Child in hospital: family experiences and expectations of how nurses can promote family health

Aims and objectives. This study set out to explore, from the family's point of view, ways in which nursing staff can promote family health during the child's hospital stay. Background. Having a child in hospital is a major source of stress and anxiety for the whole family. Earlier studies have described parental coping strategies, ways to strengthen those strategies and to support parental participation in child care, but no one has studied the promotion of family health during the child's hospitalization from the family's point of view. Design. Interviews were conducted in 2002 with 29 families who had a child with a chronic illness which were receiving or had received treatment on the paediatric wards of two Finnish hospitals. Methods. Data analysis was based on the grounded theory method, proceeding to the stage of axial coding. Data collection and analysis phases proceeded simultaneously. Results. Five domains were distinguished in the promotion of family health: (1) reinforcing parenthood, (2) looking after the child's welfare, (3) sharing the emotional burden, (4) supporting everyday coping and (5) creating a confidential care relationship. Conclusions. The results strengthen the knowledge base of family nursing by showing how nursing staff can promote family health during the child's hospital stay. Relevance to clinical practice. The results have a number of practical applications for nursing, both for clinical practice and research. The results can be used in paediatric hospital wards caring for chronically ill children and their families. The five domains of family health promotion described here should be tested in other paediatric wards and in other geographical locations.     

Family stress,perceived social support and coping following the diagnosis of a child's congenital heart disease

BACKGROUND: Congenital heart disease (CHD) is now estimated to be the second most prevalent chronic illness. A child's chronic illness may have effects that have pervasive consequences for family life. Recently, attention has focused on resiliency variables, especially social support and coping strategy, regulating the impact of stress. In the resiliency model of family stress, adjustment and adaptation, social support is viewed as one of the primary moderators or mediators between stress and well-being. AIMS: The purpose of this study was to explore the relationships of family stress, perceived social support, and coping and determine the resiliency factor associated with coping by families who have a child with chronic illness. DESIGN: In a secondary analysis of a large longitudinal study, the sample consisted of 92 families who had a child under age 12 who was newly diagnosed with CHD within the last 3-4 months. FINDINGS: Results from regression analysis revealed that perceived social support operated as a resiliency factor between family stress and both parental and family coping. Child and family characteristics appeared to be the important predictors of perceived social support and parental coping. Although perceived social support appeared to be an important predictor of parental and family coping, neither the moderating nor mediating model was supported in full but partial causal relations were confirmed. CONCLUSIONS: Findings provided evidence for the theoretical and empirical significance of perceived social support as a predictor of family coping. Further, these findings suggest that perceived social support is a factor influencing the resiliency of relatively high-risk groups of families who have a child with chronic illness.     

Promoting health for families of children with chronic conditions

AIM: This paper reports a study whose aim was to describe how nurses in a paediatric unit promote the health of families of children with chronic conditions during the children's hospitalization. BACKGROUND: It is stressful for a family when a child has a chronic condition and hospitalized. Nurses have the opportunity to promote family health while a child is hospitalized, and previous studies contain a wealth of recommendations on how this should be done. However, there is little research evidence about family care and how nurses promote the health of a family with a chronically ill child. METHODS: Forty nurses who worked in two paediatric units providing care for children with chronic conditions and their families participated in the study. Data were collected in two Finnish hospitals in 2002 using group interviews, and nursing actions were observed in both units for a period of 84 hours. Data analysis was based on the grounded theory method, proceeding to the stage of axial coding. Data were collected until theoretical saturation was reached. FINDINGS: Family care was based on three distinctive strategies. Nurses used a systematic, selective or situation-specific strategy while promoting family health during a child's hospitalization. CONCLUSIONS: The findings indicate that nurses used different strategies while promoting family health during a child's hospitalization. The systematic way of working with families identified in the study seems a useful strategy. All three strategies of family nursing described here should be tested in other paediatric wards and in other geographical locations.     

