Using Parents' Concerns to Detect and Address Developmental and Behavioral Problems

purpose . Half of all children with disabilities are not identified before school entrance, precluding their participation in early intervention programs with known value in reducing high school dropout rates, increasing employment, delaying child-bearing, and reducing criminal behavior. Screening tests that can greatly improve detection rates have not been popular in primary care. This article describes an alternative approach in an evidence-based technique relying on professional elicitation and interpretation of parents' concerns.
population . 971 children from pediatric practices, day-care centers, public schools, and their siblings.
conclusions . Research shows that parents' concerns are as accurate as quality screening tests and that parents are equally able to raise important concerns regardless of differences in education and child-rearing experience. Parents' concerns can be elicited quickly, and 92% of parents can answer questions in writing while in exam or waiting rooms. Parents' concerns can help make a range of other important decisions about children's developmental and behavioral needs.     

Parent-held child health records do not improve care: a randomized controlled trial in Norway

OBJECTIVE: To study the effects of a parent-held child health record (PHCHR) that was created by the Norwegian Board of Health with the purpose of introducing this to the whole country. DESIGN: Randomized controlled trial. SETTING: Maternal and child health centres in 10 municipalities in Norway. SUBJECTS: Parents of 309 children attending the National Preschool Health Surveillance Programme. INTERVENTION: Half of the parents were given a PHCHR and short instructions on how it was expected to be used. MAIN OUTCOME MEASURES: Parent-professional collaboration, healthcare utilization, and parents' knowledge about child health matters and illness. RESULTS: Some 73% of the intervention group used the PHCHR regularly when visiting the health centres, 79% reported that their own writing in the record was helpful, and 92% favoured the PHCHR being permanently adopted. Use of the record did not influence the utilization of healthcare services, parents' knowledge of their child's health, or parents' satisfaction with information or communication with professionals. CONCLUSIONS: The PHCHR was well accepted by parents and professionals but it had no effects on collaboration, healthcare utilization, or other measures that could justify the costs of introducing the record into common use. Therefore, the introduction of a parent-held child health record in Norway is being postponed.     

Medicines for chronic illness at school: experiences and concerns of young people and their parents

Background and objective: Access to medicines by young people with chronic conditions during the school day and suitable environments and support in the administration of a range of dosage forms may be required for optimal clinical management. Whilst Government policy emphasizes that children and young people with chronic illness should be able to lead as normal lives as possible, there is only limited evidence on the experiences and concerns of young people and their parents regarding the use of medicines at school and the impact on school life. The objective of this study was to examine the experiences and concerns of young people with chronic conditions, and their parents/carers, in managing medication at school. Methods: Data were gathered in audio‐recorded face‐to‐face semi‐structured interviews with 27 young people (5–18 years) and their parents attending out‐patient clinics at a major London teaching hospital. Open‐ended questions provided an opportunity for participants to describe experiences and views in the context of their activities, priorities and concerns and enabled a qualitative analysis. Results and discussion: The findings indicated that storage and access of medicines did not present major problems for young people receiving regular medication. However, those receiving medication on a ‘when required’ basis reported barriers to access. The most common concern regarding taking medication was lack of privacy, which sometimes led to non‐adherence. Adverse effects of medication were highlighted as a cause of both non‐adherence and poorer school performance. Extracurricular activities such as school trips were not viewed as presenting a problem by those who were interviewed. However, this was often because young people and their families devised their own strategies regarding the use of medicines that did not depend on the input of staff. There was wide variation in responses about the support young people received from school staff, with evidence of helpful and unhelpful practice. The potential benefits of liaison between schools and health professionals to assist schools in their support of students with their medicines were highlighted. Conclusion: This study has identified medication‐related issues from the perspective of young people and their parents, indicating ways in which their needs might be served more sensitively and effectively.     

Continuity of care and caring: what matters to parents of children with life-threatening conditions

This article presents parents' perceptions regarding continuity and coordination of care of children with life-threatening conditions as revealed through qualitative analysis of interviews with 36 bereaved parents of children who died after receiving care at three geographically dispersed teaching hospitals in the United States. Parental concerns about and experience of continuity of care were framed primarily in terms of the quality and continuity of relationships with healthcare providers throughout a child's illness and death and the continuity and consistency of information that they received about their child's condition and care. Continuity in relationships was perceived as key in ensuring that clinicians knew and cared about the child and parents, which in turn contributed to parents' confidence that their child would receive the best possible care. In the absence of continuous, caring relationships with staff, parents reported frustration, hypervigilance, and mistrust about the quality of care that their child received.     

