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.     

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' support and satisfaction with their child's postoperative care

It is recognized that parents' presence during their child's hospitalization is of benefit to the parents and the child. However, the level of parental involvement in their child's care may be influenced by many factors, such as the amount of support nurses provide for parents. This article reports on two themes from the findings of a larger study on parental involvement in children's postoperative pain management - parental support and parents' satisfaction with their child's postoperative pain management. The aim of the larger study was to explore both nurses' and parents' perceptions of parental involvement in their child's postoperative pain management. The methods used were both qualitative and quantitative. The qualitative method of phenomenology was used to guide 20 nurse and 20 parent interviews. Quantitative methods involved surveying the nurses and parents on their perceptions of how supportive the nurses were towards the parents. The charts of 20 children were reviewed for pain-related data. This article reports on the issues of parent support from the results of the survey, and on satisfaction relating to their child's postoperative pain management from the parent interviews. The findings demonstrated that nurses perceived that parents were receiving more support from them than that which parents felt they were receiving. Parents were more satisfied with their child's pain management and children received more analgesia when they were cared for by a lower grade nurse.     

一位淋巴癌患儿父母亲对其教养态度和行为改变之探讨

探讨一个癌症家庭因孩子罹患淋巴癌后其父母对其教养态度及行为改变的因素。笔者于某医学中心儿科病房实习期间，观察整个家庭于患儿住院期间父母亲与患儿的互动模式。结果发现，罹患癌症患儿父母的教养态度和行为，会因患儿罹患癌症的疾病而有“父母亲准许患儿对父母生气”、“父母亲较会宠爱患儿”及“父母亲无法制定一套应遵守的生活规定来教育患儿”等3点明显的状况出现在此次照护患儿个案的家庭中；此篇文章研究结果，期可作为儿科病房护理人员在临床上照护此类癌症患儿以及未来发展父母亲教养患儿态度的架构之参考。     

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.     

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.     

The experience of stress in parents of children hospitalized with long-term disabilities

This paper discusses parents' perceptions of their stress when their children are hospitalized with long-term disabilities. The study used a qualitative method. Data were collected with 40 parents through in-hospital interviews, and were analysed using the method of constant, comparative analysis. Parents' own interpretation of their stress experience is considered in relation to their perception of their role. The data suggest that the hospitalization of a child requires parents to make changes in their usual parenting role. In describing the nature of the changes required, parents identified the need to understand the illness experience; become familiar with the hospital environment; adapt to their changing relationship with the child and other family members; and negotiate with health professionals about their child's care. Verbatim accounts are used in this paper to illustrate parents' interpretations of their hospital experience. Parents perceive their role in their hospitalized child's care differently than health professionals do, and it would appear that much parental stress is attributable to the 'space' between health care workers' understanding of parents' experience, and parents' own comprehension. If nurses understood parents' own perception of their hospital-related stress better, more effective nursing care could be developed. Further research is needed in this important area.     

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.     

Mothers' perceptions of parenting children with disabilities

PURPOSE: To describe how mothers of children with physical disabilities identified their parenting strengths and weaknesses, encouraged their child's social skills and learning, nurtured and disciplined their child, and perceived their parenting successes and problems. DESIGN: Grounded theory. METHODS: Focused telephone interviews were conducted with mothers of preschool to elementary schoolage children with mild to moderate physical disabilities. The mothers were asked what they were doing well and "not well" in parenting their disabled child, their difficulties, their child's preparation for other children's questions/teasing, their encouragement of social skills and learning, and their discipline and nurturance. RESULTS: The theory that emerged from the data was parental straddling, which occurred on three levels. Parents were living in the past and the present, striving to view their child as "normal" when, in fact, the child was disabled, and were simultaneously dealing with their own and their child's issues and feelings. CLINICAL IMPLICATIONS: Nurses need to understand the complexity of the parents' straddling their roles and tasks. They can provide needed emotional support by allowing parents to express their fears and feelings in an atmosphere of nonjudgmental acceptance. Nurses can prepare parents for anticipated grief work, reassure them that their experiences are expected and normal, reinforce their use of normalization strategies, and help them separate their own from their child's issues and feelings.     

