Important aspects of care and assistance for children 0–7 years of age being treated for cancer

Aspects of care and assistance that are important for children aged 0-7 years who are being treated for cancer were examined. Parents ( N=57) and nurses ( N=59) were asked: "What caring aspects are important in ensuring that your child/the child feels cared for?" and "What help, if any, does your child/the child need outside the hospital?". Data were analysed by content analysis. The following aspects of care were identified: amusement, clinical competence, continuity, emotional support, family participation, honest communication, information, participation in decision making, satisfaction of basic needs, social competence, the parents are well cared for, and time. Parents most frequently mentioned social competence and amusement, while nurses most frequently mentioned continuity and information. The following aspects of assistance were identified: accessible care, amusement, emotional support, family life, meeting friends, normal life, practical support, rehabilitation and school support. At least a third of the children did not need any assistance, according to parents and nurses. Parents most frequently mentioned family life, meeting friends and practical support. Nurses most frequently mentioned normal life and family life. Taken together, the results indicate that not only a family but many more people need to be involved to help children with cancer to be cured not only in a biological but also a psychosocial sense.     

Important aspects of care and assistance for children with cancer

This study examined aspects of care and assistance that are important for 8- to 12-year-old children with cancer. Data were gathered through interviews with 25 children, 31 parents, and 32 nurses. Each participant was asked: “What caring aspects are important for you/your child/the child to feel cared for?” and “What help, if any, do you/your child/the child need outside the hospital?” Data were analyzed by content analysis. The following important caring aspects were identified: amusement, clinical competence, continuity, family participation, honest communication, information, participation in decision making, satisfaction of basic needs, social competence, and time. Children most frequently mentioned the importance of social competence, amusement, and satisfaction of basic needs. Parents and nurses most frequently mentioned the importance of information, social competence, and participation in decision making. The following important assistance aspects were also identified: emotional support, family life, meeting friends, practical support, rehabilitation, and school support. Two-thirds of the children did not mention that they needed any help outside the hospital. According to parents and nurses, one third of the children needed emotional support, whereas none of the children mentioned a need for this.     

Challenging the philosophy of partnership with parents: a grounded theory study

BACKGROUND: Parent participation is viewed as a pivotal concept to the provision of high quality nursing care for children and their families. Since the 1990's, the term 'partnership with parents' has increasingly been reported in the literature and adopted as a philosophy of care in most paediatric units in the United Kingdom. OBJECTIVES: To explore children's, parents', and nurses' views on participation in care in the healthcare setting. DESIGN: Using grounded theory, data were collected through in-depth interviews, and participant observation. Sample consisted of eleven children, ten parents and twelve nurses from four paediatric wards in two hospitals in England. RESULTS: Most nurses assumed that parents would participate in care and viewed their role as facilitators rather than 'doers'. Nurses reported that the ideology of partnership with parents did not accurately reflect or describe their relationships with parents. Parents could never be partners in care as control of the boundaries of care rested with the nurses. Parents felt compelled to be there and to be responsible for their children's welfare in hospital. CONCLUSIONS: The pendulum of parent participation has swung from excluding parents in the past to making parents feel total responsibility for their child in hospital. It is argued that the current models or theories on parent participation/partnership are inappropriate or inadequate because they do not address important elements of children's, parents' and nurses' experiences in hospital.     

Parental experiences: care of children with high and intermediate imperforate anus

In this study parental experiences of care of children with high and intermediate imperforate anus were evaluated. A group of 45 parents of children with high and intermediate imperforate anus and two control groups participated. Data collection with individual questionnaires concerning the child's hospital care, information to the parent and the child, and involvement in the care of the child were performed. Parents of children with imperforate anus reported being less satisfied with the care of their child, and they were less content with information about their child's treatment compared with the control groups. The parents had been extremely involved in the follow-up treatment. Constipation and fecal incontinence are common and involve suffering for the children and their parents. Parents have to be motivated and supportive and have a great deal of patience to be able to put up with caring for these children, and it seems as if health care professionals have underestimated their problems.     

