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.     

Parental grieving and perceptions regarding health care professionals' interventions.

The death of a neonate, infant, or child is a tragedy that greatly impacts on many individuals' lives. Nurses and other health-care professionals provide care for not only the dying child but also the grieving parents and families. It is imperative that health care professionals are cognizant of the components and intensity of parental grieving and the critical role that they must assume in supporting bereaved parents prior to, at the time of, and after the child's death. The purpose of this study was to measure the intensity of parental grieving and collect information from bereaved parents regarding their perception of health care professionals' interventions. The results indicated that bereaved parents' intensity of grieving scores were generally higher than those reported on the TRIG norms. In response to The Bereavement Questionnaire, they were able to identify what health care professionals did or said that was helpful or unhelpful before, during, and after their child's death.     

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.     

A descriptive study of the extent to which self-perceived needs of parents are met in paediatric units in Iceland

The purpose of this study was to identify the extent to which parents of 2-12-year-old hospitalized children perceive their needs to be met in paediatric units, what variables influence parents' perception, and whether parents need help from the hospital to meet their needs. Parents perceived that most of their needs were met fully or to some extent. The need to be able to stay with the child 24 h a day was perceived as fully met by all parents. Needs perceived as important but poorly met were as follows: written information about the child's health status, information about financial assistance and follow-up after discharge. Independent variables identified as being related to the extent to which individual needs were met were as follows: parents' age (p < or = 0.05), distance between home and hospital (p < or = 0.05), parents' education (p < or = 0.05), length of hospital stay (p < or = 0.01) and severity of child's illness (p < or = 0.01). Most parents perceived that they needed help from the hospital to meet their needs. These findings call for identification of effective interventions to meet parents' needs.     

Parental views on participation in their child's pain relief measures and recommendations to health care providers

The purpose of this study was to describe parental views on the factors influencing participation in their 8- to 12-year-old hospitalized child's surgical pain relief measures, and the recommendations to health care providers concerning alleviation of their child's pain. The data were collected by a questionnaire completed by parents (N = 192) whose child was hospitalized in one of the pediatric surgical wards in the five university hospitals of Finland. Results revealed that most of the parents (98%) agreed to having adequate opportunities to participate in their child's care according to their personal preferences; however, only 23% of the parents totally agreed that they had a clearly defined role in their child's pain relief measures. Feelings such as concern, fear, helplessness, anxiety, and depression were commonly experienced by the parents during their child's hospitalization. Most of the parents' recommendations concerned the topic of providing information. The findings of this study have implications for nursing practice.     

Chronic grief: experiences of working parents of children with chronic illness

Parents of children with chronic illness experience multiple stressors associated with their numerous roles. For parents who are working full time and caring for a child with chronic illness, the stressors related to managing work and caring responsibilities are magnified. Although the impact of caring for a child with chronic illness has been widely investigated, the literature reveals a paucity of research on the experiences of parents who are also in full time employment. This paper shares qualitative findings of a study involving interviews of twelve parents who were working full time while caring for a child with chronic illness. Data was collected through in-depth semi structured interviews and thematic analysis was then used to develop and categorise themes. Two intertwined themes are reported: (1) grief and (2) dealing with professionals. In this study, parents revealed the chronic grief they experienced in relation to their child's condition, which often recurred at various stages of the child's illness. The child's initial diagnosis was found to be the most stressful part of the grieving process, with most feeling their voices as parents were not being heard or valued by health professionals at this time. This affected parents' confidence in the health care system and triggered the re-emergence of grief, aggravating an already stressful situation. The findings illustrate that the grief experienced by these parents can be exacerbated by their dealings with health professionals. Implications for various health professionals are drawn from the findings in order to highlight avenues where guidance and support can be provided to these parents.     

Parents' perceptions of children with chronic illness: a study of immigrant Chinese families

This article describes and discusses parents' perceptions of a children with a long-term health problems in 16 Chinese immigrant families and 15 Euro-Canadian families. These data are part of a larger study, the purpose of which was to explore the illness experience and help-seeking behavior of these families. The data show that the Euro-Canadian parents see the illness or disability as affecting only particular aspects of the child's life, while the child as a whole is seen as normal. The Chinese parents more frequently describe the illness as having global effects on many aspects of the child's present and future life. These differences in perception are discussed in relation to literature about Chinese culture and the experience of immigration. It is suggested that how a parent perceives a child's illness affects how a parent cares for the child and interacts with health care providers.     

