Childhood otitis media: the family's endless quest for relief

Otitis media with effusion (OME) is a common disease of childhood that has a profound influence on family life. The findings of a grounded theory study that explored family interaction when a child has OME are contained in this article. Three variables were found to influence the position of the family on a continuum of learning to manage: effects of the disease on the child, disruption to family life, and relationship with the health care system. In this discussion the authors focus on the effects on the child and family life. Comparisons are made with the effects of chronic illness on a family. The documentation of the effects of OME on family life is significant to assist health care professionals in appreciating the gravity of this often trivialized illness. Some strategies are suggested for positive health promotion in these families.     

Harmonizing: a North American Indian approach to management of middle ear disease with transcultural nursing implications.

In a grounded theory study of Canadian Indian family management of persistent middle ear disease, harmonizing was identified as the major strategy employed in the process of learning to manage. This finding resulted in a recasting of the substantive theory of management identified in an earlier study of Caucasian families. Although families from both cultures advance and retreat on the continuum of learning to manage in response to the relationship with the health care system, the effects of the disease on the child, and the amount of disruption in family life, culture was found to influence the ways in which these families learned to manage. In general, native families harmonized by integrating the experience into their reality in contrast with their Caucasian counterparts who attempted to direct or take charge of the experience. Factors that influenced native Indian management included autonomy of the child, perceptions of health and illness, expectations of the health care system, orientation to present and past time, and listening skills. These findings significantly contributed to the development of transcultural nursing knowledge.     

Family Management Style Framework: a new tool with potential to assess families who have children with brain tumors.

Qualitative studies of families with children who have cancer or other serious illnesses have found that families often come to view their child and their lives as normal. They manage illness-related demands using family management styles that sustain usual patterns of family and child functioning. Few studies have addressed the family management styles of families who express less satisfaction with family and child functioning or who are identified by health care professionals as having difficulty with family functioning. Such families are likely to be overrepresented among those whose children are being treated for brain tumors that entail extremely burdensome treatments as well as a range of unfavorable prognoses and long-term sequelae. In fact, little is known about how these families manage on a day-to-day basis and how the interdisciplinary team can best provide supportive care to optimize their functioning. The purpose of this article is to present the Family Management Styles Framework as a tool that is useful in both clinical practice and research for assessing families who have children with cancer, including those with brain tumors.     

Navigating uncharted territory: experiences of families when a child is dying

In this grounded theory study, eight families moved through a process of navigating uncharted territory as they lived with their child who was dying from a neurodegenerative illness. The emotions of fear, uncertainty, and grief gave impetus to the process. Families lived much of their lives on plateaus of relative stability, where they often felt alone and isolated from health care professionals. Periods of instability led to families dropping off the plateau. Living with a dying child had profound physical, emotional, and financial effects on families. The process was characterized by four dimensions. Parents used strategies within these dimensions to manage the physical, cognitive, and emotional work arising from the situation. These dimensions and strategies were constrained and facilitated by four intervening conditions. In addition, the process occurred within the broader context of the acute, curative health care system and the sociocultural environment. Suggestions for practice and research are offered to assist health care professionals in providing optimal care to these families.     

Maternal perceptions of family-provider relationships and well-being in families of children with Down syndrome.

The purpose of this study was twofold: (a) to describe parental perceptions of family-provider relationships, and (b) to explore links between parental perceptions of family-provider relationships and well-being in families with children who have Down syndrome. Mailed questionnaires were used to collect data from 94 families that include a child with Down syndrome. Data from 89 mothers are the focus of this report. The results indicate that when mothers of children with Down syndrome believe that their family's relationship with health care providers is positive and family-centered, they feel more satisfied with the care that their child is receiving and they are more likely to seek help from health care providers. In addition, when a discrepancy exists between what mothers want the family-provider relationship to be and what they believe the relationship is, mothers feel less satisfied with the care that their child is receiving. Finally, higher levels of individual and family well-being are reported by mothers who (a) want, and believe they have, positive family-centered relationships with providers, and (b) feel more satisfied with care received. Results of this study contribute to a better understanding of the role that health care providers play in individual and family adaptation to chronic conditions.     

