Children's and Parent's Perceptions of a Magnetic Resonance Imaging Examination

The aim of this study was to describe children's and parents' perceptions after a magnetic resonance imaging (MRI) examination. Semistructured interviews with eight children and eight parents were conducted. The interviews were analyzed using a phenomenographical approach. Both children and parents perceived a sense of security when they received preparation/information. The children perceived that it was positive to have their parents present. Children and parents also felt a sense of security from the positive attitude of the health professionals. They perceived anxiety if they felt that the preparation/information they were given was insufficient. The MRI scanner caused anxiety because of its size, design, and sound, and they were anxious about the risk of a failed examination. The children talked much about the difficulty of lying still. The parents perceived that more information about the MRI examination should be offered. By having the knowledge of how children and their parents perceive an MRI examination could help and guide health professionals for better understanding and high-quality care.     

Consultation with children in hospital: children, parents' and nurses' perspectives

Aims and objectives. To explore children's, parents’ and nurses’ views on participation in care in the healthcare setting. Background. Children have a right to be consulted and involved in their care. Design. The grounded theory method was used and data were collected through in‐depth interviews, questionnaires and observation. Sample consisted of 11 children, 10 parents and 12 nurses from four paediatric wards in two hospitals in England. Results. Parents felt that children should be involved in the decision‐making process thereby enhancing and promoting children's self‐esteem and positive self‐regard, which would consequently enhance their overall welfare. Likewise, children expressed the need for consultation and information so that they could understand their illness; be involved in their care, and prepare themselves for procedures. However, children's own opinions and views were underused and they had varying experiences of being consulted about their care and treatment. Nurses appeared to hold varying and discrepant views on the involvement of children in decisions and for some nurses, the child's involvement seemed to be dependent on the child's cognitive maturity and being defined as a rational subject. Conclusion. Health professionals’ communication behaviour may reflect recognition of children's cognitive abilities rather than their competence to understand. The fact that children's nurses appeared to make decisions about involving children in decision making in the absence of a reliable framework was a significant finding and highlights a real problem in the current climate. Relevance to clinical practice. Nurses faced with workforce pressures may encounter considerable challenges to facilitating children's involvement in decisions about their care. Hence it is imperative that nurses’ examine the basis of their decisions and use more explicit criteria for determining children's involvement.     

Parenting children with hypoplastic left heart syndrome: Finding a balance

Purpose. This study described the role normalization played for parents related to their young children with hypoplastic left heart syndrome. Design and Methods. The data source for this secondary analysis was 30 interviews with 16 parents. Results. Three themes were identified: normalization, parental perception of child vulnerability, and optimistic appraisal. Parents engaged in a balancing act between worrying about their children's vulnerability and marveling at their children's survival, using normalization as a coping strategy. Practice Implications. Nurses can collaborate with parents to determine strategies to restore a sense of normalcy to simultaneously promote child independence and parent well‐being.     

Parent coping and child distress behaviors during invasive procedures for childhood cancer

This study examines what parents identified as their primary stressor before their child's invasive procedure, what coping strategies were used to manage the stress, what level of distress their children experienced during each phase of the procedure, and whether parents' coping modes were associated with their children's distress. Twenty children with cancer from 3 to 11 years of age and the parent present during the procedure participated in the study. Parents' primary stressors were identified as uncertainty about parent role and anticipating the child's distress during the procedure. Although parents used both emotion-focused and problem-focused strategies for coping with their primary stressors, they primarily relied on emotion-focused strategies. Children experienced the most behavioral distress during the procedural phase, and girls exhibited more distress than boys. The parents' coping modes were not associated with their children's distress, but children of parents whose primary stressor was uncertainty about parent role had higher distress than children of parents whose primary stressor was anticipating the child's distress. The findings related to parents' stressors, their coping strategies, and their children's distress were consistent with previous research. Directions for future research and suggestions for dealing with invasive procedures for childhood cancer are described.     

