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.     

Concepts of pain in preschoolers and children of early school age and their parents after painful interventions during hospitalization

Subject of the present study are individual pain concepts of preschoolers and children of early school age. Their parents' concepts of pain were considered as well. In a qualitative study interviews were performed with 9 children and their parents in a children's hospital to investigate their individual concepts of pain, their methods of pain assessment, and self-initiated strategies of pain alleviation. Already 4-6 year old children are able to remember painful experiences and to communicate about pain. Strategies of pain alleviation used by children are distraction methods as well as methods of physical relief. The child's parents play an important role concerning pain assessment and coping. The parents' presence is also very important to communicate the child's needs to nurses. Parents want nurses to consider physiological as well as behavioral aspects in the assessment of the child's pain. Besides, they expect nurses to have competences concerning prevention, assessment and alleviation of pain. To perform a trustful relationship to children and parents, more intensified counselling by nurses seems necessary.     

Factors influencing satisfaction and well-being among parents of congenital heart disease children: development of a conceptual model based on the literature review

Aim and method: The treatment and management of congenital heart disease (CHD) has improved dramatically over the past 25 years, necessitating re-evaluation of satisfaction with care and well-being among CHD children and their parents (PCCHD). The present study reviews the published literature over the past 25 years on parental satisfaction with the paediatric care of CHD and well-being among the parents, with the specific aim of: (a) assessing the extent of psychosocial problems and grade of satisfaction with care and (b) modelling factors associated with satisfaction and well-being among the parents. Results: There is general agreement in the literature that PCCHD experience psychosocial morbidity to a higher degree than parents of children with other paediatric conditions and parents of healthy children. The research on satisfaction with care among PCCHD is not conclusive, though there is considerable agreement that a substantial proportion of PCCHD may not be receiving adequate information regarding the ill-child's condition, treatment and medical prognosis. Finally, based on the review of factors affecting satisfaction and well-being, a model is generated indicating that interactions between parental perception of CHD, psychosocial resources and social vulnerability may account for differences in well-being among PCCHD, which in turn may explain differences in satisfaction with care among them. Conclusion: A holistic approach to the care of CHD that acknowledges the role of parents' perception of CHD, need for psychosocial resources and social vulnerability in the adaptation process is recommended to improve parental satisfaction with the care of CHD.     

Barriers that delay children and young people who are dependent on mechanical ventilators from being discharged from hospital

A qualitative study of user perspectives published previously by the author found that children and young people who are dependent on ventilators spend many months and in some cases years in hospital when they no longer had a medical need or wanted to be there. This second paper is drawn from the same qualitative study and reports on the barriers that the children and young people who are dependent on ventilators, and their parents, described as important factors in preventing their discharge from hospital. Six issues were identified as significant barriers that prevented the children and young people from being discharged. These were: the attitudes of professionals; the lack of joint commissioning and accounting responsibility; general poor management both within the health service and in collaborating with other services; complex social issues; housing problems; and a general lack of auditing and outcome measures. The generalizability of the findings is unknown. However, recommendations are made in relation to the need to establish joint commissioning and accounting responsibility for care and services, and to establish outcome measures to monitor the effectiveness and appropriateness of the care and services provided.     

Parents' report of children's hospital care: what it means for your practice

PURPOSE: To determine the aspects of nursing practice that are predictive of parent satisfaction with their child's hospitalization. METHOD: A sample of 3,299 families whose children were hospitalized in a tertiary pediatric teaching hospital between 1995 and 1998 were surveyed. The survey covered their experiences during the child's hospitalization and their overall satisfaction with care. FINDINGS: Survey questions that were most strongly associated with overall satisfaction were questions about caring practices that are collaborations between nurses and parents. Satisfied parents reported nursing care that was tailored to their needs and preferences. CONCLUSIONS: These findings are consistent with Curley's model for nursing practice, which predicts better patient outcomes when nursing care is synergistic with patient characteristics.     