Nurses' Views About the Barriers and Facilitators to Effective Management of Pediatric Pain

Children continue to experience moderate to severe pain during hospitalization. This paper presents data from two modified focus groups undertaken as part of a larger study exploring pediatric pain management practices in one hospital in the south of England. Thirty nurses took part in the focus groups and were asked questions about their views about the barriers and facilitators to effective pain management in the hospital. Participants identified a number of barriers which related to the staff, children and parents and the organization. Nurses indicated that they and the medical staff lacked knowledge about pain management. They also felt that staff shortages and a heavy workload detracted from the quality of the care they could provide. Several participants indicated that insufficient analgesic drugs were sometimes prescribed. Many of the barriers identified related to parents and children. It appears that nurses may not take as active a role as they could do in managing pediatric pain rather seeing it as the parents and child’s responsibility to let them know when they are experiencing pain. Nurses also felt that parents exaggerate their child’s pain and ask for analgesic drugs before their child needs them. There is a need to explore the interactions between nurses, children and parents in this context in more detail.     

Pediatric brain tumor patients: their parents' perceptions of the hospital experience.

Studies have shown that admission to the hospital of a child can induce feelings of fear and helplessness in parents, challenging usual patterns of coping and parenting competence. Stress has been associated with parents' need to establish effective communication with staff and their need for information, ready access to their children, and participation in decision making relating to their child's care. This study of coping and adjustment was undertaken with the parents, including mothers and fathers, of children under 18 years of age diagnosed with a brain tumor, presenting at Royal Children's Hospital, Melbourne, between 2001 and 2002 (N=53). It was a prospective study using repeated measures over time. Participants in the study were involved in a questionnaire interview at 4 different points: at the time of diagnosis, 6 months postdiagnosis, 1 year postdiagnosis, and 2 years postdiagnosis, in which they were asked, among other things, about their experience of the hospital. The point of diagnosis was marked by a high level of dependence, with parents coping with rapid decision making and shock, and the surrender of care of their child. Parents identified high levels of information need but noted that they were often too stressed to take in information early on, and that this information need persisted up to the 2-year postdiagnosis point. More parents expressed dissatisfaction with the hospital and particularly with their interactions with the health care team at the 6-month post-diagnosis period, reflecting a possible reduction in attention given to families once they had settled into the treatment routine and the crisis of diagnosis had passed.     

Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service

OBJECTIVE: To obtain feedback from families of children receiving palliative and supportive care about their care needs in hospital and in community settings. DESIGN: A two-phase combined quantitative and qualitative study. SETTING: Western Australia. PARTICIPANTS: 134 parents and 20 service providers. RESULTS: Analysis indicated the concept of palliative care is poorly understood by health professionals and by parents. Many families are affected emotionally, financially and physically by the burden of caring for children with life threatening or chronic conditions requiring complex care at home. Parents indicated the need for clear and honest information about their child's condition and prognosis throughout the trajectory of illness and perceived this had been lacking. Families required financial and practical assistance with providing care from their children at home. Parents also wanted more practical resources and information to assist with the management of their child's nutrition and pain, as well as support for their other children. The level of respite (in home and residential) was perceived to be insufficient and inequitable. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. There was a perceived lack of coordination between community services and the hospital. CONCLUSION: Education of health professionals and parents regarding the concepts and introduction of palliative and supportive care is required. Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and linked and integrated with the treating hospital in collaboration with community services. More inclusive criteria are required for community services including practical aids and respite care.     

A study of parental involvement in pediatric hospital care: implications for clinical practice

BACKGROUND: Although it has become common practice for parents to stay with their sick child in hospital, most hospitals lack routines and staff guidelines for involving parents in care processes and decisions. AIM: To gain a deeper understanding of factors that influence parental involvement and to clarify the parental role in the hospital care of chronically ill children. METHODS: Semistructured interviews with 14 parents of chronically ill children. RESULTS: Four themes were identified: support, professionalism, work environment, and responsibility. These themes describe the experience and perceptions of parents who regularly spend time in the hospital with their children. CONCLUSIONS: Clinical practices regarding parental involvement need to be established to optimize the hospital care of chronically ill children.     