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.     

Parents' Wishes and Expectations for Children With Chronic Conditions

This qualitative study investigated the wishes and expectations that parents had for their children with chronic physical health conditions. Participants included parents of 21 African American, 20 Hispanic, and 22 European American children. Results indicated that many parents' wishes were specifically related to the child's chronic condition, including that the condition would not exist, would be cured, or would improve. Other wishes focused on the psychosocial well-being of the child, independent living skills, education, having a family, behavioral issues, and religion. Although all of the wishes had a positive connotation, some of the expectations were positive and others were negative. Expectations were about the child's condition, the child's psychosocial well-being, independent living skills, education, and social concerns. Two characteristics of the chronic conditions, mental retardation and mobility impairment, affected the types of wishes that parents had. Differences among the three ethnocultural groups were noted in two types of wishes, education and behavioral issues, as well as in parents' expectations about social problems.     

The needs, concerns and coping of mothers of children with cystic fibrosis

The questionnaire CICI:PQ for measuring needs, concerns and coping of parents of chronically ill children was mailed to 85 families with children with cystic fibrosis (CF). Some questions about the parents' experiences of the health care system were also included. Fifty-four per cent responded--in all cases but two the mothers. More than half of the mothers wanted help with or opportunities to discuss the state of health and the emotional development of the child and dietary issues. Many of them were concerned about the child's future. Shortage of time was another problem. The coping strategies used when having problems with the child were partly different from those used when problems arose with the partly different from those used when problems arose with the spouse. Most mothers were satisfied with the hospital care and the CF paediatrician. They wanted further support from the physiotherapist and many of them missed a CF nurse. The project illuminated many areas for further investigation.     

Parents of Children with Disabilities: Resilience, Coping, and Future Expectations

On the basis of characteristics of family resilience, the study examined the perspectives of parents of children with an intellectual, physical, or learning disability. Thirty-two parents were interviewed as to past, present, and the modes of coping. The questions examined various aspects of family ecology domains: parents' responses to the child's diagnosis; patterns of adjustment; family support and services used by parents; and parents' feelings and future expectations. Although, it was found that most parents had to make changes in their social life and expressed high levels of frustration and dissatisfaction, many try to maintain their routine life. The majority expressed the need for a strong belief in the child and in the child's future, an optimistic outlook, and a realistic view and acceptance of the disability. The study highlighted the importance of social resources and support, and the need for effective programs of intervention.     

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.     

Out-of-home placement of children with intellectual disability: Israeli-born parents vs. new immigrants from the ex-USSR

Although the policy of deinstitutionalization encourages parents to raise a child with development disability at home, professionals are becoming increasingly aware of these parents' care-giving roles. Immigrant parents from the ex-USSR who have children with developmental disabilities are potential clients for placement, but to date, the tendency in Israel to out-of-home placement by immigrant parents, compared with Israeli-born parents, has not been studied. The placement variables were examined as a function of place of birth, emotional stress and social support. The sample was 100 parents who have children aged 6-21 years with mild to moderate mental retardation (according to the American Association on Mental Retardation definition) who live at home. Fifty parents were immigrants (arrived in Israel after 1990) and 50 were Israeli-born. They live in the region of Haifa and the north of Israel. The following measurements were carried out: (1) Demographic Questionnaire for data such as place of birth, age, socioeconomic status, etc., (2) Questionnaire of Resources and Stress, (3) Family Support Scale and (4) Out-of-Home Placement Questionnaire. The results showed that parents' readiness to apply for out-of-home placement proved to be related to their stress level and child's age, regardless of their origin (immigrants or Israeli-born) and regardless of social support resources. The older the children with mental retardation and the higher the stress levels felt by their parents, the higher was these parents' potential to apply for out-of-home placement. Immigrant parents tended to report a significantly higher level of stress than Israeli-born parents. No difference was found in the social support resources available to both research groups. Immigrant parents' stress level was higher as the child's mental retardation level was more moderate and their time in Israel was longer. Stress level among Israeli-born parents was higher among those who were religious, were of lower socioeconomic status and/or when, in addition to the mental retardation, the child suffered from other medical problems. In conclusion, families with children with mental retardation should be referred to services in an integrative way, regardless of the origin of the children's parents. Professionals must increase their own awareness of parents' level of stress and its impact on their readiness to apply for out-of-home placement. Recommendations for practical work and for future researches are made.     