Expectations and experiences of accessing and participating in services for childhood speech impairment

Speech impairment (speech sound disorder) is a high prevalence condition that responds well to early intervention provided by speech-language pathologists (SLPs). However, not all children in Australia are able to access necessary speech-language pathology services. The aim of this research was to investigate Australian parents' experiences of accessing and engaging in speech-language pathology services for their children with speech impairment. Two studies were conducted to achieve this aim. In Study 1, questionnaires were completed by 109 parents of pre-school children who had been identified with concerns about their speech. Only a third (n?=?34, 31.2%) of the parents had previously accessed speech-language pathology services for assessment of their children's speech and just 29 of these (26.6% of the entire sample) reported their children had received intervention. Two thirds (n?=?68, 62.4%) of the parents had not sought speech-language pathology services and half of these (n?=?35, 32.1% of the entire sample) reported that “services were not needed”. There was a small number of parents (n?=?7, 6.4%) who had attempted to access services but had been unsuccessful. Parents identified teachers, family, friends, and doctors as important sources of information about their children's speech. In Study 2, interviews were conducted with 13 of the parents to discuss their experiences of speech impairment and service delivery in greater depth. Parents expected that others would make them aware of their child's speech impairment and that they should be able to access speech-language pathology services when required. Consequently, there is a need to raise awareness about speech impairment and speech-language pathology services to ensure appropriate identification, referral, and service provision for children at risk.     

Comparisons of Parent Cardiovascular Knowledge,Attitudes, and Behaviors Based on Screening and Perceived Child Risks

Questionnaire reports and universal screening procedures from 244 children (kindergarten, 5th grade, and 9th grade) were used to explore differences in parent health knowledge and attitudes of cardiovascular risks among children and parental involvement in promoting healthy lifestyles relative to whether their children were identified as being overweight or at risk of being overweight. The knowledge, attitudes, and behaviors of the parents of children who were identified as being at risk or overweight were further examined based on their perceptions of their children's level of risk. Parents' reports demonstrated significantly greater parent encouragement and knowledge of issues related to eating healthier foods and ways to cut calories among parents of children who were identified as being at risk or already overweight. A significant portion of parents underestimated their children's weight risks. Differences in parents' appraisals of their children's overweight risks were associated with differences in their knowledge, attitudes, and behaviors. These findings illustrate the need to address inaccuracies in parents' assessments of their children's overweight risks to improve parent investment and involvement in children's health modification programs.     

Telling tales: a qualitative exploration of how children's nurses interpret work with unaccompanied hospitalized children

Aims and objectives. To explore how qualified children's nurses define, interpret and give meaning to their work with unaccompanied children in hospital. Background. Unaccompanied children are amongst the most vulnerable of the hospital population yet there is little insight into the strategies nurses use to work with them. Design. A qualitative study. Methods. Tape recorded unstructured interviews with four qualified children's nurses. The interviews focused on stories from the participants’ experiences of working with unaccompanied hospitalized children. Transcribed interviews were analyzed for narrative structure to expose how the participants interpreted and gave meaning to their experiences. Findings. The participants’ interpretations of the child ‘alone’ advance previous understandings. The stories unfold into interpreted meanings that shed light on the participant's experiences of sadness and distress. Relevance to clinical practice. The strategy of differentiating between being a nurse and being a parent emerges as an important strategy in interpreting professional boundaries. The conventional meaning of ‘emotional distancing’ is further advanced by the participants’ resiliency at remaining emotionally available to the children and parents in their stories. Further research into the emotional aspects of working with children in hospital is warranted.     

