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.     

FROM THE EDITOR—REFLECTIONS ON A CRAZY MENTAL HEALTH SYSTEM

The purpose of this study was to test hypotheses from a transactional model of the self, related to parental influences on children's self-concepts and self-esteem, within economically disadvantaged families. Thirty-nine school-age children completed self-report instruments that assessed multiple dimensions of self-perceptions, perception of parental support, importance of specific domains, and family conflict. Parents completed similar ratings of their children's specific competencies and their importance, childrearing practices, and family conflict. The results supported a model in which parents (a) influence self-concepts by providing children with information on how well they perform in specific domains and which domains are important; and (b) influence self-esteem by their affective behavior. Children and parents clearly agreed on the children's competence in school, social acceptance, and behavior but not in athletics or physical appearance. Family members did not consistently agree in their importance ratings. Global self-worth was predicted by children's perceptions of parental support and perceived competence in domains that were important to the parents.     

Always With Me: Understanding Experiences of Bereaved Children Whose Baby Sibling Died

An arts-based qualitative method was used to explore the experiences of children's bereavement after a baby sibling's death, in the context of their family and school life. Data were collected during in-depth interviews with 9 bereaved children and 5 parents from 4 Canadian families and analyzed. A central process, evolving sibling relationship over the years, and a pattern of vulnerability/resilience, ran through all four themes, which reflected ideas of connection, impact of parental grief, disenfranchisement and growth. Findings indicated that home and school are critical to children in creating safe spaces for expressing the evolving nature of infant sibling bereavement.     

Qualitative Iranian study of parents' roles in adolescent girls' physical activity habit development

Parents are likely to be key influences on children's physical activity behaviors, although it is not clear how. This study was designed to explore parents' roles in Iranian adolescent girls' physical activity habit development. A qualitative study was conducted by means of semistructured one‐to‐one interviews with 25 participants, including 16 adolescent girls (10–19 years of age), seven mothers, and two fathers. Content analysis was applied. Two main themes emerged as parental role in adolescent girls' physical activity behavior: developing interest in physical activity (making children familiar with physical activity, discovering talents, and role modeling) and providing support to adolescents for physical activity (material and immaterial). This study provided a better understanding of how Iranian parents influence their children's physical activity behavior. This will enable nurses to design more effective family‐based interventions.     

Hope and Siege: The Experiences of Parents Whose Children Were Placed in Residential Care

This qualitative study focused on research into the impact on parents of children's out-of-home placement. Twelve couples (24 parents) were interviewed. Three major themes emerged: (a) parents' perception of out-of-home placement as necessary because of children's destructive behavior and parents' victimhood; (b) parents' acknowledgment of positive changes in the child and the family, their pain surrounding the child's pressurizing to return home and fear of regression if this should come about; (c) guilt as a major emotion that impacts their couple relationship. The study results are evaluated in the context of research on parents' reactions to children's removal from home.     

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.     

Changes in children's fatigue during the course of treatment for paediatric cancer

Background: Fatigue is described as one of the most distressing symptoms of cancer therapy; yet it has received limited clinical attention. Children are suffering from a symptom that is under‐diagnosed during their treatment. Aim: The aim of this study is: (a) to assess the change in fatigue scores during cancer treatment according to children's perspectives, and (b) to describe the possible causes of fatigue from children's points of view. Sample and methods: The present study is part of an ongoing prospective study. The research group consisted of 40 (n = 40) children aged 7–12 years with cancer who are being followed up in the oncology clinic of a Greek children's hospital. After parental consent was obtained, data were collected using the Child Fatigue Scale and a sociodemographic data form. Results: The children with cancer reported a statistically significant increase in fatigue scores during their treatment (F = 6.846, P = 0.003). Gender was the only demographic factor associated with a significant increase in the fatigue scores (F = 4.857, P = 0.034). Conclusions: Cancer treatment was found significantly to increase children's fatigue levels. Medical procedures and the hospital environment seemed to be major causative factors of the fatigue experienced by children with cancer during their treatment.     