Concerns of Parents With Children Receiving Home-Based Pediatric Palliative Care

ContextCaring for a child who will die from a life-limiting illness is one of the most difficult experiences a parent may face. Pediatric palliative care (PPC) has grown as a specialty service to address the unique needs of children and families with serious illness. However, gaps remain between the needs of families in PPC and the support received.ObjectivesThe objective of this study was to explore the concerns of parents who have a child in home-based PPC.MethodsSemistructured interviews were conducted with 25 mothers and 10 fathers from 25 families shortly after their child's referral to home-based PPC. Children (57% male, M_age = 10.5 years, SD = 3.95, range = 4–18 years) had a range of diagnoses. Data were analyzed using inductive content analysis.ResultsParents' concerns clustered into four main themes: 1) ensuring that their child's remaining days were spent living well physically, emotionally, and socially; 2) uncertainty regarding their child's diagnosis, prognosis, and treatments; 3) their child's death (e.g., the process of dying and when it will occur); and 4) the family, including the impact of the child's illness and death on siblings and wanting to cherish as much time together with family as possible.ConclusionParents of children receiving home-based PPC expressed concerns across a range of domains, both about their seriously ill child and the broader family. These results highlight salient worries among parents of children in PPC and point to critical areas for intervention for seriously ill children and the broader family.     

Parental experience of family resources in single-parent families having a child with cancer

Aim. The purpose of this study was to explore the essence of family experiences in terms of family resources and how these assist a single‐parent caring for a child with cancer. Background. When families face stresses caused by cancer, they need to readjust their roles, interactive patterns and relationships, both inside and outside the family. During the adaptation process, family resources may assist recovery from stress and a return to equilibrium. Most research has emphasised the support resources available to two‐parent families during the treatment process. There is a lack of information on the experiences of single‐parent families and their available resources together with the functions and roles played by family resources during the adjustment process. Design. Qualitative. Results. Five major themes were identified: (i) facing the disease with courage; (ii) hope kindled by professionals; (iii) constructing parental role ability; (iv) assisting the children to live with the illness; and (v) family flexibility. Conclusion. The results of the current study demonstrate that single‐parent families with a child suffering from cancer employ family resources to assist family adjustment and to maintain family function/equilibrium. These results explain the dynamic interactions between the multiple levels of resources available to the family. Relevance to clinical practice. The study results provide evidence‐based information that identifies the nature of family resources in single‐parent families and describes how these resources can be applied to assist the families.     

Potential for alterations in family process: when a family has a child with cystic fibrosis

Cystic fibrosis (CF) is a disease that has profound consequences on a family unit. As a genetically transmitted, chronic illness, it influences every aspect of family life, including time constraints, finances, and relationships among family members. The purpose of this article is to demonstrate the cumulative effect of the nursing diagnoses related to the pathophysiology of CF on the nursing diagnosis, Potential for Alterations in Family Process, when a family has a child with cystic fibrosis. This nursing diagnosis was first recognized by the North American Nursing Diagnosis Association (NANDA) in 1982. It is vital that nurses are able to differentiate between a family having difficulty coping with a child with CF in the home, and one that is coping well on its own. The children of families that are not coping well tend to be hospitalized more than those of families that are coping well. The families use the hospitalizations as rest periods for themselves. By recognizing the cues identified by NANDA of a family having problems, early intervention can be initiated before the family is in a crisis. The family must live with CF on a daily basis for the remainder of the child's life; therefore it must be able to function at its optimum level. It is nursing's responsibility to be able to recognize and assist the family in need. A knowledge of the nursing diagnosis, Alterations in Family Process, will assist nurses in fulfilling this obligation to the family.     

Chronic illness: the importance of support for families caring for a child with cystic fibrosis

• ? The effect of chronic life-threatening illness on the family is one of the major problems confronting the health-care system today. Increasingly, parents have the major responsibility for the daily management of their child's condition.
• ? There is evidence that many parents lack the pofessional help and support which could ameliorate some of their problems. It is important that nurses have an understanding of how families cope with the burden of caring for a chronically ill child.
• ? Health professionals need clear guidelines on how to support these families in their role as primary care-givers.
• ? This paper examines how families of children with cystic fibrosis adapt to the illness in order to provide indicators for nursing practice and to enhance the care and support provided for these families.
• ? Effective coping strategies include: assigning meaning to the illness, sharing the burden, denial of diagnosis and incorporating therapy in a schedule.