Negotiation of parental roles within family-centred care: a review of the research

Aims and objectives. To review research published in the past 15 years about how children's nurses’ negotiate with parents in relation to family‐centred care. Background. Family‐centred care is a basic tenet of children's nursing and requires a process of negotiation between health professionals and the family, which results in shared decision‐making about what the child's care will be and who will provide this. The literature highlights inconsistencies in the degree to which nurses are willing to negotiate with parents and allow them to participate in decisions regarding care of their child. There is need to explore further the extent to which nurses communicate and negotiate shared care with children and their parents. Conclusions. Three themes emerged from this review of the literature relating to whether role negotiation occurred in practice, parental expectations of participation in their child's care and issues relating to power and control. Parents wanted to be involved in their child's care but found that nurses’ lack of communication and limited negotiation meant that this did not always occur. Nurses appeared to have clear ideas about what nursing care parents could be involved with and did not routinely negotiate with parents in this context. Relevance to clinical practice. For family‐centred care to be a reality nurses need to negotiate and communicate with children and their families effectively. Parents need to be able to negotiate with health staff what this participation will involve and to negotiate new roles for themselves in sharing care of their sick child. Parents should be involved in the decision‐making process. However, research suggests that a lack of effective communication, professional expectations and issues of power and control often inhibit open and mutual negotiation between families and nurses.     

Family characteristics and parents' and children's health behaviour are associated with public health nurses' concerns at children's health examinations

The study aimed to establish whether family characteristics and the health behaviour and illnesses of parents and children are associated with public health nurses' (PHNs') concerns about children's physical health and psychosocial development in the context of health examinations. Factors affecting children's health and well‐being should be identified as early as possible to provide children and families appropriate support. In 2007–2009, a cross‐sectional study in Finland collected information about PHNs' concerns, children's health and well‐being as well as the background factors affecting them during health examinations of preschool‐age children and school‐aged children (n = 4795). Associations between family characteristics, parents' and children's behaviour and diseases, and PHNs' concerns were assessed using logistic regression analysis. Overweight in children, the long‐term illnesses of both children and parents, and parental smoking were the factors most strongly associated with PHNs' concerns about a child's physical health whereas non‐nuclear family types, the father's low educational level and unemployment, the child's lack of sleep, and bullying were associated with concerns about the child's psychosocial development. The connections found demonstrate that health examinations should address factors that affect the whole family's well‐being so as to comprehensively promote children's health, growth and development.     

Asthma--quality of life for Swedish children

Aims and objectives. The purpose of this study was to describe how Swedish children with asthma experience their QoL and to search for possible associations between their experience of QoL and some determinants. Background. Asthma is a chronic disorder that can restrict a child's life, physically, emotionally, socially and spiritually, and this has an impact on a child's quality of life (QoL). Methods. Two hundred and twenty‐six children with asthma (37% girls and 63% boys) and 371 parents of these children participated in the study. The Paediatric Asthma Quality Of Life Questionnaire (PAQLQ) was used to measure the children's QoL. This questionnaire reveals how the children's asthma interferes with their normal activities, their symptoms and how this interference has made them feel. Results. The findings show that most children with asthma estimated their QoL towards the positive end of the scale. The children reported more impairment in the domain of activities than in emotions and symptoms. The most commonly restricted activity was the children's ability to run. Significant associations were found between a higher QoL outcome and being a boy, as well as living in the south of Sweden. A higher QoL was also found in children with mothers older than 40 years of age and in children with cohabiting parents. It was also associated with their fathers’ QoL in a positive direction. Conclusions. It is important that children with asthma will maintain a high QoL. In this study the children were being treated with asthma medication when they evaluated their QoL. Perhaps this fact might have influenced the results in a positive direction. Relevance to clinical practice. The findings of our study underline the importance of accurate nursing assessment including background variables of the children. Nurses also have to be aware that some of the children in the study have a low QoL and these children must not be forgotten. In addition, as caring tends to focus on the patients’ limitations, another important issue for nurses is to try to discover those aspects in a child's daily life that contribute to a high QoL in order to improve and maintain the child's wellbeing.     