Caring for adoptive families: lessons in communication

PURPOSE: To describe the experiences of families whose adopted children were hospitalized and to compare those experiences to the experiences of families of hospitalized biological children. METHOD: The parents of 10 adopted and 55 biological children participated in the study in which the source and intensity of stress for parents and the level of distress demonstrated by the children during their hospitalization were measured and compared. RESULTS: Adopted children hospitalized for the first time were significantly more distressed during hospitalization than biological children hospitalized for the first time. Adoptive parents experienced significantly more stress than biological parents related to how staff communicated with them about their child's illness. Concerns identified by several adoptive families included difficulties associated with having limited information about their child's family medical history and concerns about attachment issues. CONCLUSIONS: Health care providers need to be aware of adoptive parents' concerns about their child's response to hospitalization, attachment issues, and limited family medical history. The quality of communication with adoptive parents is especially important.     

Parents with first time major depression: perceptions of social support for themselves and their children

The aim of this study was to ascertain the perceptions of parents, with first time major depression, regarding the social support for themselves and their children. Eighteen parents, with children under the age of 19, were interviewed on admission to an inpatient unit and of these 16 were followed up 1 year later. In addition, the severity of parents' depression and their functional status was measured. The results showed that although the parents did regain their mental health and functional capacity to a certain extent, they nevertheless remained in a vulnerable position, increasing the strain on the whole family. The parents' and their children's social support was low and came mostly from outside the family. The parents were worried about their children, due to problems related to the depressive episode as well as ordinary teenage rebellion. Important questions concerned practical problems such as whether there was someone to take care of the children if the parent is incapable of doing so. There were also concerns pertaining to how the changed family situation might interfere with the child's natural development or whether depression was a question of heredity. This highlights the need to investigate the importance of social support for the family as a whole when one of them suffers from depression. There is a need for improved treatment of parental depression to reduce symptoms such as decreased functional status that may impair parenting. The study also emphasises the need for healthcare practitioners to assess multiple aspects of social support so that care planning will target all relevant domains.     

Medical privacy and its value for patients

OBJECTIVES: To review privacy issues of medical information and current legal guidelines. DATA SOURCES: Government regulations and reports. CONCLUSIONS: Patients must have trust and confidence that the health care system will safeguard their health information and that it will not be used to discriminate against them through insurance or employment. IMPLICATIONS FOR NURSING PRACTICE: Health care professionals must be sensitive to the privacy needs of patients during the collection and storage of data, the access to information, and the sharing of patient information.     

Parents' perspectives of health-care delivery to their chronically ill children during school

This study sought to identify parents' perspectives about issues relating to the provision of health care to their chronically ill children while they are at school. A survey of parents with school-aged children attending the paediatric subspecialty outpatients clinic in a large teaching hospital was designed to collect both qualitative and quantitative data about this topic. Findings included that 48% (n =161) of parents participating in the study said their child required some form of care or attention while at school. Highest scoring areas of need included supervision of meals (36%), administering insulin (19%), and administering nebulizers/puffers (19%). In addition, 75% of parents with children requiring health care while in school said that special knowledge and skill was required to deliver this care; 56% of these parents did not feel that teachers had the knowledge that would enable them too look after their chronically ill child during school hours.     

Parents' experiences of collaboration with community healthcare professionals

Over the last decades there has been a reduction in the number of institutional beds in psychiatric care in Norway. This has led to more psychiatric patients being dependent on community care and consequently an increased need for collaboration with the parents of these patients. In most cases parents are an important source of support in helping patients manage their everyday life. The aim of this study was to explore how parents of adult psychiatric patients experience collaboration with health professionals in the community healthcare services. The data collection in this study is based on 12 interviews with six parents, and a qualitative analysis method was employed. Four themes emerged: (1) communication and relationship between parents and health professionals; (2) lack of information; (3) parents' participation in the treatment of their son or daughter; and (4) the need for guidance and support. It was reported that health professionals are suspicious of parental involvement and often refuse to allow them to participate in the care. Further research on parents' experiences of collaboration is necessary. The value of parents as an important source of support can be enhanced by means of increased collaboration.     

