BACKGROUND: Children with cancer are reported to experience many symptoms during the cancer trajectory. However, minimal qualitative research has been conducted that explores children's and families' experiences of symptoms. An understanding of the symptom trajectory, grounded in children's and families' experiences, is essential to providing comprehensive and sensitive care to children with cancer and their families. AIM: This paper reports a study designed to explore and describe the symptom course in childhood cancer as experienced by children and their families. DESIGN: Guided by the philosophy of interpretive interactionism, a longitudinal qualitative study was undertaken. A purposive sample of 39 families of children with cancer who resided in Western Canada participated. The children ranged in age from 4.5 to 18 years and varied in their cancer diagnoses. METHODS: Multiple data collection methods included formal and informal interviewing and participant observation. Data were analysed by the constant comparative method. Development of illness narratives added to an understanding of children's and families' experiences. FINDINGS: A substantive theory entitled 'Children's and Families' Lived Experience of Childhood Cancer Symptoms' emerged from the findings. This depicts the experience of cancer in relation to children's changing symptom trajectory. A core category of the theory, 'passage through the transition periods', shows how changing symptom experiences affected children's and families' ways of being in the world. These were reflected in six transition periods: (1) it is just the flu; (2) it is more than the flu; (3) it hits home; (4) it is nasty; (5) it is not so bad, it is pretty good; and (6) it is 'dragsville'. The changing roles and responsibilities of family members, and how the family existed in the cancer world, varied depending on the transition period through which they were passing. CONCLUSIONS: Transition periods not only reinforce the dynamic nature of the experience of childhood cancer but, more importantly, show how symptoms can greatly affect the quality of children's and families' day-to-day living. Interpreting cancer in the context of the symptom trajectory provides nurses with a new perspective for understanding childhood cancer, and will assist in the development of symptom relief strategies that will help to contain symptoms and improve overall quality of life for children and families.     

“Nothing is carved in stone!”: uncertainty in children with cancer and their families

Although more children are surviving childhood cancer, they and their families still face many new stressors and challenges. Understanding the experiences of childhood cancer in children and families is conditional upon building a sound and comprehensive knowledge base that is grounded in research. Accordingly, a longitudinal interpretive qualitative study was conducted to arrive at an understanding of children's and families' perspectives on having to experience the childhood cancer-symptom trajectory. A purposive sample of 39 children with cancer and their families were recruited into the study. Open-ended interviews and participant observation were the primary data collection methods. Data were analyzed by the constant comparative method of grounded theory and analysis of illness narratives. Findings revealed that in addition to the stress and suffering resulting from the children's multiple symptom experiences, children and their families experienced many other events or 'rough spots' that made cancer and life difficult to get through. Although the 'rough spots' were numerous and varied, they all resulted in children and their families experiencing feelings of uncertainty. This paper focuses on describing the nature of uncertainty experienced by the children with cancer and their families. Recommendations for nursing practice and research are discussed.     

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.     

School-age children with asthma and their parents: relationships with health care providers

Health care providers, including nurses, physicians, and other personnel, are key figures who design and implement plans of care to help families manage childhood asthma, yet families' perceptions of relationships with these professionals has received limited study. Child and parent perspectives about relationships with their health care providers emerged as themes in a study that explored responsibility sharing between school-age children with asthma and their parents (Buford, 2004). Fourteen school-age children with asthma and 14 of their parents from 11 families participated in the study. Parents and, to a lesser extent, children, described aspects of their relationships with their health care providers that were supports or barriers to asthma management. Implications for nurses and other health care providers stem from these data and include the importance for health care providers to educate themselves and their patients about state-of-the-art asthma care. Education should be directed to both parents and their children. In addition, parents need to receive education about how to coach their children because the children depend on them for information and direction. Finally, nurses and other health care providers need to listen to parents and value their input about their children's conditions.     