Children with a long-term illness: parents' experiences of care

A diagnosis of a long-term illness in a child will bring on a major upheaval in the lives of the whole family involved and leads to a long-standing relationship with health care personnel. The purpose of this study was to describe parents' experiences with their child's illness and treatment and with their relationships with health professionals during the process of learning to care for their child. Data were collected by conducting open-ended interviews with parents (N = 11) whose child had been diagnosed with a physical long-term illness at least 1 year previously and were analyzed using qualitative content analysis. Parents' needs for information and support varied and consisted of different components in different phases of the process. During the diagnostic phase, parents were recipients of information; it was important for them to receive consistent empathetically provided information. In the next phase, parents, having gained experience of day-to-day home care, engaged in a change toward a two-way flow of information with the professionals; mutual trust was essential for the exchange of information needed for a child's proper care. Without a permanent relationship with health professionals, parents showed lack of trust in professionals' knowledge of their child's condition and care. Professionals' lack of trust in parents' expertise in their child's care was also problematic. Health professionals should lay the groundwork for a partnership in which both parties acknowledge each other's competencies; parents' needs ought to be continuously reassessed. A permanent relationship between families and health care personnel is required to achieve this.     

Comparing Psychological Adaptation to having a Disease Gene in Affected Individuals and Unaffected Carrier Parents

Health care professionals are in an ideal situation to help families inform their children about genetic conditions. In families where there is a child with a known genetic condition, parents make decisions about when and how to convey information to their children, however, little is known about how parents make these decisions. The purpose of this qualitative analysis was to examine parents' beliefs and strategies related to sharing information with their children. The sample consisted of 139 parents of children with sickle cell disease, phenylketonuria, cystic fibrosis, Marfan syndrome, neurofibromatosis, hemophilia, and von Willebrand disease. Audio recorded, semi-structured interviews were transcribed verbatim, processed, and coded using the ATLAS.ti software. Thematic analysis found: parents share information and develop specific strategies within a context of normalizing the child's life; parents' decisions to share information are based on a developmental framework; parental strategies for sharing information with children may differ when the child has a potentially life-limiting genetic condition. Findings emphasize the need to use a family developmental perspective when working with families of children with genetic conditions. These findings will provide new information about how families manage information and provide direction for care of families in which a child has a genetic condition.     

Promoting family-centered care with foster families.

There has been a tremendous increase in the need for foster families since the 1980s largely because of the effects of drug abuse on the child and the biological family. As many as 500,000 children are currently living with foster families. Many children living with foster families were exposed to drugs before birth. Even those not exposed before birth demonstrate the effects of having lived with drug-abusing family members. Family life for these children is very often chaotic and unpredictable. There are increased health care needs for foster children due to drug-exposure and neglect. Yet, research suggests that the health care needs of foster children are often neglected. Foster families report that their concerns and needs are, frequently, neither recognized nor addressed by health professionals. Pediatric nurses can improve health care by increasing their awareness of the special needs of foster families and foster children.     

Family management style framework and its use with families who have a child undergoing palliative care at home

Palliative care settings in many countries acknowledge families as their prime focus of care, but in Brazil, to date, researchers have devoted scant attention to that practice setting. In this article, we report the findings of a study that explored how families define and manage their lives when they have a child or adolescent undergoing palliative care at home. Data included individual semistructured interviews with 14 family members of 11 different families. Interviews were transcribed and the coding procedure featured qualitative content analysis methods. The deductive coding was based on the major components of the Family Management Style Framework and the eight dimensions comprising these components. The analysis provides insight into families' daily practices and problems inherent in managing their everyday lives that are encountered when they have a child in palliative care. The article features discussion of implications for the palliative care related development of family nursing practice.     

Parents' experience of coming to know the care of a chronically ill child

The family is the primary source of care for a chronically ill child, and it is the parents who must manage the child's illness on a daily basis. This qualitative study was undertaken to investigate the ways in which 10 two-parent families of children with juvenile arthritis experience their child's illness. In this paper the theme of coming to terms with the management of the illness and what it entails for the parents is examined. The data provide evidence of how the parents learn, and their efforts and experience of learning to care for the child on a daily basis. This is a complex process and includes the different phases the parents experience as they move through the learning process. The findings suggest that the parents learn the child's care and make adjustments to the demands of managing the child's illness in a way that works best for them.     