Effects of paediatric limb loss on healthcare utilisation,schooling and parental labour supply

Purpose.?To explore the impact of childhood limb loss on families in terms of healthcare utilisation, schooling and parental labour supply.

Methods.?Data were obtained from a cross-sectional, retrospective pilot survey of 123 parents or caregivers of children with limb loss selected randomly after stratification by aetiology (i.e. trauma, malignancy and congenital limb deficiency) from among eligible families identified by the Amputee Coalition of America. Healthcare utilisation, school (child) and labour market (parents) participation were examined.

Results.?Children with limb loss use health services frequently and miss school for limb loss-related concerns. Over half of all parents adjusted their work participation in response to their child's limb loss. The use of prostheses may increase direct and indirect costs of limb loss. Children with acquired limb loss (amputation following trauma or cancer) were more likely than those with a congenital limb deficiency to use a prosthesis.

Conclusions.?Our data suggest that the impact of limb loss on families of affected children may include substantial costs, particularly when school and work effects are taken into account. Further research is needed to identify the full household- and societal-level costs of childhood limb loss and suggest interventions to reduce the burden experienced by families.     

Parents' experiences of asthma: process from chaos to coping

The aim of the present qualitative study was to describe nine parents' everyday experiences of living with a child suffering from asthma. Data were collected by means of in-depth interviews and phenomenological content analysis. Four main themes emerged: feelings of uncertainty, helplessness and guilt; the need for support and help from healthcare professionals; adaptation to everyday life; and the development of coping strategies. In addition, two subthemes; trying out and seeking information, emerged. Trying out was found to be an important strategy for parents in managing the illness. In encounters with healthcare professionals, parents felt that they were not respected and that their competence was questioned. In conclusion, this study emphasizes the importance of a mutual dialogue between healthcare professionals and parents to enable the parents to develop the competence necessary to care for their child.     

Evaluation of a school re-entry nursing intervention for children with cancer

A retrospective qualitative design was used to identify and compare the concerns parents, teachers, and children have regarding school re-entry after a cancer diagnosis and to describe the impact of a school re-entry program on parents', teachers', and children's concerns. Audiotaped, semistructured interviews were obtained from a convenience sample of 10 children with cancer (ages 5 to 13 years), 10 mothers, and nine teachers. All participants were positive about the school re-entry nursing intervention, which is described. Results of content analyses indicate that before the intervention, mothers were concerned about their child's safety and peer teasing; teachers were concerned about their own knowledge and peers' adjustment, and children were concerned with keeping up with school activities. After the intervention, mothers were less concerned about peer teasing but continued to be worried about their child's safety in the school setting and began to have concerns about academic progress and physical stamina; teachers reported increased concerns for the child's safety and academic progress, and a desire to return to normal routines in the classroom; and the children continued to have concerns with maintaining academic and physical progress. Clinical and research implications are discussed.     

Ethics, Policy, and Educational Issues in Genetic Testing

PURPOSE: Analyze ethics, public policy, and education issues that arise in the United States (US) and the United Kingdom (UK) when genomic information acquired as a result of genetic testing is introduced into healthcare services. ORGANIZING CONSTRUCT: Priorities in the Ethical, Legal, and Social Issues Research Program include privacy, integration of genetic services into clinical health care, and educational preparation of the nursing workforce. These constructs are used to examine health policies in the US and UK, and professional interactions of individuals and families with healthcare providers. FINDINGS: Individual, family, and societal goals may conflict with current healthcare practices and policies when genetic testing is done. Current health policies do not fully address these concerns. Unresolved issues include protection of privacy of individuals while considering genetic information needs of family members, determination of appropriate monitoring of genetic tests, addressing genetic healthcare discrepancies, and assuring appropriate nursing workforce preparation. CONCLUSIONS: Introduction of genetic testing into health care requires that providers are knowledgeable regarding ethical, policy, and practice issues in order to minimize risk for harm, protect the rights of individuals and families, and consider societal context in the management of genetic test results. Understanding of these issues is a component of genetic nursing competency that must be addressed at all levels of nursing education.     

