Continuing nursing care needs of children at time of discharge from one regional medical center in Sweden

Hospital nurses used an investigator designed survey instrument to record demographics and anticipated nursing needs of 29 children discharged from 7 units during a 1 month period. The median age of the children was 18 months and 77% of the sick children had one or more siblings. Parental leave enabled most parents to participate in the child's hospital care. Over three quarters of the families reported no support person available to assist them at home. At time of discharge 42% of the children required long-term nursing interventions related to chronic illness. Nurses trained parents visiting in the hospital for an average of 3 hours and 40 minutes per family before discharge. Nurses also arranged an informal system of follow-up telephone contact but few community referrals. With decreasing length of hospital stay, parents need a formal system of nursing support before and after the discharge of their child from a hospital.     

Effect of having siblings in the exam room on parents' retention of clinicians' instructions.

This study investigates the effect of siblings in the examining room on a parent's ability to learn and retain instructions for the care of a sick child. A sample of 49 parents was randomly divided into experimental (E) and control (C) groups. The E parents brought only their sick child into the examining room, while their well children were kept in a supervised waiting room. The C parents brought their well children along with their sick child into the examining room. In all cases, the sick child had either an upper-respiratory infection or an ear infection requiring antibiotics. Instructions to parents dealt with antibiotic treatment and care of the sick child. Each subject took one pretest and two post-tests. Post-test one, given at the conclusion of instruction, measured learning. Post-test two, given two weeks later, measured retention. Results showed that there were no significant learning differences between the groups, but that the E-group parents retained significantly more of the practioner's instructions than the C-group parents.     

Weaving the seamless web of care: an analysis of parents' perceptions of their needs following discharge of their child from hospital

Changes in children's nursing services in the United Kingdom in recent years have focused on the need for adequate and efficient services to be provided in the interests of the child. Early discharge is now the norm and children are often sent home in an earlier recovery stage than adults with comparable conditions. Whilst the contributions of paediatric community nursing services have gone some way to providing specialist nursing care for children and their families in their own homes, the majority of children are discharged home without such support being available. This may place an overwhelming responsibility of caring for a recovering child onto parents. The purpose of the qualitative research reported in this paper was to identify any gaps in nursing services for acutely sick children and their families following discharge, and to suggest ways to improve integration and communication between hospital and primary care to facilitate a 'seamless web of care' for families. Families were surveyed following discharge (n=164) and interviews carried out with those experiencing problems (n=20). General practitioners were also surveyed for their opinion as key contributors of primary care. Findings revealed the isolation felt by parents following discharge, with their need for information about a child's illness and expected recovery, and for reassurance and specific advice through some means of support, which was clearly not being met. The perceived benefit of continuity of care was a common theme, with both parents and professionals acknowledging the importance of closer liaison between hospital and primary health care services. This study is valuable in providing preliminary qualitative information regarding the gaps in children's nursing services and how these can be overcome by using our present resources more imaginatively, in order to ensure the delivery of cost-effective and quality health care services in the best interests of local need.     

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.     

Satisfaction with care: a study of parents of children with congenital heart disease and parents of children with other diseases

AIM: We compared parents of children with congenital heart disease (PCCHD, n=1092) with parents of children with other diseases (PCOD, n=112) regarding satisfaction with their children's care (SCC). We also examined the association between parental/patient characteristics and SCC. METHOD: The parents completed a questionnaire about such areas as satisfaction with care, children's health status, and financial situation. The design was cross-sectional and data were gathered over 20 consecutive days. RESULTS: The univariate and multivariate analyses showed that PCCHD were more satisfied with their children's medical care and waiting period for treatment of their ill children than PCOD, although the difference was only modest. Furthermore, mothers were less satisfied with staff attitudes than fathers, with the lowest satisfaction among mothers of children with CHD. However, the multivariate analysis indicated that less satisfaction with care was more associated with decreasing child age, unemployment, financial burden of disease, social isolation and psychological distress than with children's diseases, their severity and parental gender. CONCLUSION: We corroborated some previous findings and may have provided new insights regarding determinants of SCC among parents. Interventions to improve SCC may need to address issues of parental psychological distress, socialization, and financial burden of illness. Possible ways of achieving this are discussed. Finally, research in a longitudinal format is needed to further scrutinize determinants of parental SCC.     

