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.     

An examination of the needs of parents of hospitalized children: comparing parents' and staff's perceptions

The needs of parents of hospitalized children have received some attention in the health literature, but few studies have compared parents' perceptions of needs with staff's ideas about parents' needs. The aim of this study was to examine differences between the perceptions of the needs of parents of hospitalized children held by staff - nurses, doctors and allied health staff, and parents in a 150-bed paediatric hospital in Sweden. The convenience sample comprised 132 staff - nurses, doctors and allied health staff and 115 parents of children admitted to all the wards except intensive care. Kristjánsdóttir's "needs of parents of hospitalized children" questionnaire (NPQ) was the instrument of choice and was modified slightly for use with staff. Results indicated significant differences in perceptions of the importance of different needs of parents, of how well they were being met in the hospital and how much help the parents needed to have them filled. Differences between parents' and staff's perceptions of the importance of parental needs were found in areas relating to psychosocial needs, but in general, in that hospital, the needs were being adequately met. The main differences between staff's and parents' results were in the degree of independence shown by parents in requiring help to have their needs met. This demonstrates either that parents are much more independent than appraised by staff, or, that parents are sometimes unaware of the level of assistance available.     

Hospital care of children in four countries

BACKGROUND: While perceptions of parents and staff about care of hospitalized children have been explored in developed countries, little research has examined these in developing countries. Assumptions about family-centred care are often based on Western values, with little evidence of how cultural constructs affect care delivery in developing nations. AIM: This paper reports a study to provide evidence from which culturally-appropriate hospital care for children can be delivered. METHODS: Using a rigorously devised and trialed questionnaire, attitudes of staff and parents about the way children are cared for in children's hospitals in four countries were examined and subjected to a four way analysis: parents and staff within and between developed and developing countries. RESULTS: There were no questions where all parents and staff in both developed and developing country groups were in complete agreement. However, there was some indication that, while culture plays a major role in paediatric care delivery, basic concepts of family-centred care are similar. CONCLUSIONS: The findings are limited by the sampling strategy. Nevertheless, while differences were found between parents' and staff's expectations of the delivery of care to children in hospitals, similarities existed and the influence of culture cannot be ignored. Education programmes for staff and parents should reflect these influences to ensure the optimum delivery of family-centred care, regardless of where the hospital is situated.     

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.     

A review of the literature from developed and developing countries relating to the effects of hospitalization on children and parents

There is a literature base about the care of children in hospital in developed nations, but little from, or about, developing countries. The aim of this review was to critically examine publications relating to the effect of hospitalization on children and their parents. 'Parents', in this context, were considered as the child's natural or adoptive parents, step-parents or any other context of parent-child relationship, in other words, the primary care-giver to the child. Most of the work reviewed from developed countries was sourced from the nursing literature, while in developing countries, the available literature was largely from medicine. Conclusions from developed countries indicated that parents should be allowed to stay in hospital with their child, and that care must be developmental-stage appropriate. Furthermore, staff need to be educated about special needs of children, children should be prepared for hospital admission (if possible) and parents' needs met. In developing countries, the meagre literature available suggested that recognition of the important role parents play in a child's hospitalization is starting to become recognized.     

End-of-life care in a children's hospice program

A project was completed in 1999 to evaluate the Canuck Place children's hospice program. This article reports only on the end-of-life care component. Results are provided from mail-out surveys with families who required end-of-life care and are supplemented by qualitative data which were collected from interviews with individuals prior to the survey. Eighteen families completed face-to-face interviews and another 70 families completed the mail-out questionnaire developed from the initial interviews. A total of 39 parents responded to the survey section about end-of-life care services. Results indicated that parents were reasonably comfortable discussing death with staff; they generally felt well prepared for their child's death because of the staff; the death of another child had a significant effect on families; parents' wishes at the time of their child's death were very supported by staff; and families were well supported by staff at the time of a child's death. Implications for practice and suggestions for future research are discussed.     

Hospital staff perceptions of parental involvement in paediatric hospital care

AIM: This paper reports a study of hospital staff perceptions of parental involvement in children's hospital care. BACKGROUND: Previous research has shown that parents are expected and encouraged by hospital staff to be actively involved in the care of their hospitalized children. At the same time, parents have expressed a need for improved communication with paediatric hospital staff to clarify both parental and staff expectations and preferences about this involvement. Few studies, however, have studied hospital staff perceptions of parental involvement in the care of hospitalized children and their implications for clinical work. METHODS: A cross-sectional questionnaire study was conducted among paediatric hospital staff in October of 2003. Questionnaires were distributed to a total of 338 staff, including all physicians, Registered Nurses and nursing auxiliaries working on oncology, surgery and neurology units in three university children's hospitals in Sweden. RESULTS: A total of 207 questionnaires were returned, yielding a response rate of 61%. Exploratory and confirmatory factor analyses of the 26-item questionnaire resulted in the creation of two indices, Work Routines and Work Strain. Oncology staff reported having better work routines for involving parents in their children's care and they experienced less strain from parental demands compared with staff on other paediatric units. Staff perceptions and workplace routines regarding parental involvement did not differ statistically significantly by profession or by length of work experience. CONCLUSION: Staff perceptions of parental involvement may be related to clinical specialty. Oncology units may find it easier to establish routines for parental involvement, thereby experiencing less work strain in their interactions with parents. There is a need to further study staff perceptions of parental involvement and their implications for the staff work situation in both Sweden and other countries.     