     

Well siblings of children with chronic illness: A synthesis research study

Well siblings of chronically ill children experience family disruptions that profoundly affect them. Previous research focusing on well siblings’ experiences has often produced inconsistent findings, likely the result of varying study designs and samples. The purposes of this synthesis research study were twofold: (a) to assess the applicability of existing grounded theory of sibling response to a child's cancer to a wider range of childhood conditions; and (b) to refine the existing theory to reflect the experiences of the broader sample. Data for the synthesis came from a National Institute of Nursing Research‐funded mixed‐methods synthesis examining the intersection of childhood chronic illness and family life. The current analysis was based on well sibling results extracted from 78 research reports published between 2000 and 2014. An existing grounded theory, Creating a Tenuous Balance (CTB), was discovered at the outset of analysis and used as the primary framework for coding and synthesizing results. The focus of most studies was siblings’ responses to 14 chronic conditions, with cancer being the most often studied. Results reflected siblings’ perspectives of their experiences as well as perspectives of parents and the ill child. The analysis substantiated all four patterns of sibling behavior included in CTB, with the patterns of adapting to changes in personal and family life, and handling strong emotions being especially challenging aspects of the sibling experience. Moreover, the results expanded several aspects of CTB. The analysis provided evidence of the applicability of the theory to a varied group of chronic conditions and enabled us to identify important areas for developing interventions to support siblings.     

Social competence of school-aged children with chronic illnesses.

This study examines social competence among 67 chronically ill children, aged 7 to 14 years, whose families participated in a grounded theory study of how families define and manage a child's chronic illness. Child Behavior Check List ratings (Achenbach & Edelbrock, 1983) by both fathers and mothers indicated a significantly greater risk for social competence difficulties among the chronically ill children as compared with the normative sample. Case vignettes, drawn from extensive interviews with family members, are used to show contrasting styles of family management and child coping and to suggest nursing interventions aimed at fostering social competence.     

A Family-Focused Perspective on Chronic Illness

The care of the chronically ill traditionally has focused on the individual who has the illness. Nursing has always emphasized including the family in care, but very few protocols dealing with chronic illness focus on the family as the unit of care. In this article, the author presents a new approach to the care of families affected by chronic illness, applying concepts of the family health system (Anderson & Tomlinson, 1992) to chronic illness. The protocol described, which includes nursing assessments and interventions, groups areas of family experience into five types of processes: interactive, developmental, coping, integrity, and health processes. The protocol presented is an example of an innovative, holistic, family-focused perspective on the care of those with chronic illness.     

Children's adaptation to insulin dependent diabetes mellitus: a critical review of the literature

A preventive health care context is important in managing children with insulin dependent diabetes mellitus (IDDM). Specific risk factors can make adaptation to IDDM more difficult. These include older age, female gender, family stress, and non-intact family structure. Factors which enhance child adaptation, also called resistance factors, include family cohesion and adaptability, positive coping strategies, younger age, and social support. Children having a chronic illness face many challenges, including changes in lifestyle, such as regimented scheduling of everyday life, readjustment of roles in the family, and potential activity alterations. An important role of health care professionals is to guide and counsel both children who are newly diagnosed with a chronic illness and their families about ways to normalize their lives as much as possible, even while realizing that their lives will never be the same as before diagnosis. Throughout the course of an illness, children and families rely on nurses to provide information about health promotion and illness management. Nurses coordinating the care of children adapting to insulin dependent diabetes mellitus (IDDM) must recognize the significance the diagnosis has on the child. Furthermore, identification of those factors that place the child at risk for poor adaptation is critical so that the nurse can assist with the process of adaptation and recruit other psychological or social support resources as early as possible.     

Concept development of family resilience: a study of Korean families with a chronically ill child

Aims. To clarify and delineate the concept of family resilience in the context of the chronic illness of a child. This study also investigated the concept of family resilience in relation to family functioning in order to compare and contrast family resilience and family functioning. Design and method. Three phases of the hybrid model of concept development were applied: theoretical, fieldwork and final analytical. In the theoretical phase, a working definition of family resilience was developed by a literature review. The fieldwork phase comprised in‐depth interviews with 11 parents with a chronically ill child, in the paediatric oncology unit of a university hospital in South Korea. The qualitative data obtained from the interviews were analysed to find attributes of family resilience. The final analytical phase compared and interpreted the findings from the theoretical and fieldwork phases in order to clarify and refine the concept of resilience. Results. The definition of family resilience was of an enduring force that leads a family to change its functioning dynamics in order to solve problems encountered. Twenty‐one conceptual attributes of family resilience emerging from this study were differentiated into four dimensions: (i) intrinsic family characteristics, (ii) family member orientation related to family characteristics, (iii) responsiveness to stress and (iv) external orientation. Conclusions. Family resilience is an enduring force that leads a family to change its dynamics of functioning in order to solve problems associated with stresses encountered. This conceptualization led to the development of a model of family coping that incorporates both family resilience and family functioning, as the property and as the process of change, respectively. Relevance to clinical practice. In order to build a family that functions better under stress, it is necessary for nurses to focus more attention on family resilience, especially in terms of the development of intervention strategies to strengthen family resilience.     