A holistic intervention programme for families with a child with a disability

BACKGROUND: The birth of a child with a disability may cause serious stress for the parents and affect each member of the family. Parents need support to deal with such a situation; however, health care professionals themselves are not always well equipped to help them and often adopt an attitude of withdrawal. AIM: The aim of this paper is to describe a family intervention programme developed in collaboration with families who were adapting to the birth of a child with a disability. DISCUSSION: The primary purpose of the programme is to help family members adapt to the situation in which they suddenly find themselves, primarily by reducing stress. The family's autonomy and competencies in providing care for the child are promoted and called into action. The programme encompasses different aspects of family relations: the individual, marital, parental, family, extended family and non-family sub-systems. Its theoretical foundations, clinical experience with families of a child with a health problem, and our previous research have enabled a remodelled vision of the way individuals and families adapt to such a situation. CONCLUSION: The symbioses of the design of the programme, training in its application, and intervention itself have transformed families of a child with a disability as well as the nurses themselves. The key element of this transformation has been the mutual recognition of relevant skills and authority by families and health care professionals that has led to new competencies, self-determination and an individuality that may change their lives.     

Learning to nurse: the family as the unit of care*

How can we prepare nurses who will have as their focus of practice, the health of the family unit? This paper describes the learning outcomes which were generated from a short term experience in a curriculum where the major thrust is learning to nurse families in a health promoting way. Students were provided with experience with families who were undergoing an important family event, e.g., coping with the short term hospitalization of a child. An exploration and analysis of these experiences revealed for students the content of nursing families who are in the process of dealing with this particular event of family living. This content related to the acquisition of nursing skills of an interpersonal, technical and decision-making nature as well as the development of knowledge which provides the basis for nursing the family as the unit of care.     

Stresses and coping strategies of mothers living with a child with cystic fibrosis: implications for nursing professionals

BACKGROUND: Cystic fibrosis (CF) is the most common inherited disease of childhood. Caring for a child with CF is stressful and this has implications for the main carer, the parental relationship, well siblings, family functioning as well as the affected child. AIM: This study aimed to explore current stresses and coping strategies used by mothers and to identify roles and strategies that nursing professionals could extend or adopt to support them and families of children with CF. METHOD: Semi-structured interviews were carried out with 17 mothers of children with CF who attended the regional cystic fibrosis hospital clinic. Interviews were analysed using the Framework method of analysis. FINDINGS: The study suggests that major stresses for many mothers are feeling in the middle in terms of decision-making particularly concerning the genetic implications of CF, the burden of responsibility for parenting a child with a chronic illness, and coming to terms with a personal change in identity. The most commonly used coping strategy was seeking support from others including nursing professionals. Relationships with health professionals in secondary care were generally positive, with nurses often the first people mothers turned to when they had concerns and also key in interpreting medical information. Relationships with primary care health professionals appeared to be more limited with a role reversal described by some mothers who felt it their responsibility to educate and inform primary care professionals about CF. CONCLUSIONS: This study suggests that nursing professionals in primary and secondary care need to look beyond the care of the child to the needs of the mother. It provides evidence to suggest that nursing professionals in primary and secondary care have a number of important roles to play as holders of hope, bridge builders and in providing continuity of care for such families. It also suggests strategies to strengthen nurse-patient relationship.     

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.     

A family nursing approach to the care of a child with a chronic illness

Chronic illness in childhood affects family functioning, and professional support is required when the child is being cared for at home. The focus of concern for this study is the nursing contribution to the support of the family. A longitudinal ethnographic study of the experience of four families caring for a child with cystic fibrosis provided data. Analysis of the four case studies provides insight to the effect of cystic fibrosis on family interaction. The genetic aspects and the life-threatening nature of the illness are seen to have a profound effect on the parents' lives. The experience of crisis and the chronic burden of care are described. The context of long-term care requires the nurse to share the illness trajectory with the families and to help family members to travel it together. This is seen to require a high level of interpersonal skill and considerable emotional investment. The issues for nursing are examined. The research arose from practice, and it contributes to theoretical explanation of nursing interaction, and the relationship of systems thinking to understanding of the nursing situation. The case for the development of family nursing practice to meet contemporary health care needs is argued.     