Nurses' perceptions of parental involvement in hospital care

Parental involvement is an essential element of quality of care for children in hospital. However, there is often confusion in role perception between parents and nurses which may be affected by nurses' attitudes, their ability to provide information, their communication and interpersonal skills and willingness to relinquish control. AIM: This study examined nurses' perceptions of parental involvement and communication with parents of children in hospital and explored differences in perceptions of recent graduate nurses and more experienced nurses. METHOD: Two focus groups were carried out at a university paediatric hospital in Sweden, one with experienced paediatric nurses (n = 7) and one with recent nursing graduates (n = 6). FINDINGS: Analysis of the discussions identified five themes: clarifying roles, information, work environment, support and clinical competence. These nurses confirmed the belief that involving parents in the child's care is an important part of nursing in paediatric care and suggested that the nurses should play the role of being the communicator with the parents. CONCLUSION: Nurses need to be aware of the impact their communication has on parents and help them to clarify their role as parents in hospital.     

Hospitalized children with chronic illness: parental caregiving needs and valuing parental expertise

Parents who care for a child with a chronic illness are forced to relinquish much of the control of the child's care when the child is hospitalized. By using the family systems theory as the underlying framework, the amount of control that parents of children with chronic illness wanted over their hospitalized child's care, and the degree to which parents felt health care professionals valued their expertise, was examined in a national sample of 50 parent caregivers. Participation in information sharing and technical care were areas over which parents wanted the most control. Nurses and attending physicians were rated highest in valuing parental expertise. Content analysis of an open-ended question on parental control revealed that parents felt a higher quality care was given at home than in the hospital; nurses were too busy or understaffed to provide optimal care in the hospital; and the child's control of care and decision making should increase as the child grew older.     

Parental support needs during pediatric resuscitation: A systematic review

BackgroundResuscitation of a child is one of the most critical times that parents need support, and parental support is fundamental to providing family-centered care in high acuity settings. The aim of this systematic review was to appraise and synthesize studies conducted to examine the support needs of parents during resuscitation of their child from their own perspective.MethodThe PRISMA model guided the systematic literature search of Google Scholar, PubMed, Cochrane, Scopus, and Ovid for studies published until the end of 2020. Keywords used were: family support, family-centered care, family needs, resuscitation, CPR, children, neonatal, pediatric, family presence, family-witnessed, and parents.ResultsThere were 787 articles located. After reviewing for relevancy, 21 articles met criteria and were included in this review. Findings indicate the needs of parents during resuscitation of their child include: Spiritual and cultural support; Communication with the child before and after resuscitation; Professional behavior from staff; Receiving information; Presence at resuscitation; Trust in the resuscitation team; and Having physical and mental needs met.ConclusionParents have differing support needs when their child is resuscitated in the hospital, and meeting these needs is critical for providing family-centered care.     

Important aspects of care and assistance for parents of children, 0-18 years of age, on or off treatment for cancer. Parent and nurse perceptions.

Important aspects of care and assistance for parents of children (0-18 years) diagnosed with cancer were investigated. Parents (N=114) and nurses (N=121) were asked the following questions: 'What caring aspects are important for you/the parent to feel cared for?' and 'What help, if any, do you/the parent need outside the hospital?' Nurses were asked to answer for a certain parent. Data were analyzed by content analysis. The following aspects of care were identified: accessible care, clinical competence, continuity, emotional support, information, participation in care, participation in decision making, physical ambience, shift in parenting roles, social competence, temporary assistance, own child is well cared for, and time. Most parents mentioned the importance of social competence and information, most nurses mentioned the importance of information and emotional support. The following aspects of assistance were identified: accessible care, emotional support, financial support, instrumental support, and support to live a normal family/social life. A third of the parents and a fourth of the nurses were of the opinion that the parent did not need any assistance. Most parents who mentioned a need of assistance mentioned a need for emotional and instrumental support. Most nurses mentioned a parental need for emotional support and accessible care.     