The impact of genetic information on policy and clinical practice

This article discusses genetics-related policy issues that have an impact on health care systems, health care providers, and their patients: privacy, mass screening, family screening, and knowledge dissemination. Access, cost, and ethical implications are important discussant points for each of these genetic-related policy issues. Embedded in the issue of privacy are concerns of insurability, confidentiality, and discrimination. The public health policy implications related to mass screening programs include efficacy of the screening tests, availability of primary and secondary interventions, access, costs, and program evaluation. Policy issues for family screening are similar to mass screening, with added concerns about privacy and availability of adequate resources, including health care providers and counselors trained in genetics. Knowledge dissemination is critical to maintaining currency of clinical information and applications of genetic technologies and treatments. As genetic information expands, the need for knowledge dissemination will increase. The importance of advanced practice nurses' involvement in these policy issues is discussed.     

School re-entry for the child with chronic illness: parent and school personnel perceptions

PURPOSE: The number of children returning to school with chronic illnesses has increased during the past decade. Studies have suggested that school personnel are not well informed about chronic illness, receive little or no training, and feel unprepared to deal with these children in the classroom. Few studies address the concerns of parents when their children return to school. The purpose of the study was to identify and describe specific concerns and educational needs of parents and school personnel. METHOD: Telephone interviews were conducted with 21 parents. Twenty-four questionnaires were completed by school personnel, social workers, principals, psychologists, teachers, and school nurses. Content analysis was used to explore the data for recurrent themes. FINDINGS: Five areas of concern were evident in the survey responses of parents and school personnel: (a) how parents informed the school about the child's illness (breaking the news), (b) the processes related to the child's actual re-entry into the school (making the transition), (c) the ongoing monitoring of the child's health status both parents and teachers felt necessary (watching the child), (d) the need to teach school personnel about unexpected health problems (teaching the teachers), and (e) school personnel's expectations for the child (working with the child). Specific examples of positive and negative experiences related to these themes are provided.     

Parents' views about infant pain in neonatal intensive care

OBJECTIVE: The purpose of this study was to describe parents' perceptions and feelings about their infant's pain experience and pain care in the neonatal intensive care unit. METHOD: Thematic content analysis was used to encode the qualitative information contained in parents' written comments on a questionnaire about their views on infant pain and pain care. The questionnaire was completed by 257 parents from 9 neonatal units in the United Kingdom (n = 196) and 2 neonatal units in the United States (n = 61). RESULTS: Parents' comments indicated that they saw medical procedures as the major source of their infant's pain, wanted more information, and generally desired more involvement in this aspect of their infant's care. Parents' comments indicated that their infant's pain affected them emotionally and that they worried about their future relationship with their infant. Parents also articulated specific ways in which health care professionals could assist them and their infants in coping with neonatal intensive care unit-related pain. DISCUSSION: The findings from this study expand knowledge about how parents understand and respond to the difficult situation in which their newborn infant is subjected to essential but painful procedures. The findings provide direction for research and clinical practice interventions aimed at: 1) helping parents to gain knowledge and correct their misperceptions; 2) engaging parents in meaningful dialog about their concerns and preferences for involvement; and 3) helping parents to develop effective coping strategies to reduce psychologic distress related to their infant's pain.     

The use of complementary and alternative medicine among pediatric patients

The overall objective of this research was to obtain information through the use of open-ended interviews, about the diagnosis and treatment of children who had cancer. The interviews, completed with 29 parents whose children had been diagnosed with cancer within the previous 5-year period, were designed to allow mothers and fathers to share their experiences about childhood cancer. From this process, many salient issues were identified by the interviewed parents, one of these issues being that of complementary and alternative medicine (CAM) use among children being treated for cancer. Analysis of the CAM theme resulted in the identification of the following subthemes: (1) parents' opposition to CAM utilization; (2) parents' support of CAM use with their children with cancer; and (3) physicians' views of CAM as perceived by parents. Implications for the use or nonuse of CAM among pediatric populations will be discussed.