The impact of maternal depression on children with asthma

This integrative literature review focuses on the impact of maternal depression on children with asthma. Maternal depression has a negative impact on a child's growth, development, behavior, mental health, safety, and health care utilization. Mothers of children with chronic conditions such as asthma have higher rates of depression compared to mothers of children without a chronic condition. Research has shown that maternal depression has the potential to increase asthma morbidity and health care utilization. In addition, mothers with depressive symptoms report lower self-efficacy in their ability to care for their children with asthma, which can affect their ability to manage their child's asthma with the prescribed medication regimen. To provide optimal care for children with asthma and their families, pediatric care providers must perform periodic depression screening to mothers or caregivers. Depressed mothers or caregivers of children with asthma require care coordination and management that consists of increased education on asthma and depression, and more frequent follow up than families without maternal/caregiver depression. These additional care measures have numerous positive benefits, including enhancing the quality of life in both the child and caregiver by improving asthma management in the child and depressive symptoms in the mother, as well as decreasing costs imposed on the economy through reduced emergency department visits, hospitalizations, missed work days, and missed school days.     

Parental perceptions of health care for children with chronic illness--a population-based study in a Swedish primary care district.

The division of responsibilities between specialized and primary health care for children with chronic illness is unclear. The utilization and perceptions of primary and specialized care were examined by means of a questionnaire mailed to the parents of all chronically ill children and a randomly selected control group. No difference in sociodemographic variables of responders (70%) and nonresponders was found. The study comprised 98 index and 168 control children. The index children utilized both primary and specialized care more than controls. The overall satisfaction with health care was high, but primary care did not come up to the expectations of many chronically ill children's parents. Satisfaction with specialized care but not with primary care had improved during the previous 15 years. Recognition in primary care of childhood chronic illnesses and their psychosocial consequences is important. In co-operation, the two health care levels together could enable a comprehensive, well-coordinated, and continuous care for these children.     

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.     

Mothers' perceptions of child care assistance: the impact of a child's disability.

OBJECTIVE: This study examined and compared mothers' perceptions of child care assistance provided by fathers and other caregivers. Awareness of child care division of labor will assist occupational therapists in addressing the needs of children with disabilities within the family context. METHOD: One hundred and thirty-five mothers living in two-parent households kept a time diary of their daily activities for 7 consecutive days using the Caregiver's Activity and Recording of Events Inventory and estimated the percentage of child care their partners performed, the amount of child care their partners performed, and their satisfaction with this division of labor. One third of the women had children with multiple disabilities, one third had children with Down syndrome, and one third had children who were typically developing. RESULTS: The majority of mothers in all three groups perceived that they were responsible for the majority of child care. There were no significant differences between groups in terms of mothers' perceptions of the amount of child care provided by fathers and other caregivers, including relatives, childsitters, nurses, school personnel, and neighbors. However, there were wide variations among families concerning child care arrangements and division of labor. Seventy-five percent of mothers indicated that they were satisfied with the division of child care labor between mothers and fathers, and no significant correlation was found between perceived percentage of child care performed and satisfaction with the division of labor. CONCLUSION: Mothers in this study were responsible for the majority of child care whether their child had a disability. The variation in number of hours that others spent performing child care activities within individual families suggests that there is no "best" or typical pattern. Occupational therapists need to collaborate with families to determine a system of accommodations to manage their daily routine that most effectively meets the family's needs.     

Parental Perceptions of Health Care for Children with Chronic Illness-A Population-based Study in a Swedish Primary Care District

The division of responsibilities between specialized and primary health care for children with chronic illness is unclear. The utilization and perceptions of primary and specialized care were examined by means of a questionnaire mailed to the parents of all chronically ill children and a randomly selected control group. No difference in sociodemographic variables of responders (70%) and nonresponders was found. The study comprised 98 index and 168 control children. The index children utilized both primary and specialized care more than controls. The overall satisfaction with health care was high, but primary care did not come up to the expectations of many chronically ill children's parents. Satisfaction with specialized care but not with primary care had improved during the previous 15 years. Recognition in primary care of childhood chronic illnesses and their psychosocial consequences is important. In co-operation, the two health care levels together could enable a comprehensive, well-coordinated, and continuous care for these children.     