The social situation in Thailand: the impact on elderly people

Most Thai people are Buddhists who believe in the concept of repayment for their parents' goodness and usually live with their parents. Currently, a growing number of older Thai people, as well as the changing Thai society, is affected by the need for more health-care services and social support. The intention of this paper is to describe the social situations in Thailand that impact on support for Thai people aged 60 years and older. The paper covers demographic change, socio-economic change, family structure, Buddhism and the health of elderly people. The information presented is based on socio-economic knowledge and former research studies, and is intended to be used as the basis for better nursing care and health-care services in Thailand.     

Who owns the child in hospital? A preliminary discussion

Aim. To ‘own’ a person is considered an infringement of human rights, but we suggest that concepts of ownership influence interactions between parents and staff when a child is admitted to hospital. This paper aims to stimulate debate and contains an explanation of the exploration of the literature for research and discussion of ownership of the child. Method. A wide variety of library indexes, databases and populist media were examined although it was impossible to examine all literature which may have contained references to this topic, and, apart from databases which contained abstracts in English, we could not include literature written in any language other than English, Swedish, and Icelandic. Findings. We found no research that examines how concepts of ownership of a child affects communication between health professionals and parents and, ultimately, the delivery of health care. This paper begins discussion on the issues. Discussion. Historical literature shows that ownership of humans has been a part of many cultures, and parents were once considered to own their children. Ownership of another has legal connotations, for instance in guardianship struggles of children during marriage breakup and in ethical debates over surrogacy and products of assisted conception. Within health care, it becomes a contentious issue in transplantation of body parts, in discourse on autonomy and informed consent, and for religious groups who refuse blood transfusions. In health care, models such as family centred care and partnership in care depend on positive communication between parents and staff. If a hospital staff member feels that he/she owns a child for whom he/she is caring, then conflict between the staff member and the parents over who has the ‘best interests of the child’ at heart is possible. Conclusion. We encourage debate about concepts of who owns the hospitalized child – the parents or the staff? Should it be argued at all? Is the whole concept of ownership of another, be it adult or child, the ethical antithesis to modern beliefs about human rights? Comment on this issue is invited.     

Why Thai parents do not discuss sex with their children: a qualitative study

This qualitative article explores the attitudes of Thai adolescents and parents concerning the barriers that prevent parents providing sex education to their adolescent children. Focus groups were conducted with 30 parents and 36 adolescents in rural north-eastern Thailand and were analyzed by using thematic analysis. The results showed that most Thai parents have not taught their children about sex education issues. Five themes emerged in relation to the limitations in providing sex education in Thai families. These were: restrictions imposed by traditional Thai culture; sex education is not a parental duty; parental limitations; the generation gap; and better not bring it up. We conclude that the core values in Thai society restrict the discussion of sex, resulting in youth missing the opportunity to acquire the knowledge that is needed about sexual issues from their family. This article provides evidence of how parents' knowledge and perceptions are linked to their ability and willingness to discuss sexual matters with their teenagers. Therefore, future sex education policies could be greatly enhanced by empowering parents to take part in the sex education of their teenage children.     

Staff perception of the implementation,enablers and barriers to pediatric intensive care unit diary writing: A qualitative study

ObjectivesTo explore how the multi-professional pediatric intensive care unit staff experienced the implementation of the diary.Research Methodology/DesignQualitative study using the implementation research approach.Setting: a six-bed pediatric intensive care unit at a large Italian tertiary care pediatric hospital, treating patients with acute conditions from the Emergency Department or hospital wards.Main outcome measuresHealthcare providers’ experiences of the implementation of the diaries. Data was collected by focus groups and interviews and thematic analysis was performed.FindingsThree focus groups and four interviews with staff were conducted after the implementation of thediaries from August 2020 to June 2021. Staff describe an initial disbelief towards the effectiveness of diaries followed by an increasing perception of their relevance for parents’ emotional expression through shared narration. Diaries are reported as a beneficial communication tool between the family, the child, and health care providers, increasing staff understanding of parents’ experiences of their child’s admission and parents’ sense of the care received by their child. For staff, barriers for diary writing were logistics, lack of time, limited sense of ownership, fear of legal retaliation and fear of emotional labor.ConclusionHealth care providers perceived diaries as beneficial for parents and the healthcare team, potentially supporting their partnership as recommended by Family Centered Care models. The enablers and barriers that emerged for diary writing can support the development of implementation strategies to prevent the reported challenges to diary writing in the healthcare team, enhancing their uptake in the pediatric intensive care unit setting.     