Supportive and palliative care needs of families of children who die from cancer: an Australian study

OBJECTIVE: To obtain feedback from parents of children who died from cancer about their understanding of palliative care, their experiences of palliative and supportive care received during their child's illness, and their palliative and supportive care needs. DESIGN: A qualitative study with semi-structured interviews. PARTICIPANTS: 24 parents from Perth (n = 10), Melbourne (n = 5), Brisbane (n = 5) and Sydney (n = 4). Setting: Five Australian tertiary paediatric oncology centres. Results Parents whose children died from cancer live within a context of chronic uncertainty and apprehension. Parents construed palliative care negatively as an independent process at the end of their children's lives rather than as a component of a wider and continuous process where children and their families are offered both curative and palliative care throughout the cancer trajectory. The concept of palliative care was perceived to be misunderstood by key health professionals involved in the care of the child and family. The importance and therapeutic value of authentic and honest relationships between health professionals and parents, and between health professionals and children were highlighted as a critical aspect of care. Also highlighted was the need to include children and adolescents in decision making, and for the delivery of compassionate end-of-life care that is sensitive to the developmental needs of the children, their parents and siblings. CONCLUSIONS: There is a need for health professionals to better understand the concept of palliative care, and factors that contribute to honest, open, authentic and therapeutic relationships of those concerned in the care of the dying child. This will facilitate a better understanding by both parents and their children with cancer, and acceptance of the integration of palliative and supportive care in routine cancer care.     

Kicking Eeyore into touch:'living-strong','nursing-strong' and being appreciative and solution-focused

The potential benefits of moving away from a problem/needs oriented approach to a solution-focused, appreciative way of working with children and their families are explored in this paper. It aims to acknowledge and celebrate the expertise of children and their families and the nurses who care for and with them. I draw on both Appreciative Inquiry - a dynamic, dialogic framework for appreciative thinking with people about situations and settings - and Solution-Focused Nursing as means of underpinning my proposal to further shift the way that children's nurses think and work with children and their families and genuinely consider the families' expertise and knowledge. This requires us to be attuned to the diverse ways of experiencing things and multiple ways in which nurses can care with families. It requires us to carefully consider not only what we say but how we say it and the impact that our dialogue with children has on them. Equally it requires children's nurses to acknowledge and celebrate what they do well and embrace and engage with the energy and creativity that underpins strong, resourceful, innovative and expert practice. I propose a manifesto for children's nurses that acknowledges these attributes and encourages us to 'think solutions', to be nurses that children will remember who help children and families to live well and live-strong with their illness.     

Anxiety and postoperative pain in children who undergo major orthopedic surgery.

Anxiety and pain are major concerns not only for children who undergo surgery, but also for their parents and health care professionals. A convenience sample of 74 adolescents who underwent major orthopedic surgery for repair of idiopathic scoliosis and their parents was used to investigate the relationships among children's and parents' preoperative and postoperative anxiety and children's postoperative pain. Age-appropriate versions of Spielberger's State-Anxiety scales measured children's and parents' anxiety, and a visual analog scale assessed children's pain intensities. Children's state anxiety increased from preoperative to postoperative levels, and their postoperative anxiety levels positively related to their pain intensities on days 2 and 4 following the operation. Parents' anxiety decreased from preoperative to postoperative levels, and their postoperative anxiety positively related to their children's postoperative anxiety. Studying both parents and children helped to explain the variance in children's self-reported anxiety. Parents' emotional states are important indicators of children's emotional states and, subsequently, their pain experience. The results of this study suggest that allowing children to assist in the assessment of their postoperative pain may help health care professionals better understand the subjective component of pain. The findings also emphasize the importance of including parents in future studies in which the aim is to understand children's behavioral responses and recovery outcomes.     

Families discovering asthma in their high-risk infants and toddlers with severe persistent disease

Interpretive phenomenology was used to discover the earliest experiences of families of children younger than 4 years hospitalized for severe persistent asthma. The children who were African American or Latino and living in poverty were at highest risk of morbidity and mortality. Three families with distinctly varied responses to early symptoms were chosen from an investigation of 11 families for this study. Each gave three home interviews and participated in home observations. All families experienced life-changing responses to their children's distressed breathing. All had experienced asthma in themselves or others that shaped their beliefs and management patterns. Family experiences prior to and following diagnosis are discussed. Findings suggest that understanding these experiences and respecting families' earliest responses will help clarify established family management patterns for severe asthma in infants and toddlers and will enhance the ability of providers to guide the care of these families and children.     