Research Article: Empowerment process for families rearing children with developmental disorders in Japan

The understanding of developmental disorders and the support that is offered to families rearing a child with developmental disorders always have been limited in Japan. To clarify the empowerment process for families rearing a child with developmental disorders, we interviewed 20 mothers of children who lived in the wider Tokyo area, Japan. To analyze the data, we adopted the modified grounded theory approach. The results identified three stages in the empowerment process: confusion over caring for the child, confrontation with the child with the disorder, and expectations of a valuable life for the child. The empowerment process showed step‐by‐step progress: families that were originally ill‐equipped to deal with their child's disorders were able to deal with them in collaboration with professionals through approaching the local administration and were able to shift their stance on child‐rearing along with their child's growth. To promote the family empowerment process, cross‐jurisdictional and cross‐occupational collaboration among local care teams is needed. The members of the teams should understand the experiences and feelings of the families that are rearing children with developmental disorders in the context of the family's empowerment process.     

Face to Face With Sturge-Weber Syndrome

issues and purpose . Chronic illness is a way of life for parents of children with Sturge-Weber syndrome (SWS), a rare progressive congenital disease that has as its defining feature a port wine stain. This case study describes the experience of one family living with a child with SWS.
conclusions . This family's struggle with a devastating syndrome and the ways in which they coped and maintained hope inform all those who care for families living with a chronically ill, disabled child.
practice implications . Social support is critical for families facing overwhelming care needs. Families also need anticipatory guidance about child rearing, developmental milestones, decision making, and coping strategies. Additionally, families may need help in mobilizing professional and family resources and in effectively using available services.     

Maternal experiences making a decision about heart surgery for their young children with congenital heart disease

Aim. The aim of this study was to investigate the essence of the experience of mothers during the decision‐making process when facing their less than three‐year‐old child undergoing heart surgery due to congenital heart disease (CHD). Methods. In this phenomenological study in Taiwan nine mothers were interviewed in their homes. They were invited to share their experience of family interactions and relationships while facing a decision about their child's heart surgery. The interviews were recorded and transcribed for further analysis according to Colaizzi's phenomenological methodology. Results. The essence of the maternal experience themes during the decision‐making process included (i) understanding the surgery step by step, (ii) role pressure, (iii) constructing care‐taking ability, (iv) endeavouring to maintain family functioning while preparing for surgery and (v) deliberate consideration to make the correct decision. Conclusions. When parents face their child having CHD and plan heart surgery, the whole family is living through a stressful decision‐making process. According to the results of this study, it is obvious that the caregivers and their whole families experience psychological distress, role reorganization and remodelling of family functioning. Relevance to clinical practice. The results of this study provide evidence‐based essential knowledge that will assist the management of such decision‐making processes and help to prepare the child and the family to have confidence in the heart surgery.     

The COPE program: a strategy to improve outcomes of critically ill young children and their parents

Critically ill young children and their parents are subjected to multiple stressors during hospitalization, which may predispose them to short- and long-term negative outcomes. Nurses who care for children who are critically ill and their families during and following their intensive care unit stay must be knowledgeable of the impact of a child's critical illness on the family and factors influencing adjustment to the stressful experience. Knowledge of these issues is essential in planning effective intervention strategies to enhance coping outcomes in this population. This article (a) discusses how young children and their parents are affected by critical illness; (b) outlines major sources of stress for families; (c) identifies factors influencing coping outcomes; and (d) describes the COPE program, a newly devised early intervention program for critically ill young children and their parents.     

