Qualitative analysis of the care of children in hospital in four countries-Part 2

As part of a large study of the care of children in Australian, British, Indonesian, and Thai hospitals, qualitative methods were used to examine differences influenced by culture. Two groups were surveyed: parents of hospitalized children, and staff caring for them. Vignettes were used to invoke discussion, and content analysis was used to examine the data. Subjects were interviewed singly, or in focus groups. These interviews were audiotaped and transcribed for analysis. This article is the second of a two-part series, and includes results of the staff's interviews and discussion. The parents' results and discussion were published in Part 1 (Shields & King, 2001). Staff in all the countries considered communication with parents to be an important part of care of the hospitalized child, and this was consistent with the parents' responses. Staff were mindful of safe practices, though more so in Australia and Britain than Indonesia and Thailand. Cost of treatment for the parents was an important consideration for staff in Indonesia and Thailand when they were planning care for the child. Cultural constructions were more likely to be considered by the Australian and British staff than the Indonesian and Thai staff, and this may have been influenced by the prevailing culture of medical dominance in those countries.     

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.     

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 most important needs of parents of critically ill children: parents' perceptions.

Research studies have identified the needs of relatives when they have had an adult family member in the intensive care unit. However little similar work has been done within the paediatric setting. Therefore the aim of this study was to examine what parents considered to be their most important needs, when they have a child ill in the intensive care environment (PICU). A questionnaire was designed, and was distributed to parents of 30 children admitted into a PICU. The questionnaire identified needs items which may be important to parents of sick children. The parents were required to indicate how important each need was to them during the time of the child's stay in the PICU. Results obtained indicate that parents have a strong need for information and relief of anxieties that they may have about their child's condition. A conclusion reached in this study is that if the critical care staff can go some way to assess and meet the needs of parents of critically ill children, then these parents may be more able to become effective partners in care, which may have therapeutic effects upon the child's health recovery.     

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.     

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.     

Parental preparation of children for routine physical examinations.

Preparation of the child and parents/caretakers for health care events is expected to decrease a child's anxiety and uncooperative behaviors. The purpose of this study was to ascertain the methods of preparation (discussion, reading, play, other) and levels of discussion used by parents in readying their preschool and school-age children for six selected events during routine physical examinations. A phone survey was conducted to all parents of children, ages 2 to 12 years, who visited an academic nursing center or public school for a routine physical examination (n = 132). The events are "listen to heart," "look in ears," "take temperature," "feel the stomach," "look at the throat," and "give a shot." The most common method of preparation parents used was discussion that consisted largely of procedural information rather than a reciprocal dialogue with the child. Preschool children were told what the health care provider would do and what they should do during the physical examination more often than school-age children.     

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.     

Children's consent to treatment: using a scale to assess degree of self-determination

Discussion and debate regarding decision-making that is 'in the best interest of the child' and that also considers the child's voice in these decisions have increased in recent years. A study was undertaken to identify everyday situations in medical and nursing care in which children had been allowed to have a voice or been denied the right. Twenty-six hospitalized children, ages 6 to 17 years, and 21 parents were interviewed concerning their experiences with hospitalization. The interviews contained examples of 100 situations in which the children could have had a say in decisions concerning their care and treatment. An instrument describing five levels of self-determination was used to analyze the situations. The results showed that there are situations in the daily care of children who are hospitalized where it is possible to discuss the degree of self-determination of the child. To different degrees, staff members honored children's choices in questions concerning their own health.     

Professionals' perceptions of children's participation in decision making in healthcare

The purpose of this study was to identify factors of importance for children's participation in medical and nursing care. A method close to the critical incident technique was used. A total of 92 stories told by staff and containing different levels of children's participation in decision making were analysed. The factors affecting children's participation in decision making were grouped into six categories: the child's protest, the child's age and maturity, the role of parents, attitudes of staff, the time factor and alternative solutions to the problem. This study shows that in certain cases children can affect their situation, bus also that violating actions are performed on children.     