Part I: An introduction to conducting qualitative research in children with cancer

Over the past decade, pediatric nurse researchers have acknowledged the need to study children's cancer illness experiences within the qualitative research framework. Support for more qualitative research is based on the belief that it will afford researchers the opportunity to get closer to understanding children's perspectives of their cancer experience. A priori theories or generalizations by the researcher are not imposed; therefore, information emerging from the research is believed to be more a reflection of the perspectives of child participants and not adult researchers. Although pediatric oncology nurses may be interested in using more qualitative methods in their research, deciding on the appropriate qualitative research design may not always be so evident, considering that the adoption of qualitative inquiry in the study of childhood cancer is in its infancy. Accordingly, the purpose of this article is to increase the reader's understanding of the use of the qualitative research paradigm in the study of children's experiences with cancer. An overview of four qualitative research designs that pediatric oncology nurse researchers may adopt is presented. Specifically, the qualitative designs of grounded theory, ethnography, phenomenology, and biography or illness narratives are examined. To facilitate discussion, each of the four designs are applied to the study of symptom experiences in children with cancer.     

What does partnership in care mean for children's nurses?

Aim and objective. To explore partnership in care with a small sample of children's nurses in an inner city trust. (i) To obtain local data on what a sample of children's nurses understand by partnership in care and to what degree partnership in care is evident in their practice; (ii) where feasible, to compare these data with national and international literatures describing partnership in care and provide pointers that will be useful in contributing and responding to the children's national service framework. Background. Partnership in care has been practised within children's nursing in UK for over a decade, but is an amorphous topic. More recently, it has been suggested that partnership in care can be described as a part of the spectrum of family‐centred care. An exploratory study with 10 experienced children's nurses was undertaken to determine what they understood by the term partnership in care. Results. Seven categories emerged from the data: attitudes, respect for family, communication, parent understanding, effective partnership, all parties (satisfied) and improved well‐being. Conclusion. It is suggested that a negative approach to one of the first four categories leads to ineffective partnership in care. Relevance to clinical practice. Attitudes, respect for the family and communication should improve to enhance the practice of partnership in care. Respect for the child and family and communication have both been identified as important qualities within the new National Service Framework for Children, Young People and Maternity Services. Further research is suggested to determine the applicability of these findings to other members of the multi‐disciplinary team.     

Family centred neonatal palliative care in children's hospices: A qualitative study of parents' experiences

Since 1982, children's hospices in the UK have provided services where families can care for their children at the end of life (EOL) in a less medicalised environment. More recently, the services of many children's hospices have extended to newborn babies and their families. This paper explores the experiences of three families (five parents) who availed of children's hospices services when their babies required a palliative approach to care. Early diagnosis of a life-limiting condition in pregnancy allowed advanced care planning and enabled parental participation in decision-making before birth. A homely environment, as well as constant support and a sensitive approach from expert staff encouraged parental involvement in all aspects of their baby's care whilst in hospice. Extended time with their baby after death enabled parents to feel connected with their infant. The holistic and family-centred approach to care from children's hospices is highly valued by parents of newborn babies.     

Adult children of parents with mental illness: Dehumanization of a parent – ‘She wasn't the wreck in those years that she was to become later’

Children who have lived with parental mental illness experience long‐standing reduced health and social outcomes, alongside ongoing personal distress. While there has been some dialogue regarding interventions to support children who are living with parental mental illness, there remains a paucity of knowledge regarding adult children's experiences and potential needs. Given this, the aim of the present study was to establish parenting narratives of adult children who had experienced childhood parental mental illness. This included their experiences of being parented alongside their own subsequent parenting roles. Three men and 10 women, ranging from 30 to 78 years old, met individually with a researcher to tell their stories. Narratives were thematically analysed to establish themes. The findings of the study demonstrated that individuals who have lived with childhood parental mental illness dehumanized their parent with mental illness. The authors argue that all mental health services should be underpinned with a whole of family assessment and care philosophy. There is also a need for all mental health services to consider how policies and procedures might inadvertently dehumanize clients who are parents, which could contribute to familial dehumanization. This could prevent the dehumanization of parents who experience mental illness to preserve parental and child relationships.     

孤独症儿童母亲心理健康状况的质性研究

目的了解孤独症儿童母亲的心理健康状况。方法采用质性研究中的现象学研究方法,对14名孤独症儿童的母亲进行深入访谈,并用现象学分析方法进行资料分析。结果提炼出3个主题:心理接受过程漫长而复杂,负性心身体验,不断调整以适应变化。结论孤独症儿童母亲的心理健康状况不容乐观,应采取针对性的干预措施,改善其心理健康状况从而促进孤独症儿童康复。     

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.     

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.