Important aspects of care and assistance for siblings of children treated for cancer: a parent and nurse perspective

Aspects of care and assistance important for siblings of children treated for cancer were examined. Parents (n = 97) and nurses (n = 105) were asked: "What aspects of care are important for the siblings to feel cared for?" and "What help, if any, do the siblings need outside the hospital?" Data were analyzed by content analysis. The following care aspects were identified: amusement, emotional support, family life, information, normal life, participation, social competence, and time. Most parent and nurse answers were categorized as participation, information, and social competence. Parents more frequently than nurses (chi2 = 6.1; df = 1; P =.05) mentioned answers categorized as information and nurses more often than parents (chi2 = 12.3; df = 1; P =.001) mentioned that they did not know about any important care aspects. The following assistance aspects were identified: emotional support, fair attention, family life, normal life, practical support, and school support. Most parent and nurse answers were categorized as emotional support, fair attention, and family life. Parents more often than nurses (chi2 = 7.9; df = 1, P =.01) mentioned answers categorized as practical support and siblings not needing any assistance (chi2 = 8.3; df = 1; P =.05). Nurses more frequently than parents (chi2 = 25.1; df = 1; P =.001) mentioned that they did not know about any important aspects of assistance. Parents and nurses agree fairly well on what aspects of care and assistance are important for siblings of children with cancer.     

Parental guidance and counselling by doctors and nursing staff: parents' views of initial information and advice for families with disabled children

This paper describes changes that have taken place, over a period of 10 years, in the way physicians and nursing staff in Finland give initial information and advice to the parents about their child's disability. It also discusses the association between quality of information given and parents' feelings of insecurity or helplessness. In the study, we compared the experiences of parents of older (aged 12-17) disabled children with those of parents with younger (aged 7-9 years) disabled children. There were 85 children, whose disabilities were either learning or physical, or, in a few cases, both. Parents completed a questionnaire and were interviewed by a social worker. According to these reports, the initial information and advice received by the parents with younger children about their child's disability and its treatment, and on coping with the child at home, was better than that received by the parents of the older children. The parents of the younger children also reported feeling better prepared to take care of their child. Those parents who reported having received little information and practical advice on coping with their child at home experienced feelings of insecurity and helplessness five times as often as those who were satisfied with the information and advice.     

Health assessment in child care centers: parent and staff perceptions

PURPOSE: The purpose of this study was to identify preschool children's health needs in child care centers, as perceived by parents and staff. METHOD: A Health Care Services Assessment was completed by 55 parents and 13 staff in four urban child care centers to identify the health services needed and children's common health problems. FINDINGS: The majority (69%) of the parents and staff reported that onsite health services were needed at least once a week. Helpful health services were identified as screening exams for respiratory illnesses (88%), other illnesses (87%), developmental problems (51%), and children with special needs (50%). The most commonly identified child health problems were colds (93%) and ear infections (75%). CONCLUSION: These findings indicate that efforts to protect the health of preschool children in child care centers might best begin with health services focused on prevention, such as screening children for illnesses and providing information on infection control.     

Caring for a child with diabetes: the effect of specialist nurse care on parents'' needs and concerns

One hundred and sixty parents of 10- to 18-year-old children with diabetes were interviewed using Hymovich's Chronicity Impact and Coping Instrument (CICI: PQ). Eighty-two parents had access to a specialist nurse service; 72 parents did not. Regardless of the age of the child or the duration of diabetes, parents expressed a need for advice and support with child care. Parents with a specialist nurse needed information on more topics tending to focus on activities of daily living and child development rather than physical care and illness. They were also more likely to seek and receive help from nurses. Their level of concern was greater and, it is argued, may be the price parents pay for greater awareness. The findings of this study suggest that a systematic assessment of parent coping is necessary if specialist nurses are to help parents in their role as primary health carers.     

Children's participation in the decision-making process during hospitalization: an observational study

Twenty-four children (aged 5 months to 18 years) who were admitted to a university hospital were observed for a total of 135 hours with the aim of describing their degree of participation in decisions concerning their own care. Grading of their participation was made by using a 5-point scale. An assessment was also made of what was considered as optimal participation in each situation. The results indicate that children are not always allowed to participate in decision making to the extent that is considered optimal. In no case was it judged that a child participated in or was forced to make a decision that was too difficult for the child. The interactions between children, parents and staff were also described in connection with discussions and decision-making processes. This showed that parents do not always support their children in difficult situations and that health care staff often inform children about what is going to happen without presenting alternatives or asking for their views. Staff may, however, find themselves facing an ethical conflict in deciding between supporting a child's view or following hospital routine. It is of great importance that children are looked upon as potentially autonomous individuals and that staff members realize that one of their core duties is to facilitate children's participation in decision making concerning their health care.