直立不耐受患儿生活质量及其家庭影响因素分析

目的了解直立不耐受患儿生活质量现状,分析影响生活质量的家庭因素。方法以74例确诊的直立不耐受患儿作为病例组,74例与患儿人口统计学资料相匹配的健康儿童作为对照组,采用一般情况调查表、焦虑自评量表、家庭关怀度指数问卷以及儿少主观生活质量问卷等工具,对两组儿童及家长进行调查与访谈。结果直立不耐受患儿生活质量总体满意度得分(62.39±14.82分)显著低于对照组儿童(72.49±17.31分)(t=-3.811,P<0.01)。单因素分析表明,患儿的父母教养方式、家庭关系与家庭功能是影响其生活质量的主要家庭因素。结论直立不耐受患儿生活质量低于健康儿童,家庭因素是其重要影响因素。提示医护人员应关注患儿的生活质量及其家庭环境的影响与作用。     

Use of Computer Technology to Enhance Immigrant Families'' Adaptation

PURPOSE: To summarize how computer technology influenced immigrant families' adaptation to life in the United States. DESIGN: Critical ethnography. METHODS: Data were collected from 1998 to 2000 from 13 parents and 16 children from nine Taiwanese immigrant families using semi-structured interviews and a questionnaire. Narrative analysis was used with interview data. FINDINGS: Participants faced the demands of language proficiency, economic survival, loss of social networks, and social disconnection during resettlement. Computer technology provided participants with new occupational opportunities and strategies to overcome the barriers and stress created by resettlement. Internet and E-mail access greatly facilitated these participant families' adaptation. CONCLUSIONS: Study findings warrant further exploration to assess bow new computer technology promotes immigrant families' adaptation and alleviates stress associated with resettlement, including information about their health and health care.     

Working with families experiencing violence: the Ploeger Model of enhanced maternal and child health nursing practice

This paper describes the Ploeger Model of enhanced maternal and child health (EMCHN) nursing practice that has been operationalised since 1997. These EMCHNs work with families whose infants and children are exposed to violence. Family violence is complex and many layered. It presents a situation of fear and unpredictability that is difficult to identify and manage. If this situation continues during the child rearing years the effect on the health and wellbeing of infants and children may range from death to life long disabilities. Maternal, siblings and families' health and wellbeing can also be impacted upon for life. The need for enhanced skills for identifying and supporting vulnerable families and safeguarding children at risk has been highlighted by the Department of Health (2004). The Ploeger Model provides an example of early identification and intervention using both secondary and tertiary prevention strategies to identify and make referrals within a multidisciplinary, collaborative partnership, and a process of mutual clinical supervision. Another feature of the model is 'assertive outreach', which assists with early engagement with the family focusing on social support. Each of these helps achieve positive outcomes for children and their families. Such front line professionals must have the knowledge, skills, time and management support to work effectively with these families.     

Childhood cancer: siblings draw and tell

There is a growing awareness among health care professionals that the psychosocial needs of siblings of children with cancer are less adequately met than those of other family members. As part of a larger research study of 17 families of children with cancer, 20 healthy siblings, ages 3-11 years (7 males, 13 females), were tested using the Kinetic Family Drawing-Revised (Spinetta, McLaren, Fox, & Sparta, 1981) in one of two oncology clinics in a Southwestern state. Nine of the subjects participated in a sibling day. Data from the drawings and discussions with siblings confirm previous sibling research findings and reflect current social changes.     

Health professionals' perspectives of suicide in Taiwan

The ethnographic study on which this report is based investigated experiences among patients, their families, friends, colleagues, and health professionals following a suicide attempt. Misunderstanding and ineffective treatment are often based on different explanations of suicide held by patients, their families, and health professionals, even when they share culture and language. In this report we describe how suicide is perceived by psychiatric team members in one regional teaching hospital in northern Taiwan. Twenty-two staff members of the Department of Psychiatry participated in this study. "Making a diagnosis" characterized the psychiatric subculture around the care of suicidal patients. In addition, mental health professionals tended to differentiate the patient's condition through three main avenues: (a) psychotic symptoms versus personality problems, (b) low IQ and high educational level, and (c) high versus low lethality of method. These findings suggest that mental health professionals need to bridge the gap between their knowledge and understanding of suicide and patients' and patients' families' expectations for care and treatment.     