The nurse parent support tool

This report describes the development of an instrument, the Nurse-Parent Support Tool (NPST) designed to measure parents' perception of nursing support during their child's hospitalization. The NPST was based on the Nurse Parent Support Model developed from House's conceptualizations of four domains of support. Thus, the 21-item NPST assesses four dimensions of support: (1) supportive communication and provision of information related to the child's illness, treatments, care, and related issues; (2) parental esteem support focused on respecting, enhancing, and supporting the parental role; (3) emotional support to help the parents cope with their own emotional responses and needs related to the child's illness; and (4) caregiving support involving the quality of care provided to the child. Strong support for the content validity of the NPST derives from the steps used in constructing the instrument. This includes use of a conceptual framework, generating items from the literature, using data from interviews with parents of hospitalized children, and pilot testing with parents and experts. Factor analysis provides support for the underlying construct and significant correlations with another instrument measuring a similar construct provides support for the concurrent validity. The internal consistency reliability is very high. The NPST holds promise for use in nursing research and quality improvement programs in pediatric and neonatal in-patient settings.     

Quality of life reporting by parent-child dyads in Japan, as grouped by depressive status

When children are unable to assess their own health-related quality of life (HRQOL), their parents can provide useful proxy information; however, minimal agreement between the two groups on this issue has been reported in some situations. In order to clarify the degree of accordance between the self-reports of children and the proxy reports of their parents on the former's HRQOL, 679 parent-child dyads, as grouped by their depressive status, were assessed by the Pediatric Quality of Life Inventory (PedsQL). It was found that the self-reporting of the children differed significantly between those who were healthy and those who had depressive symptoms, whereas the proxy-reporting of the parents did not vary with their child's mental condition. However, the latter's reports did reveal notable dissimilarities between the healthy parents and those with depressive symptoms. The results indicated that the parents' perception of their child's HRQOL differed with their child's own perception and that the parents' perceptions were affected by their mental condition. Medical providers should assess both the child's and the parents' evaluations of the child's HRQOL, as the views of the parents could determine the use of health services and the making of decisions in clinical settings.     

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.     

Developing information leaflets for parents of children with cancer

Information aids parents' understanding of and adjustment to their child's disease and treatment, and their ability to care for their child safely at home. This article describes the development of a leaflet on conditions, treatments, side effects, management advice and contacts for parents of children receiving treatment for cancer using an Ommaya reservoir. Health professionals should be aware of developments in health care, to ensure that current evidence-based information for families is provided.     

Touchpoints: changing the face of pediatric nurse practitioner education

Touchpoints is an interdisciplinary relational model of healthcare primarily used with parents and young children. The underlying premise of the Touchpoints approach is to support the parent/child relationship during the health encounter by enhancing parents' efforts to optimize their child's physical and psychological development. Nurse practitioners who use this approach in practice find they are able to connect quickly to the parents' most urgent concerns for their child. Our experience has been that a pediatric nurse practitioner program that uses Touchpoints as the underlying framework can assist students in achieving a holistic view of families by focusing the curriculum more directly on development and relationships. Students learn that building a relationship with parents, and joining them in the care of their child, produces an atmosphere in the health encounter of mutual respect and trust. Parents leave the encounter feeling satisfied their concern for their child has been heard and questions have been seriously discussed; students leave feeling competent and valued by their patients. Touchpoints provides a model for teaching and demonstrating the development of interpersonal relationships by using the language of the child's behavior.     

