Children's views of their adaptation to type 1 diabetes mellitus

When a family learns their child has insulin-dependent type 1 diabetes mellitus, or type 1 diabetes, shock and anxiety are quickly followed by the reality of the demands of managing the condition. Demands include injections or continuous insulin infusion, blood glucose monitoring 2 to 4 times a day, regimented meal planning, and intensive planning of daily activities. Like many chronic illnesses, type 1 diabetes can have long-term effects on the child and family. Health providers must offer support in a number of ways. To determine the best way to approach children with diabetes mellitus, this study examined children's perceptions of their adaptation to type 1 diabetes. Recognizing children's own perceptions is critical for long-term understanding and management. The children in this study had overall positive self-perceptions and good attitudes toward illness. Even though many adults perceive diabetes mellitus in children as an overwhelming experience, the children's attitudes in this study were very positive.     

Social support and health: a theoretical formulation derived from King's conceptual framework

This article describes the development and initial empirical testing of a theoretical formulation of social support, family, health, and child health derived from Imogene King's conceptual framework for nursing. A correlational design was used to test the formulation with 103 families who have children with diabetes mellitus. Three hypotheses were supported: parents' social support had a direct and positive effect on family health, parents' social support and child's social support were positively related, and illness factors had a direct and negative effect on child health. Both the supported and unsupported hypotheses are discussed in terms of the present substantive knowledge base and evidence of validity for King's framework. Direction for further theory development and research are identified.     

Insulin-dependent diabetes mellitus and child abuse: is there a relationship?

Many of the family psychosocial variables significantly related to child abuse are also significantly related to insulin-dependent diabetes mellitus (IDDM) control. These variables are reviewed, and an increased child abuse risk factor for children with IDDM is discussed. Behavioral indicators of families experiencing difficulty in coping with IDDM are provided. These indicators are associated with both diabetes control and child abuse and should be recognized by diabetes health-care professionals.     

Impact of chronic illness in children on parental living conditions. A population-based study in a Swedish primary care district.

In a geographically defined child population aged 0-15, every twelfth child suffered from chronic illness. Their parents and randomly selected control children's parents were asked about their living conditions using questionnaires. Non-responders (30%) had the same sociodemographic profile as responders. The socioeconomic level in index families (n = 95) was lower than in control families (n = 166). Both parents worked fewer hours in index than in control families. Index mothers had more health problems and sick days than control mothers. The parents' social relations were most hampered by having children with allergic disorders or mental retardation. Despite reduced hours, more absence from work to care for sick children, and reduced leisure activities, two thirds of the parents of moderately/severely disabled children found it difficult to cater adequately to the needs of their child. A family approach is recommended to provide comprehensive care of children with chronic illness, in which both specialized and primary care are needed.     

Home care management in chronic illness and the self-care movement: an analysis of ideologies and economic processes influencing policy decisions

Over the past few decades there has been an increasing trend toward self-care and home health care, and one would suspect that these trends will continue into the next century. This article addresses the policy issues that have arisen from a program of research with families caring for a child with a chronic illness in the home and with women who have diabetes mellitus. The argument is developed that, although the home care and self-care movements can be seen as directed toward providing more humanistic care and promoting the independence of the client, the economic and sociopolitical factors that influence their development should not be overlooked. Furthermore, the "cost of caring" must be reckoned with in both human and economic terms. Cost-effective care, in the long run, will mean care that takes into account the social context of health and illness.     

Caring for children with special needs in HMOs: the consumer's perspective

HMOs should design and include in their services case management systems and health plan policies that meet the special needs of children with chronic illness and their families. Information provided by the plan on case management support and access to specialty care services is critical in helping families choose HMOs that can best serve their child. A child advocate illustrates certain steps, including partnership roles, that health plans can take to assist families with children with special needs.     

Challenges of decision making for families of children with single or multiple chronic conditions

When a child is diagnosed with a chronic illness, families begin a constant cycle of decision making. Many of these decisions surround health care treatment. These families can be divided into two groups: those with children newly diagnosed with a chronic condition and those with children who have a preexisting illness. If a new diagnosis represents a family's entrance into the medical community, the decision-making process can be confusing and difficult. For the family of a child with a preexisting condition, making repeated decisions about treatments can be additionally stressful and anxiety provoking because of their medical history. How do families with a child with a preexisting medical condition differ in their decision making? What factors affect their decisions? The nurse practitioner has a critical role interacting with both types of families and guiding the decision-making process. Therefore, understanding the family and their previous experience is crucial to determine how nurse practitioners can best tailor interventions to promote effective decision making.     