白血病患儿母亲心理历程的质性研究

目的了解白血病患儿的母亲在陪伴子女诊断、治疗、康复过程中的真实心理感受,为临床护理人员对患儿家属进行心理支持提供借鉴.方法通过访谈形式,访问了16位白血病患儿的母亲,将获得的资料进行分析、整理,提出主题.结果患儿的母亲在子女患有恶性肿瘤过程中承受着巨大的心理压力和经济压力,表现过程为初诊时的震惊、困惑、拒绝,逐渐转变成无奈接受,对未来持悲观心理.支持系统主要来自母爱天性、丈夫和家人以及其他白血病患儿家长.结论白血病患儿母亲需要深切人文关怀和情感支持,护理人员应采取个性化的护理措施,帮助、指导患儿及其母亲提高生活质量,度过这一艰辛历程.     

Major stressors and their effects on the well-being of children with cancer

An in-depth exploratory study identified major stressors experienced by children diagnosed with cancer. Four themes were used to analyze data from a series of focus group discussions and individual interviews with children, parents, hospital professionals, and hospital teachers (N = 35). First, major stressful events were reported by the children, their parents, and hospital professionals. Second, the effects of major stressors on the well-being of the children, their families, school, and hospital personnel were determined. Third, the children reported the consequences of major stressors on their physical and emotional well-being. Fourth, the children's use of effective coping mechanisms was determined. The results revealed that the major stressors for children with cancer were treatment procedures (e.g., chemotherapy), loss of control, the hospital environment, relapses, and fear of dying. In addition, the children cited body image issues, ongoing lack of self-esteem, and issues relating to the preparation for transition back into real world situations (e.g., school).     

Healthy Start: improving maternal, infant and child health

Maternal health during pregnancy and children's nutrition in their early years can affect their future health. This article explains how health professionals can promote the health of future generations by informing low-income, vulnerable and excluded families about the government's Healthy Start scheme and by encouraging breastfeeding and sharing information on how mothers, infants and children can have a healthy diet and lifestyle.     

Minor illness in children: parents' views and use of health services

Consultation rates in young children are high, and parents and carers of young children have reported feeling disempowered and anxious when their children display common symptoms. Parents have stated that more information would help them manage these symptoms appropriately. This focus group study explored how parents and carers of young children feel when their child displays common symptoms, what information they need to assist them in appropriate management, and to determine if they would value an educational intervention on the management of common symptoms. Findings showed that many parents sought help from families and friends following negative experiences of seeking advice from health professionals and many were wary of the information presented in health information leaflets produced by pharmaceutical companies. Parents and carers who took part in this study stated that they would value an educational intervention that would help them to appropriately manage common symptoms. They wanted to receive the information through interactive group sessions, led by a health visitor, with the inclusion of simple and non-product biased "take home" materials.     

How social myths about childhood, motherhood and medicine affect the detection of subtle developmental problems in young children

Focus by child health professionals on the well-being of young Australian children and their families has intensified in the past decade, with particular attention drawn to the importance of the early detection and intervention of developmental problems. While many children with developmental difficulties are detected in the preschool years, those with more subtle forms of developmental problems are often only noticed by their mothers, passing unnoticed by professionals until the children begin school and fail socially or academically. This study aimed to ascertain ways in which child health professionals may utilise the experience of mothers to improve early recognition and diagnosis of subtle developmental and behavioural problems in children. French philosopher, Roland Barthes (1973) proposed that myths play an important social role in defining underlying social values that affect how people interpret what others say or do. This paper explores how the social myths of childhood, motherhood and medicine impact upon the early detection of children with subtle developmental problems. In particular, it examines how social myths affect when and how mothers become concerned about their children's development, from whom they seek advice, and the responses which mothers receive in regard to their concerns. Mythical notions of the 'blameless child', 'boys will be boys' and 'children who look OK are OK', and the constituted myth of motherhood, are all shown to affect when mothers become concerned about their children's development. What mothers do about their concerns and the responses they receive from child health professionals are also influenced by these myths. The myth of medicine is also examined to determine how it affects communication between mothers and doctors, the roles and responsibilities of doctors, and the value placed on a mother's concerns by doctors.