‘Have you had the test?’ A discourse analysis of media presentation of prenatal screening in Iceland

Scand J Caring Sci; 2010; 24; 414–421
‘Have you had the test?’ A discourse analysis of media presentation of prenatal screening in Iceland Nuchal translucency (NT) screening has come to be widely used in antenatal care in many countries. In the capital area of Iceland, which is the focus of this study, 84% of pregnant women underwent screening in 2005. At the time no official policy had been formulated regarding the use of this screening, and very limited public discussion had taken place on the ethical issues related to its use. Although screening has been widely welcomed as a scientific and technological improvement, it may also have unintended consequences, both for practitioners and prospective parents, and for particular groups such as the disabled, which have not been fully explored. The purpose of this study was to examine how NT screening was introduced as a new practice and came to be adopted in prenatal care in Iceland. Using a genealogical approach, we explored the way in which the value and potential drawbacks of NT screening were presented to the public. The data used in the analysis comprised material published from the beginning of 2000 until the end of 2005, such as television programmes, newspaper and magazine articles and booklets written for prospective parents. The findings reveal that the screening was mainly promoted by staff at the specialized clinic where the test was offered, and that soon after its initiation screening became widespread. In interviews, both practitioners and parents of children with Down’s syndrome questioned the eugenic implications of screening and its impact on the lives of the disabled and their relatives. However, the societal response was fairly muted and a critical debate regarding the routine use of NT screening can hardly be said to have taken place. These findings alert us to the importance of promoting critical discussion of new knowledge and technology in health care, particularly when serious ethical issues are involved.     

A study of role negotiation between nurses and the parents of hospitalized children

The role of the parent of a hospitalized child has changed considerably over the past 30 years. Where parents were previously expected to had responsibility for care over to their child's nurses, there is now an expectation that parents will be extensively involved in the care of their hospitalized children. The negotiation of roles between nurses and parents has been advocated by workers concerned about conflicts between nurses and parents. However, it is not known whether such negotiation takes place between nurses and parents. It is clear that power is not evenly distributed between nurses and parents: issues of territory, stress, anxiety, uncertainty, control and conflicts arising from parental competence all place the parent in a weaker position. It is argued that the nurse holds the initiative in the decision about whether negotiation takes place. A small study is described in which nurses were invited to describes their response to their perception that a parent wanted to increase or decrease her or his involvement in her or his child's care. The critical incident technique (Flanagan 1954) was used to collect data. Nurses' responses were categorized into categories of 'encouragement', 'explanation/advice' and 'negotiation'. Responses were then placed in more specific subcategories. The inter-rater reliability of the categorization was measured. Owing to the limitations of the study, the results can only be regarded as suggestive. Nevertheless, significant association was found between the category of response and the grade of staff, with a stratified pattern of category of response demonstrated. The implications of the study for future research are discussed.     

The impact on families of respite care in a children's hospice program

With increasing trends towards home care of children with even the most complex conditions and care requirements, respite becomes critical in improving the quality of life for terminally ill children and their families. This article reports on the respite component of an evaluation project that examined the effect of the Canuck Place children's hospice program on the families it served during its first 30 months of operation. Canuck Place, located in Vancouver, British Columbia, Canada, is the first free-standing children's hospice in North America. Findings are derived from mail-out surveys to 144 families, face-to-face interviews with 18 families, and separate questionnaires specifically directed to parents who had used Canuck Place respite services. Sixty-five parents responded to the respite questions. They cited a wide range of benefits to the ill child, the child's siblings, and to the parents themselves; they also offered a few cautions. Our discussion focuses on three "lessons learned" from this unique investigation of respite within pediatric hospice care.     

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.     

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.     

A comparison of the stressors experienced by parents of intubated and non-intubated children

When children are ill enough to require admission to paediatric intensive care, parents may become distressed about their child's medical condition and this distress may be compounded by the unfamiliar nature of the highly technological environment Parents of children who are sick enough to warrant intubation are particularly likely to be exposed to a frightening array of technological equipment Seventy-one parents of intubated and non-intubated children completed the Parental Stressor Scale Paediatnc Intensive Care Unit (PSS PICU) Overall the findings suggest that parents were most distressed (a) by the painful procedures to which their children were subjected, (b) by the sights and sounds of the intensive care unit and (c) by their children's reactions to intensive care The behaviour of staff towards parents and the way that staff communicated with them caused the least distress When the levels of stress reported by parents of intubated children were compared with those reported by parents of non-intubated children, different patterns of stress were found Painful procedures were a source of greater stress to parents of intubated children whereas the behaviour of staff and the children's reactions to the intensive care experience caused greater stress to the parents of the non-intubated children In general the findings suggest that the needs of parents of non-intubated children are being overlooked, with staff focusing more of their attention on the parents of intubated children     

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.