Comparison of single-mother and two-parent families on metabolic control of children with diabetes

OBJECTIVE: To understand the impact of family structure on the metabolic control of children with diabetes, we posed two research questions: 1) what are the differences in sociodemographic, family, and community factors between single-mother and two-parent families of diabetic children? and 2) to what extent do these psychosocial factors predict metabolic control among diabetic children from single-mother and two-parent families? RESEARCH DESIGN AND METHODS: This cross-sectional study included 155 diabetic children and their mothers or other female caregivers. The children were recruited if they had been diagnosed with diabetes for at least 1 year, had no other comorbid chronic illnesses, and were younger than 18 years of age. Interviews and self-report questionnaires were used to assess individual, family, and community variables. RESULTS: The findings indicate that diabetic children from single-mother families have poorer metabolic control than do children from two-parent families. Regression models of children's metabolic control from single-mother families indicate that age and missed clinic appointments predicted HbA1c levels; however, among two-parent families, children's ethnicity and adherence to their medication regimen significantly predicted metabolic control. CONCLUSIONS: This study suggests that children from single-mother families are at risk of poorer metabolic control and that these families have more challenges to face when raising a child with a chronic illness. Implications point to a need for developing strategies sensitive to the challenges of single mothers.     

Hospitalized children with chronic illness: parental caregiving needs and valuing parental expertise

Parents who care for a child with a chronic illness are forced to relinquish much of the control of the child's care when the child is hospitalized. By using the family systems theory as the underlying framework, the amount of control that parents of children with chronic illness wanted over their hospitalized child's care, and the degree to which parents felt health care professionals valued their expertise, was examined in a national sample of 50 parent caregivers. Participation in information sharing and technical care were areas over which parents wanted the most control. Nurses and attending physicians were rated highest in valuing parental expertise. Content analysis of an open-ended question on parental control revealed that parents felt a higher quality care was given at home than in the hospital; nurses were too busy or understaffed to provide optimal care in the hospital; and the child's control of care and decision making should increase as the child grew older.     

Stress-point intervention for parents of repeatedly hospitalized children with chronic conditions

Little is known about how to assist children with chronic conditions and their families cope with repeated hospitalizations. A two-group, pretest–posttest study was done to determine whether a community-based, stress-point nursing intervention for parents could decrease distress and improve child and family functioning. Fifty participants were randomly assigned to intervention or usual care control groups. The intervention focused on specific, parent-verified child and family issues. Three months after hospitalization, intervention parents had better coping and family functioning than those in the usual care group. Intervention parents' anxiety was initially higher and then lower. There were no child behavior differences between the groups after hospitalization. Intervention children had no developmental regression at 2 weeks and better developmental gains 3 months after discharge than the usual care children. Stress-point intervention for families and their children with chronic conditions improved family coping and functioning, and eliminated hospitalization-induced developmental regression. © John Wiley & Sons, Inc. Res Nurs Health 20: 475–485, 1997     

Emergent admission to the pediatric intensive care unit: parental concerns

To identify parental concerns when a child is suddenly admitted to the pediatric intensive care unit, 17 parents of ten critically ill children were interviewed using a structured format between 20 and 36 hours after admission about their concerns around the time of admission and at the time of interview using the Parental Concerns Scale. The individual concern items receiving the highest ratings were the child's survival, the possibility of mental or physical impairment, the child's diagnosis, and the amount of pain experienced by the child. Total concern scores decreased over time for both mothers and fathers when the child's prognosis was good and, for mothers only, when the child had an infectious illness rather than accidental injuries. Implications for nursing practice are discussed.     

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.     

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.     

Psychosocial Problems Among Siblings of Children with Disabilities in Japan: Psychosocial Association Between Mothers and Siblings

We conducted a questionnaire survey to evaluate the psychosocial condition of siblings of children with disabilities in Japan. The participants were 50 siblings (aged 5–12, male = 42.0%) of children with disabilities and their parents as well as a control group consisting of 128 elementary school pupils (aged 6–12, male = 57.4%) and their parents. The proportion of mothers of children with disabilities suffering from a minor psychiatric illness and the proportion of corresponding siblings with psychosocial problems were significantly higher in the test group than in the control group, and a multiple logistic regression analysis indicated that mothers suffering from a minor psychiatric illness were significantly associated with siblings with psychosocial problems among families of children with disabilities. We discuss the psychosocial problems of siblings of children with disabilities.     

Negotiating lay and professional roles in the care of children with complex health care needs

BACKGROUND: Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses). AIMS OF THE PAPER: To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents. DESIGN: Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community. FINDINGS: From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur. CONCLUSION: This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent-professional relationships that are characterized by conflict rather than partnership.