The diversity of family health: constituent systems and resources

The purpose of this study was to explore changes in family health associated with child's chronic illness and hospitalization. The aim was to answer the following questions: (i) What kind of changes do families experience when a child in the family is afflicted by a chronic illness; and (ii) What kind of changes do families experience when their child is admitted to hospital? The data were collected in 2002 in interviews with 29 such families whose children were receiving treatment or who had previously received treatment on the paediatric wards of two hospitals in Finland. Data were collected until reaching theoretical saturation, in which no additional data are found. Data analysis was based on the grounded theory method, proceeding to the stage of axial coding. Family health was formed out of two different dimensions: the constituent systems and the resources of family health. The constituent systems describe the impact of the child's chronic illness and period of hospitalization at the level of both individual family members and the family as a whole. These systems were described by five categories: (i) ill child at the centre of family attention, (ii) siblings in a minor role, (iii) the child's illness governs parental well‐being, (iv) the roller coaster of the couple relationship and (v) the whole family is ill. The resources promoting and maintaining family health were divided into six different categories: (i) creative and maintaining mental images, (ii) active involvement, (iii) internal coping means, (iv) reinforcement of coping means, (v) awareness and change of values and (vi) social network shares emotional burden and responsibility for care. The results of the study show that family health is highly vulnerable when a child has to be admitted to hospital because of a chronic condition. They should help nursing staff gain a clearer picture of the depth and diversity of family health and support the resources that promote family health. Future research should study the methods of family nursing used in the care of families with children with chronic conditions.     

Raising the bar for health and safety in child care

During the past few decades, this country has experienced many socio-economic changes including a rise in the number of dual-income families and single parent homes. Combined with a fluctuating economy and drastic reforms in welfare, one of the results has been an ever-increasing number of children being cared for in out-of-home settings. With almost 75% of all children under age 5 years and 50% of infants in some form of child care on a regular basis, opportunities abound for nurses to promote optimal health and safety in child care. To ensure quality child care for these children, health care professionals are uniquely positioned to provide consultation services to centers and family child care settings. With expertise in child development, infection control, disease prevention, and health promotion, pediatric and public health nurses can provide many types of child care health consultation services to impact the care of these children positively.     

The impact of a chronic condition on the families of children with asthma

As the incidence and severity of asthma continues to escalate, many families will encounter complex issues related to condition management and family coping. Nurses must understand the impact that a chronic condition can have upon the family in order to assist parents in developing their ability to manage their child's care. The use of an assessment tool, such as Hymovich's Parent Perception Inventory (HPPI) can assist nurses in this effort. Several research studies have demonstrated that common child and family concerns include time away from school and work; social restrictions; fear of exacerbations; and anxiety over treatment protocols. A preliminary study on a small convenience sample of families showed that parents had greatest concerns about time management, financial strain, and family relations (see Figure 1). Important nursing interventions related to family management of asthma include assessing family perceptions and coping abilities; encouraging expression of feelings and concerns; educating the child and family about the disease and condition management; supporting positive coping behaviors; and securing resources to help families manage their child's condition.     

Time management: realities for parents living with children with motor deficiencies]

A quantitative study involving 244 families from three health and social service regions of Quebec was undertaken to explore how families function. Fourteen families agreed to participate in the qualitative part of this study. Twenty-eight parents participated through an in-depth interview. During the interviews, the impact of the presence of a child with a motor disability on the parents' use of time was discussed. An analysis of the themes and categories highlighted the different aspects of the impact of a handicapped child on the parents' use of time in relation to the four spheres of life. In fact, the parents that were interviewed indicated that the presence of their child greatly influenced the time they had available for their personal, conjugal and family life as well as for doing any paid work. In general, mothers devoted more time than fathers to the care of the child. This situation has a direct impact on the way the mothers manage their time. Based on an analysis of the respondents' comments, the author recommends to offer support to the parents in order to assist them with time management.