A pilot study using electronic communication in home healthcare: implications on parental well-being and satisfaction caring for medically fragile children

The aim of this study was to explore the impact of a nurse-established and nurse-managed electronic communication in the form of e-mail on the self-reported well-being and satisfaction of parent's caring for medically fragile and technologically dependent children. This study was conducted in a pediatric home care agency located in the southeastern region of the United States. Nineteen parents and caregivers participated in a 3-month intervention. A quasiexperimental pre- and posttest design was used. There were no significant differences in pre- and postintervention parental self-reported well-being (p < .227) or satisfaction (p < .528). Parental qualitative comments suggest positive outcomes related to well-being and satisfaction. Further investigation into the utility of e-mail communication with parents of medically fragile and technologically dependent children cared for at home is warranted.     

Parent involvement in children''s pain care: views of parents and nurses

AIM OF THE STUDY: This study investigated the views of parents and nurses about the involvement of parents in the management of their child's pain during the first 48 hours after surgery. BACKGROUND: Children's pain management has been found to be problematic and in need of improvement. Nurses are the key health care professionals with responsibility for managing children's pain. Parents can make important contributions to assessment and management of their child's pain. METHODS: Using a phenomenological approach, nurses and parents were interviewed about their perceptions of parent involvement in pain management. FINDINGS: The findings indicated that parental involvement in their child's pain management is superficial and limited in nature. Parents described a passive role in relation to their child's pain care and conveyed feelings of frustration. Only a minority of parents expressed satisfaction with their child's pain care. Nurses perceived that there was adequate involvement of parents and adequate pain management for children. CONCLUSIONS: These findings may be somewhat explained by differing views and a lack of effective communication between parents and nurses. There is a clear need for nurses to discuss parent involvement with parents and negotiate roles in relation to pain management.     

Nurses' experience in clinical encounters with children experiencing abuse and their parents

Aim and objectives. The aim of this study was to identify nurse’s experiences in the clinical care of children experiencing abuse. The objective was to assess how nurses remain professional especially when the suspected perpetrator is a parent. Background. The diagnosis of child abuse is a difficult one, yet essential because of the high morbidity and significant mortality rates. Young children may be unable to give a clear history; parents may be unwilling to be truthful, and the signs and symptoms of abuse are often not conclusive. A contributing factor to the challenges of providing nursing care to children in a context of abuse is the lack of education in this field. Nurses working in the care of paediatric patients may not be familiar with situations in which they cannot rely on histories provided by parents. Design. A qualitative study. Methods. Investigators used a qualitative design with a critical incident technique. Eleven nurses who cared for abused children and their parents at a tertiary care children’s hospital were interviewed. Results. We highlighted three areas in the analysis of the interviews: Feelings of ambivalence, nurses’ professionalism and the nurses’ care strategies. Participants expressed difficulties in maintaining a professional role in clinical encounters with the parents. The nurses were unhappy in their conflicting roles of both policing (a judging function) and nursing (a caring function). Conclusions. The nurses expressed that they had devised strategies to remain professional in the clinical encounter with abused children and their parents. To remain professional, education, counselling and experience was essential. Relevance to clinical practice. By identifying nurses’ experiences in clinical encounters with children experiencing abuse and their parents, nurses can assess what kind of specific interventions should be used to improve the caring situation.     

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.     

Patient Satisfaction in the Emergency Department—A Survey of Pediatric Patients and Their Parents