Living a normal life in an extraordinary way: A systematic review investigating experiences of families of young people's transition into adulthood when affected by a genetic and chronic childhood condition

IntroductionThe transition into adulthood is a developmental stage within the life cycle. A chronic childhood condition can disrupt this transition and create major challenges for both the young person and his or her family. Little is known about families’ experiences when living with a rare genetic disease. Therefore, the purpose of this literature review was to understand experiences of families living with a chronic childhood disease during transition into adulthood by integrating evidence.MethodA systematic review using an integrative approach to data inclusion and analysis comprising qualitative, quantitative and other methodological studies about a range of genetic and chronic childhood diseases was undertaken to identify relevant information. Databases searched were PubMed, Cochrane Library, PsychINFO, CINAHL, and AMED, using the search terms (1) family, caregivers, young adult, adolescent; (2) adolescent development, transitional programs, transition to adult care; (3) muscular dystrophy, spinal muscular atrophy, cystic fibrosis, haemophilia and sickle cell disease. Study findings were critically appraised and analyzed using critical interpretive synthesis.ResultsA total of 8116 citations were retrieved. 33 studies remained following the removal of duplicates, papers unrelated to genetic childhood conditions and families’ experiences of the transition into adulthood. Findings provided three perspectives: (1) the young person's perspective on how to “live a normal life in an extraordinary way” and “manage a chronic and life threatening disease”; (2) the parent perspective on the “complexity of being a parent of a chronically ill child” and “concerns about the child's future” and (3) the sibling perspective on “concerns about the siblings future”.As a consequence of the genetic childhood condition, during the ill family members’ transition into adulthood all family members were at risk for psychosocial difficulties as they mutually influenced each other. Previous research focused predominately on the individual illness experience, and less emphasis was put on the family perspective.ConclusionsYoung people and their family members experienced multiple challenges and not only for the ill individual but also there were consequences and health risks for the whole family system. Therefore, a family systems perspective to research and care is indicated to assist affected families to cope with their complex life and health situation.     

Acute illnesses in children: A description and analysis of the cumulative incidence proportion

Objectives - To describe parent-reported morbidity in relation to die psycho-social conditions of the families and to characterize families whose children are frequently ill.

Design - The parent-reported morbidity in a two-month prospective period, and the psychosocial conditions of the families were registered by means of a questionnaire. The conditioned probability of parents' reporting an episode of illness was estimated by means of logistic regression analysis, taking the psycho-social conditions into consideration.

Setting-18,949 families with at feast one child under the age of 8 years, resident in the County of Ringkøbing in western Denmark at 1 March 1988.

Subjects - An age-stratified random sample of 1982 families was entered in the study. 1588 (82%) families returned the questionnaire.

Results - The parents reported considerable morbidity in their children. The cumulative incidence proportion (CIP) for the period was 48%. The multivariate analysis of the parentreported morbidity led to the following main results: 1) the morbidity was greatest for children aged 6 to 18 months, after which it decreased with age, 2) there was interaction between the care conditions and the child's age - CIP for children up to two years was largest for the children who were cared for in daycare, while the CTP for the older children was largest for the children who were cared for at home, 3) if the parents reported that the child's siblings suffered from chronic or frequently recurring morbidity, the child's morbidity rate was significantly increased, 4) mothers with higher education reported more morbidity in their children than mothers without this education, and 5) parents with a high perception of the general health threat (»worried« parents) reported more morbidity than did parents with a low perception.

Conclusions - The results made it possible to characterize families whose children were frequently reported ill.     

Psychiatric Symptoms and Psychosocial Problems in Primary Health Care as Seen by Doctors

Abstract

Objectives. Parents of sick children frequently visit their general practitioners (GPs). The aim was to explore parents' interpretation of their child's incipient signs and symptoms when falling ill and their subsequent unsatisfactory experience with the GP in order to make suggestions for improvements in the medical encounter. Design. Semi-structured interviews. Setting and subjects. Twenty strategically selected families with a child from a birth cohort in Frederiksborg County, Denmark were interviewed. Results. Parents wanted to consult their GP at the right time, i.e. neither too early nor too late. Well-educated parents experienced a discrepancy between their knowledge about their child, the information they had sought about the illness and the consultation with the GP, when they were dismissed with phrases such as “it will disappear” or “it is just a virus”. The parents went along with the GP's advice if the child only occasionally became sick. However, parents of children with recurrent illnesses seemed very frustrated. During the course of several consultations with their GP, they started to question the GP's competence as the child did not regain health. Conclusions. Parents want to be acknowledged as competent collaborators. The GP's failure to acknowledge the parents' knowledge of their child's current illness, and the parents' attempt to identify what is wrong with the child and make the child feel better before the encounter may have consequences for the GP's credibility. It is therefore recommended that parents of children with recurrent illnesses receive extra attention and information.