Perioperative care of children in a transcultural context

As part of a large, comparative study of how children are cared for in developed and developing countries' hospitals, health care professionals and parents were asked questions relating to their beliefs about parental presence during anesthesia induction and in postanesthesia care units. Children were not questioned. The researcher compared parents' (n = 957) and staff members' (n = 780) responses between developed and developing countries. Results indicate that parents and staff members in developed and developing countries responded significantly differently (P < .000001) to whether they believe parents or relatives should stay with their children until anesthesia takes effect. More staff members in developing countries responded that parents should be present (P = .007). Cultural constructions (e.g., class) are believed to influence strongly how care is delivered in developing countries studied. Cultural constructions were not as important in the developed countries.     

Assessment of inpatient treatment of mentally ill patients in Thailand: implications for practice

Given the demand for services, psychiatric facilities in Thailand, strive to provide quality care despite limited resources. Patient quality of care initiatives are limited. The purpose of this investigation is to assess the quality of inpatient treatment among a group of acutely mentally ill hospitalized Thai patients. This study presents important data on the standards of care provided to mentally ill patients at one inpatient facility in Thailand. This study is one of the first to look at the inpatient care for Thais with a diagnosis of an acute mental illness. Areas for improvement identfied in this research include master treatment planning and documentation of care, patient teaching, and management of aggressive behavior. This study provides an insight into the patient profile and major nursing problems facing Thai nurses. The article also highlights areas of concern such as the high use of ECT and mechanical restraint. How pervasive these deficiencies are in other settings is not known. The findings in this study were shared with the professional staff. It is hope that the nursing staff armed with the results of this study will develop performance improvement activities to improve the quality of care.     

Time management: realities for parents living with children with motor deficiencies]

A quantitative study involving 244 families from three health and social service regions of Quebec was undertaken to explore how families function. Fourteen families agreed to participate in the qualitative part of this study. Twenty-eight parents participated through an in-depth interview. During the interviews, the impact of the presence of a child with a motor disability on the parents' use of time was discussed. An analysis of the themes and categories highlighted the different aspects of the impact of a handicapped child on the parents' use of time in relation to the four spheres of life. In fact, the parents that were interviewed indicated that the presence of their child greatly influenced the time they had available for their personal, conjugal and family life as well as for doing any paid work. In general, mothers devoted more time than fathers to the care of the child. This situation has a direct impact on the way the mothers manage their time. Based on an analysis of the respondents' comments, the author recommends to offer support to the parents in order to assist them with time management.     

Comparing Psychological Adaptation to having a Disease Gene in Affected Individuals and Unaffected Carrier Parents

Health care professionals are in an ideal situation to help families inform their children about genetic conditions. In families where there is a child with a known genetic condition, parents make decisions about when and how to convey information to their children, however, little is known about how parents make these decisions. The purpose of this qualitative analysis was to examine parents' beliefs and strategies related to sharing information with their children. The sample consisted of 139 parents of children with sickle cell disease, phenylketonuria, cystic fibrosis, Marfan syndrome, neurofibromatosis, hemophilia, and von Willebrand disease. Audio recorded, semi-structured interviews were transcribed verbatim, processed, and coded using the ATLAS.ti software. Thematic analysis found: parents share information and develop specific strategies within a context of normalizing the child's life; parents' decisions to share information are based on a developmental framework; parental strategies for sharing information with children may differ when the child has a potentially life-limiting genetic condition. Findings emphasize the need to use a family developmental perspective when working with families of children with genetic conditions. These findings will provide new information about how families manage information and provide direction for care of families in which a child has a genetic condition.     

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.     

The Development of Trust in Parents of Hospitalized Children

ISSUES AND PURPOSE The purpose of this study was to investigate the development of trust in parents of hospitalized children. METHODS Using grounded theory, semistructured interviews were conducted with 15 parents of children previously hospitalized, focusing on parents' experiences during their child's hospitalization. Data were analyzed using a constant comparative process. Themes and the core variable were identified and a model of trust developed. RESULTS The core variable related to the development of trust in healthcare providers was whether parents' expectations for care were met. Thematic areas that influenced whether expectations for care were met included preexisting trust; evaluation of care, including evaluation of technical skills and the meeting of parental and child needs; and behaviors of nurses and other healthcare providers that inhibited and fostered trust. PRACTICE IMPLICATIONS Strategies to enhance trust are discussed.