OBJECTIVES: To assess and compare overall satisfaction in pediatric emergency department (ED) patients and their accompanying parents. To identify aspects of health care delivery that influence satisfaction in these groups. METHODS: Pediatric patients (ages 5-17 years) and their parents (or guardians) seen at a university hospital pediatric ED were eligible. A convenience sample of English-speaking subject pairs (n = 101 pairs) was enrolled. Questionnaires were administered to both children and their parents at the completion of their ED care. The survey instruments used a modified Wong-Baker FACES Pain Rating Scale and a six-point interval scale. Factors measured included overall satisfaction, perceptions of pain and fear, and other characteristics of the ED visit. Data were analyzed using paired Wilcoxon signed-rank tests, Spearman rank correlation coefficients, and Fischer's exact chi-square tests (alpha = 0.05) where appropriate. RESULTS: Parent satisfaction was associated with the quality of provider-patient interactions (R = 0.54, p = 0.0001), the adequacy of information provided (R = 0.47, p = 0.0001), and shorter waiting room times (R = -0.24, p = 0.01). Child satisfaction was associated with the quality of provider-patient interactions (R = 0.24, p 0.04), adequacy of information provided (R = 0.51, p = 0.003), and resolution of pain (R = 0.25, p = 0.03). Parent estimates were similar to children's initial pain scores; however, children reported greater resolution of pain than appreciated by their parents (p = 0.006). CONCLUSIONS: Satisfaction can be validly and reliably measured in pediatric patients using a visual scale instrument. Factors that influence patient satisfaction were similar among both children and their parents. The influence of pain resolution on pediatric ED satisfaction is a novel finding, which demonstrates the importance of appropriate pain and anxiety assessment and treatment in children.     

Parent-nurse interactions: care of hospitalized children

BACKGROUND: An essential component of quality nursing care is nurses' ability to work with parents in the hospital care of their children. However, changes in the health care environment have presented nurses with many new challenges, including meeting family-centred care expectations. AIM OF THE PAPER: To report a research study examining the experiences of parents who interacted with nurses in a hospital setting regarding the care of their children. METHODS: A qualitative approach was employed for this study. In-depth audiotaped interviews were conducted with eight parents representing seven families. Data collection was completed over a 7-month period in 2001. FINDINGS: Parents characterized their experiences with nurses caring for their children as interactions, and identified the elements of establishing rapport and sharing children's care as key to a positive perception of the interactions. These elements were influenced by parental expectations of nurses. Changes in nurses' approach were reported by parents as the children's conditions changed. CONCLUSION: Nurses were able to work with families in the hospital care of their children in ways that parents perceived as positive. However, in parents' views, their interactions with nurses did not constitute collaborative relationships. A deeper understanding of these interactions may provoke new thinking about how to promote an agency's philosophy, and how nurses enact this philosophy in practice.     

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.     

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.     

Special Parenting and the Combined Skills Model

Background The Child and Special Parenting Service provides flexible assessment, long‐term domiciliary support and home‐based teaching to intellectually disabled parents. It provides key coordination between the Learning Disability Service and the Children's Service with focussed parenting assessments, where issues of child care and protection proceedings arise. Method Semi‐structured interviews and questionnaires were designed to evaluate user satisfaction for both recipients of the service and professionals referring to the service. Results A high level of consumer satisfaction was found and assessment reports were highly rated. The service is seen to help prevent family breakdown, to meet user needs and to be supportive and non‐threatening by the parents. Conclusions The combined skills model proposes a small, specialized service that acts as a linchpin for complex cases that require skills from both child and learning disability workers. The Child and Special Parenting Service receives an increasing demand for assessment. It is highly valued by the users and works strongly from an inter‐agency standpoint, coordinating complex packages of domiciliary assessment and support, and is a good practice model.     

Parent's involvement in decisions when their child is admitted to hospital with suspected shunt malfunction: study protocol

Title.  Parent's involvement in decisions when their child is admitted to hospital with suspected shunt malfunction: study protocol.
Aim.  This paper outlines the protocol for a study aimed at exploring parent's involvement during professional–parent interactions and decisions about their child's care in the context of suspected shunt malfunction.
Background.  Hydrocephalus is a long-term condition treated primarily by the insertion of a shunt that diverts fluid from the brain to another body compartment. Shunts frequently malfunction, and parents of children with shunted hydrocephalus are responsible for recognizing and responding to shunt complications. Parents feel that interactions with professionals when they seek healthcare advice for their child do always not encourage active participation in care decisions.
Methods.  The study design is based on qualitative methodologies: a combination of conversation analysis applied to consultation recordings of professional–parent interactions when a child is admitted to hospital with suspected shunt malfunction, and semi-structured follow-up interviews with the same participants within 2 weeks of the consultation.
Participants.  This is a prospective study and participants will be purposefully selected. Parents of children who have been admitted to hospital with suspected shunt malfunction and healthcare professionals responsible for the initial assessment of the child will be invited to participate.
Discussion.  The study will identify how decisions about a child's care are negotiated between parents and healthcare professionals at key stages of the care pathway. In addition, examining interactions between healthcare professionals and parents may identify approaches that support or hinder parents in contributing to the decision-making processes when they seek advice from healthcare professionals.     