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.     

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.     

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.     

Factors associated with the adaptation of parents with a chronically ill child

? The purpose of this paper is to describe the adaptation of parents who have a child with a chronic condition and some factors connected to it. ? Data were collected by a questionnaire from 189 parents who had a child with a chronic condition, such as diabetes, rheumatoid arthritis or asthma. Most (85%) of the responses were from mothers. ? The data were analysed using factor analysis. A four-factor model turned out to describe best the adaptation of the parents and their coping with the care of a chronically ill child. Two factors showed good adaptation and two poor adaptation. ? Emotional and instrumental support were connected to adaptation on each of the four factors. ? Support from health care staff and the parents' need to obtain more information were not connected to adaptation as clearly as emotional and instrumental support. ? Parents wished for support more in families where the child was under nine years old than in families where the child was over nine years old.     

Compliance of adolescents with chronic disease

The purpose of this paper is to describe the factors that affect compliance in adolescents with a chronic illness and to compare compliance and factors connected to compliance between adolescents with asthma, epilepsy, rheumatoid arthritis (JRA) and insulin dependent diabetes mellitus (IDDM). The data were collected by questionnaire. Altogether 1200 individuals were selected from the Finnish Social Insurance Institution's register. The response percentage was 88 (n = 1061). One-fifth (23%) of adolescents with chronic disease felt that they had complied fully with health regimens, while 60% placed themselves in the category of satisfactory compliance and the remaining 17% reported poor compliance. In each patient group compliance was promoted by good motivation, a strong sense of normality, a positive attitude towards the disease and treatment, energy and will-power, experience of results, support from the parents, nurses and physicians, and a feeling that the disease was not a threat to social well-being.     

Cohesion and parents' social relations in families with a child with disability or chronic illness.

We studied how a child's physical or intellectual disability or diabetes affected family cohesion, the parents' social life, work and leisure-time activities, and whether there was any association between the parents' social relations and family cohesion. The parents of 89 children aged 12-17 years returned a questionnaire and were interviewed by a social worker. Family cohesion increased in all the groups by an average of 27%. The effect was smallest in the families of children with diabetes, whereas in the families with intellectual or physical disability family cohesion increased from 6 to 13 times more often compared to the families of children with diabetes. The increased family cohesion was not associated with the change in the parents' social relationships, work, career or leisure-time activities; the importance of these activities did not decrease even though family cohesion increased. However, a child's chronic illness or disability affects the everyday life of the family, for instance 71% of the parents with diabetic children thought that the regularity of family life increased and about a half of the parents with physically or intellectually disabled children had to change their hobbies because of the child. In planning treatment and rehabilitation for a chronically ill or disabled child more attention should be paid to the whole family and its needs, not only to the child.     

Promoting health in families of children with type 1 diabetes mellitus

de Oliveira IR, Nascif‐Júnior IA, Rocha SMM. International Journal of Nursing Practice 2010; 16 : 106–111
Promoting health in families of children with type 1 diabetes mellitus This paper presents a study of families of children with type 1 diabetes mellitus, emphasizing the identification of social supports and networks to strengthen interventions aimed at health promotion. The approach selected was a qualitative research, using a case study design. Four families of children with diabetes type 1 were studied, totalling seven participants. Data were collected between April and June 2007, through in‐depth interviews and the construction of a genogram and an ecomap. The results presented the families' characterization and testimonies grouped in the following categories: social support, social networks and family roles. To promote care in practice, there is a need to identify the characteristics of each family and resources available that provide better living conditions. We concluded that identifying supports and social networks allows for more personalized care delivery to each family with a view to health promotion.     