Management of childhood constipation: parents' experiences

BACKGROUND: Constipation in childhood is common and places a burden on child health services. Whilst constipation can have a variety of causes, for most children it is usually non-organic and requires limited intervention. It has been suggested that health professionals can resent consultations for such a common problem, believing them to be inappropriate. However, they can underestimate the impact of this condition, leading to adverse clinical effects, as well as parental dissatisfaction. Little research has explored parents' experiences of consulting health professionals about the management of childhood constipation. AIM: To explore parents' experiences of consulting health professionals about management of childhood constipation and to use the findings to inform more effective therapeutic encounters when responding to parental concerns. METHODS: A phenomenological approach was adopted, using in-depth interviews with parents of 14 children receiving health interventions for constipation. FINDINGS: Six themes emerged from analysis including: 'enduring and extreme constipation', which reflected the substantial and sustained impact of the child's constipation; 'dismissed and fobbed off', which captured parents' feelings that their concerns were frequently dismissed by health professionals; 'asserting the need for action', a perception that they had reached a point at which they had to demand some intervention; and 'validation and acknowledgement', which reflected acknowledgment that, finally, their concerns for their child had been taken seriously and acted on. DISCUSSION: The findings indicate a failure by some health professionals to appreciate fully the significance of childhood constipation, thereby appearing to be unconcerned and insensitive to the needs of child and family. The impact of this is a potential loss of trust in health professionals by parents, which can then have implications for how they perceive and access health services for management of this common childhood problem. The findings offer an insight into parental experiences and indicate the need for a more sensitive approach during health consultations.     

Parental emotional responses to their child's pain: the role of dispositional empathy and catastrophizing about their child's pain.

Little is known about how a child's experience of pain affects his or her parents. Using a vignette methodology, this study investigated the emotional responses of parents who were asked to imagine different painful situations that their child might experience. A sample of 650 parents of school children (325 mothers; 325 fathers) read 8 short stories/vignettes about their child, which varied in terms of type of situation (pain vs other stressful situation), intensity (high vs low), and frequency of occurrence (high vs low). The role of individual differences in parental catastrophizing about their child's pain, catastrophizing about their own pain, dispositional empathy, and gender was also investigated. Parents' dispositional empathy was found to have an impact on parental distress and concern for their child. Catastrophizing about their child's pain had a unique contribution to parents' emotional responses to the vignettes describing their child in pain, beyond the influence of other variables. The impact of parental catastrophizing about their child's pain was most pronounced for parental distress, probably reflecting the high threat value that they attribute to their child's pain. The findings are discussed within recent models of empathy and pain, delineating possible relationships with parents' behavioral responses to their child's pain. PERSPECTIVE: This vignette study found preliminary evidence for the importance of parent characteristics, beyond situational characteristics, in parental emotional responses to their child's pain. The findings provide indications for the processes implied in parental helping behavior.     

The child with diabetes mellitus

Parents, other family members, and health care professionals play an important role in the life of a child who has diabetes. The parents especially are constantly called upon to help make judgments regarding a child's diabetes management. As a child gets older, parents do not make as many of these judgments directly but are available to help the child make his own judgments. Even when a child starts to gain more independence and take over more aspects of his diabetes management, the need for ever-present support is still there. It may not be apparent at times but parents, other family members, and health care professionals must remember that the support is always needed.     

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.     

Parents' perceptions of their child's acute pain experience

Painful procedures, experienced by many pediatric patients early in their admission, have been identified by parents in our clinical practice as a source of stress. The purpose of this study was to examine parents' perceptions and concerns about their child's acute pain experience. A convenience sample of 71 parents of 62 children was given a questionnaire that focused on the child's pain intensity, the behaviors that indicated the child was in pain, and the parents' preparation for and involvement in the child's pain experience. The majority of parents were asking for more information about and greater participation in procedures that caused their child pain.     

Parents' roles in using non-pharmacological methods in their child's postoperative pain alleviation

Increasingly nowadays, parents participate more fully in the care of their hospitalized children. The purpose of this study was to describe parents' utilization of selected non-pharmacological methods in relieving their hospitalized child's (aged 8-12 years) postoperative pain, and factors related to this function. Data were collected by a questionnaire survey completed by parents (n=192) with a child hospitalized on a paediatric surgical ward in the five university hospitals of Finland. The response rate was 90%. Results indicated that non-pharmacological methods, such as emotional support and helping with daily activities, were well utilized whereas cognitive-behavioural and physical methods were less frequently used strategies. Certain background factors specific to the parents and their hospitalized children were significantly related to the non-pharmacological methods used by the parents. The hospitalized child's gender, the time of the surgical procedure, and the parents' assessments of their child's pain intensity, were especially significantly related to many of these strategies. The findings of this study could be used in clinical practice to improve guidance provided to parents regarding interventions for children's pain relief.