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.     

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.     

Transition experience of parents caring of children with epilepsy: a phenomenological study

BACKGROUND: Families who have a child with epilepsy show a significant impact on both the dynamics of the child's development and family systems in a social context. Knowledge of a family's lived experience in dealing with the early stages of their child's illness will provide a deeper understanding of their life and coping process. Most studies have focused on the child's developmental issues, parental attitudes, coping strategies and the child's adjustment. In order to assist families to cope with the early stage of having a child with epilepsy, nurses need to understand the nature of a family's lived experience. OBJECTIVE: The purpose of this study was to investigate the essence of the family health-illness transition experience from the parental perspective when a child is afflicted with epilepsy. DESIGN: Colaizzi's phenomenological approach was used. In-depth interviews were conducted with ten couples with regard to the first one and a half years after the diagnosis of epilepsy. SETTINGS AND PARTICIPANTS: Ten couples from two medical centers in Taiwan participated in the study. The age range of the children at diagnosis was 0.2-4.3 years. METHODS: Open attitude and imaginative variation techniques were used to investigate the meanings of the experience. This study used Colaizzi's method with both destructured and restructured analysis. Lincoln and Guba's trustworthiness criteria were employed to evaluate methodological rigor. RESULTS: Three concepts emerged: parents' psychological reactions, parental coping patterns and family resources. The parents' psychological reaction was that of being emotionally traumatized and physically exhausted. Parental coping patterns were vigilant parenting and aimed at reframing roles, facing the social challenge and assisting the child's social re-integration. The nature of family resources was family resiliency. The findings provide a scientific knowledge base for nurses when assisting parents and children during the health to illness transitional phase following a diagnosis of epilepsy.     

Coping and social support of parents with a diabetic child

The purpose of this study is to describe and understand the parental coping and the social support received by the parents of diabetic children. The parental coping process was followed for a 4-week period after the diagnosis of diabetes. The parents of two girls, whose diabetes was diagnosed in early childhood, served as study subjects. Data were collected by interviewing and observing the parents over four separate periods. The data were analyzed by the time series and content analysis methods. Six phases of parental coping were identified: disbelief, lack of information and guilt, learning to care, normalization, uncertainty and reorganization. In the different phases of parental coping, the parents' experience of stress, coping strategies and sense of control varied. In the phase of disbelief, the parents tried to reject the child's diabetes by questioning the diagnosis. The initial information given to the parents regarding their child's diabetes proved to be important for parental coping. In the phase of lack of information and guilt, the parents sought reasons for their child's diabetes and felt guilty about it. As coping responses, the parents sought support from each other and from people who had experienced the same. In the learning to care phase, they recognized the demands caused by diabetes and took responsibility for the child's care. The parents appreciated supervision based on their problems. In the normalization phase, the parents prepared to return home with the diabetic child. Getting back to normal life was one of the most effective parental coping responses. In the uncertainty phase, the care to be given to the diabetic child changed the daily routines of the family. In the reorganization phase, the parents adapted to the diagnosis of diabetes and to the care of their diabetic child. The parents felt that the life of the family normalized and was able to be controlled.