An evaluation of a children's drug therapy service

The small-scale evaluation of one initiative set up to try and support the children of parents who are substance users is presented. The service, consisting of one worker, aims to safeguard and promote the child's welfare through direct work with children and their families and through liaison and collaboration with a range of professionals. Data were generated through a mix of semistructured interviews with key professionals and questionnaires distributed to professionals and parents currently using the service. The findings of the study demonstrate how professionals and parents perceive that the service reduces the social isolation the children experience and provides them with opportunities for sharing their experiences with a trustworthy adult and with other children in a similar situation. Parents report benefiting from the service through the support they receive outside of mainstream drug, health and social services. Professionals benefit from the expertise that the worker has and the opportunity to work creatively with the children and their families.     

Children's accounts of their preoperative information needs

Aims and objectives. To explore the information needs of children aged 7–11 years relating to planned admission for surgery. To identify the knowledge of a group of children prior to admission and their own identified information needs. Background. There is widespread agreement that children should be given information prior to surgery but continuing debate about the most appropriate form and content of preadmission preparation. There is little research evidence about children's concerns, fears and misconceptions about hospitals and surgery. Previous investigations have examined the views of parents/carers and health care professionals rather than the direct reports of children themselves. This study was designed to explore whether children could identify their own information needs prior to admission for elective surgery. Design. Qualitative. Method. Nine children aged 7–11 years were interviewed using the write and draw technique to ascertain their preadmission information needs. Data collection occurred several weeks prior to the child's first admission to hospital for planned surgery. Results. Children reported that they had not received direct information from the hospital or from health professionals. They obtained information from a variety of sources including leaflets for parents, television and the experiences of relatives and friends. Some children knew very little about hospitals and their own planned operation. Children identified 61 questions about their forthcoming admissions, including questions about: getting information; procedures; anaesthesia; timing; hospital environment; family support; feelings/pain; their condition; and concerns. Conclusions. Children aged 7–11 years can identify their own information needs and so contribute to the development of preadmission education. Relevance to clinical practice. Patients attending a children's hospital can have little information provided prior to admission. Information about hospital should be presented directly to children in the most accessible and flexible form.     

Knowledge Is Power: Benefits,Risks, Hopes,and Decision-Making Reported by Parents Consenting to Next-Generation Sequencing for Children and Adolescents with Cancer

ObjectivesTo qualitatively describe parent perspectives of next-generation genomic sequencing (NGS) for their children with cancer, including perceived benefits, risks, hopes/expectations, and decision-making process when consenting or not consenting to NGS and prior to result disclosure.Data SourcesQualitative interviews were used.ConclusionAltruism is an important factor in parents consenting to NGS testing, as well as making sense of their child's cancer and legacy building. Parents described realistic hopes and expectations associated with NGS participation. Although parents endorsed the likelihood of no medical benefit, those consenting to NGS felt there was no reason not to participate. Parents declining participation expressed avoidance of worry and parent guilt if a germline variant were to be disclosed.Implications for Nursing PracticeAs NGS evolves into a component of the routine diagnostic workup for pediatric cancer patients, genetic nurses play a role in conducting informed consent conversations and ensuring that patients and families have realistic hopes and expectations associated with NGS.     

Life situation and problems as reported by children with cancer and their parents

In recent years, the intensification of treatment for children with cancer has resulted in a considerable increase in the number of those who are cured. The intensive treatment has, however, led to a number of problems for the children and their families. The aim of this study was to identify children's experience of problems related to their cancer and the disease-effect on the child's life situation. Five children with varying diagnoses and treatment plans and five parents were interviewed separately. The qualitative interview data were compared with a quantitative measurement of problems. The interview data were analyzed by two of the authors according to qualitative analysis processes. Six categories regarding influencing factors on the children's life situation were found: (1) medical treatment and side effects, (2) isolation, (3) togetherness and support, (4) being in the center, (5) feelings and reactions, and (6) quality of care. About half of the variables on the list of problems were mentioned in 1 or more of the 10 interviews. Study findings suggest that health care personnel help children with cancer to reduce their fear of painful and frightening procedures by creating a relationship with the child.