Living with type 1 diabetes: perceptions of children and their parents

Aim. To explore and describe the experiences of children and their parents living with type 1 diabetes mellitus from diagnosis onwards. Background. Type 1 diabetes mellitus is a psychologically and behaviourally demanding chronic condition that necessitates children and their parents taking extensive responsibility for managing the condition. Diabetes management involves maintaining a highly effective level of treatment to reduce the risks of short‐ and long‐term complications. Treatment is carried out in the context of daily life, but little research evidence is available about this experience. Design. A phenomenological study using conversational interview. Method. A purposive sample of 10 children, (aged 4–17) living with type 1 diabetes mellitus and their parents participated in this study. Participants were from different ethnic backgrounds and at differing lengths of time since diagnosis. Data were generated through conversational interviews and analysed using thematic analysis. Results. The central theme that was identified was ‘normal’. This was underpinned by four subthemes: transition, attachment, loss and meaning. The notion of ‘normal’ is dominant in the lives of these children and their parents because diabetes not only makes these families different, but also makes their pursuit of ‘normal’ more visible. Conclusion. These findings highlight that, despite different cultures, ages and lengths of time since diagnosis, families living with diabetes share very similar experiences. Understanding how children and parents create meaning and how this meaning influences their actual and potential health problems, is important if the provision of healthcare is to be effective in meeting their needs. Relevance to clinical practice. Conducting child‐ and parent‐centred qualitative research allows exploration of the perceptions and understanding of type 1 diabetes mellitus and the meaning ascribed by children and their parents who live with the condition. Diabetes is a lifelong, life‐threatening condition that has a significant impact on children’s and parents’ lives. Developing a deeper understanding of their lives and experiences will enable the delivery of nursing care to meet their specific needs.     

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.     

Promoting Normalization in Families With Preschool Children With Type 1 Diabetes

issues and purpose. The family environment is the most important influence on child adaptation to type 1 diabetes. A plan of care assists parental adaptation in families with a preschool child with type 1 diabetes.
conclusions. The family environment is affected by the family's progress toward normalcy. Normalization can be facilitated by nursing interventions that promote parental mutuality in management and the development of a parental support system.
practice implications. Nurses can provide education about Type 1 diabetes and its management in preschool children to fathers, other family members, and family friends to encourage their involvement in caregiving. Parental mutuality in management and an adequate parental instrumental support system facilitates normalization and affects the family environment, thus promoting child adaptation.     

Asthma: a health disparity among African American children: the impact and implications for pediatric nurses

Asthma is the most common chronic illness among children and is a significant health disparity for African American children and their families. This article provides current statistics that clearly define the problem of asthma and explains the relevance of this health problem for pediatric nurses. The Healthy People 2010 objectives for pediatric asthma care are discussed as outcome measures. The individual, sociocultural, and environmental characteristics of asthma are described. The impact and implications for pediatric nurses in the roles of (a) coordinator of care, (b) child/family advocate, and (c) evaluator of care are explained.     

Caring for a child with cystic fibrosis: the children's nurse's role

This article presents a narrative literature review of the psychosocial impact on family life of caring for a child diagnosed with cystic fibrosis. Diagnosis of long-term illness in a child causes major upheaval in the lives of both the child and family. Normal family life is often emotionally, socially, physically and financially disrupted. Amid such disruption, parents attempt to cope by creating a semblance of order in their lifestyle. Within an interdisciplinary approach to caring, the children's nurse plays a pivotal role in supporting families to establish such order and reconstruct their lives, while coming to terms with the knowledge that their child could die prematurely. In addition, the nurse, in his/her role as teacher and educator, empowers parents, children and young people with the knowledge to make informed decisions and assists parents in developing the skills (often technical) to care for their child. Cystic fibrosis is one such condition in childhood, and this article explores the main psychosocial issues experienced by families caring for their child following diagnosis of CF, as raised in the literature.     

Technology-dependent children and their families: a review

Background. Advances in medical technology and nursing care have enabled children who rely on long‐term medical and technical support to reunite with their families and community. The impact of discharging these children into the community involves a number of unprecedented social implications that warrant policy consideration. To begin with, an effort must be made to understand the phenomenon of caring for technology‐dependent children living at home. Aim. The aim of this paper is to provide a comprehensive literature review on caring for technology‐dependent children living at home. Methods. The review was conducted via keyword searches using various electronic databases. These included CINAHL, MEDLINE, Social Science Index, Sociological Abstracts, Australian Family and Society Abstracts, and the Australian Bureau of Statistics. The articles and books found were examined for commonality and difference, significant themes were extracted, and the strength of the research methods and subsequent evidence were critiqued. Findings. In this paper, themes relating to home care for technology‐dependent children and their families are elucidated and summarized. These are: chronic illness and children; the impact of paediatric home care on children; the uniqueness of technology‐dependent children and their families; and parents’ experience of paediatric home care. Discussion. Contentious issues, relevant to the social life of these children and their families, are raised and are discussed with the intention of extending awareness and provoking further debate among key stakeholders. These issues include: the changed meaning of home; family dynamics; social isolation; saving costs for whom?; shifts in responsibility; and parent–professional relationships. Conclusion. More research is needed in the arena of paediatric home care, to facilitate relevant policy formation and implementation.