Vigilance: the experience of parents staying at the bedside of hospitalized children

Although the incorporation of a family-centered model of care delivery and open visitation policies have supported parents at the bedside of hospitalized children, little research has been conducted exploring the daily experience of vigilant parents. The purpose of this qualitative ethnographic study was to explore the experience of vigilance and specifically to examine the meaning, patterns, and day-to-day rhythms of parents who stay at the bedside of their hospitalized children. Ten parents of hospitalized children on a general pediatric unit were purposively selected to participate in the study. Qualitative data analysis supported the themes generated by previous studies of vigilance: commitment to care, resilience, emotional upheaval, dynamic nexus, and transition (Carr & Clarke, 1997; Carr & Fogarty, 1999). The knowledge generated from this study helps to support the theoretical understanding of vigilance and enhances the ability of health care providers to provide care that is congruent with the needs of parents and their children.     

烧伤儿童及少年瘢痕增生期的生活质量自评与家长代评的差异

目的探讨烧伤儿童(7~12岁)、少年(13~18岁)瘢痕增生期的生活质量自评与家长代评的差异。方法便利抽样法选择2012年8月至2013年10月在瑞金医院进行治疗的处于瘢痕增生期的儿童、少年及其家长各40例(共计160例)为研究对象,采用儿童少年生活质量量表(quality of life scale for children and adolescent,QLSCA)对学龄期儿童、少年及其家长进行评估。结果处于烧伤瘢痕增生期的儿童对"躯体感觉"和"运动能力"因子的评分高于其家长,差异均有统计学意义(均P0.05),其他维度评分的差异均无统计学意义(均P0.05)。处于烧伤瘢痕增生期的少年在"社会心理功能"和"生理心理健康"两个维度中多个因子的评分低于其家长,而"躯体感受"和"负性情绪"因子的评分则高于其家长,差异均有统计学意义(均P0.05)。但在生活满意度的评分上,儿童和青少年与其家长的差异均无统计学意义(均P0.05)。结论在今后护理工作中应向家长指出代评的差异,以便进行更全面、优质、有效的心理指导,使家长在患儿瘢痕日常护理和康复中能和患儿进行更有效的沟通。     

Health seeking behaviors of Haitian families for their school aged children

Providing culturally sensitive health care to diverse groups would be enhanced by better understanding of their experiences with the health care system and perceptions of health and illness. Haitians comprise an immigrant group that has increased dramatically in the United States over the past three decades. The purposes of this study were to identify the health seeking behaviors of Haitian parents for their school-aged children and the barriers they experienced in obtaining health care services. Sixty-two Haitian parents and guardians were interviewed. Findings highlighted a lack of health insurance coverage, frequent use of private providers, general satisfaction with health care services, and strong parental values regarding preventive health care behaviors. Parents also reported the combined use of traditional remedies and biomedical treatments during their child's illness episodes. Implications for practice and future research with Haitian parents and children are identified.     

Gender differences in the use of coping strategies among Taiwanese parents whose children have cancer

This study explores parental gender-based similarities and differences in the use of coping strategies when their children suffer from cancer. The data from the 171 parent-couples who served as subjects for this study were selected from a larger data set of surveys from parents whose children were receiving treatment or follow-up care for cancer. The results show that no major differences were found between fathers and mothers in coping behaviors while caring for children with cancer. In addition to quantitative measure of coping behaviors, a qualitative orientation with more in-depth data is needed to explore how parents cope with children with cancer. More data are needed on additional variables that may influence coping such as the presence and severity of child's illness. Nurses need to be aware of the various coping behaviors that mothers and fathers use while caring for children with cancer. Assessment of coping strategies is a prerequisite to planning care for parents with cancer.