Parent's involvement in decisions when their child is admitted to hospital with suspected shunt malfunction: study protocol

Title.  Parent's involvement in decisions when their child is admitted to hospital with suspected shunt malfunction: study protocol.
Aim.  This paper outlines the protocol for a study aimed at exploring parent's involvement during professional–parent interactions and decisions about their child's care in the context of suspected shunt malfunction.
Background.  Hydrocephalus is a long-term condition treated primarily by the insertion of a shunt that diverts fluid from the brain to another body compartment. Shunts frequently malfunction, and parents of children with shunted hydrocephalus are responsible for recognizing and responding to shunt complications. Parents feel that interactions with professionals when they seek healthcare advice for their child do always not encourage active participation in care decisions.
Methods.  The study design is based on qualitative methodologies: a combination of conversation analysis applied to consultation recordings of professional–parent interactions when a child is admitted to hospital with suspected shunt malfunction, and semi-structured follow-up interviews with the same participants within 2 weeks of the consultation.
Participants.  This is a prospective study and participants will be purposefully selected. Parents of children who have been admitted to hospital with suspected shunt malfunction and healthcare professionals responsible for the initial assessment of the child will be invited to participate.
Discussion.  The study will identify how decisions about a child's care are negotiated between parents and healthcare professionals at key stages of the care pathway. In addition, examining interactions between healthcare professionals and parents may identify approaches that support or hinder parents in contributing to the decision-making processes when they seek advice from healthcare professionals.     

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.     

The parent–nurse relationship in the neonatal intensive care unit context – closeness and emotional involvement

Aim and background:  Family-centred care, which acknowledges parents as partners in care, is a desirable and essential part of neonatal nursing. There has been extensive research on parents' experiences of parenting in neonatal intensive care units (NICU), but there is little research on nurses' experiences of being in these enduring close relationships. The aim of this paper is to explore parents' and nurses' experiences of the close parent–nurse relationship when a premature child is hospitalized.
Method:  The design was exploratory with a hermeneutic approach. The methods used were participant observation and in-depth interviews with six mothers, six fathers and six nurses in a Norwegian 13-bed NICU. Eighteen individual interviews and 160 hours of observations were conducted over 27 weeks from 2003 to 2004. This study complies with the principles of the Declaration of Helsinki. The Regional Committee for Medical Research Ethics, the Ombudsman for Privacy in Research at the Norwegian Social Science Data Services and the hospital's research department approved the study protocol.
Results:  The NICU context is a technological environment where human interaction is a crucial issue. The character of the context and the ongoing interactions drive parents and nurses into close relationships. Closeness increases the emotional involvement and the boundary between the professional and the personal approach is threatened. The commitment of being close, combined with the emotional involvement, can be an emotional burden to both parents and nurses.
Conclusion:  Parent–nurse closeness in NICU is desirable; however, the emotional burden of this closeness seems to be seldom problematized. Awareness about the need to strike a balance between closeness and distance can positively influence parents' independence and nurses' ability to maintain professional relationships with their primary care parents.     

Parent perspectives of occupational therapy using a sensory integration approach.

This qualitative study explored parents' points of view regarding their children's participation in occupational therapy using a sensory integration approach. Data were collected through parent interviews and were analyzed using grounded theory methods. The parents' perceptions of the benefits of therapy for their children were categorized into three interrelated constructs: abilities, activities, and reconstruction of self-worth. For themselves, parents valued understanding their children's behavior in new ways, which facilitated a shift in expectations for themselves and their children, having their parenting experience validated, and being able to support and advocate for their children. Implications for family-centered intervention and future research are proposed.     

Chronic sorrow in parents of children with type 1 diabetes

Title.  Chronic sorrow in parents of children with type 1 diabetes.
Aim.  This paper reports on a study exploring parents' longer-term experiences of having a child with type 1 diabetes.
Background.  Parents of children with type 1 diabetes may experience a grief reaction at diagnosis similar to that normally associated with bereavement, but little is known about their long-term emotional adaptation. Chronic sorrow, a sustained but intermittent grief reaction, is identified in adults with diabetes but has not previously been explored in relation to parents.
Methodology.  In-depth interviews were conducted in 2007 with a convenience sample of 17 parents of children with type 1 diabetes 7–10 years after diagnosis. Data were explored within a theoretical framework of grief, loss, adaptation, and change.
Findings.  Parents had adapted to the needs of diabetes management but most had not 'come to terms' with the diagnosis. They experienced a resurgence of grief at critical times during their child's development and some, particularly mothers, became upset during their interviews, even though these took place 7–10 years after their child's diagnosis. Mothers elaborated more on their emotions than fathers, but continuing feelings associated with grief, such as anger and guilt, were expressed by both fathers and mothers.
Conclusion.  Greater understanding of parents' long-term emotional responses and recognition that grief may never resolve in these parents may enable healthcare professionals to provide appropriate and timely support at critical times.     

Parents' experiences of participation in the care of hospitalised children: a qualitative study

BACKGROUND: The introduction of unrestricted visiting hours has led to the encouragement of parents to stay with and participate in the care of their hospitalised child. In order to stay with the hospitalised child, parents have to be away from home or work, which in turn impacts on their personal and family life. However, no published study on parents' experiences of childcare participation during paediatric hospitalisation has been found for a Chinese population. OBJECTIVES: This study explored Chinese parents' experiences of their participation in taking care of their hospitalised child. DESIGN: A qualitative exploratory design was adopted to capture parents' experiences of participation. SETTINGS: The study was conducted in four paediatric wards of a regional acute general hospital in the New Territories, a major geographical region of Hong Kong. PARTICIPANTS: Nineteen parents (16 mothers and three fathers) who had a child hospitalised for more than 48 h and identified themselves as staying comparatively longer with the child than their counterpart were recruited. METHODS: Data were collection by tape-recorded semi-structured interview. RESULTS: Four major categories that illustrated parents' experiences of participation in childcare were identified: reasons for staying with the child, rescheduling of family's routine, expectations of nurses, and comments on facility provisions. The findings highlight parents' desire for participation in caring for their hospitalised child, their unexpressed needs for communication and concern about the non-monetary costs of participation. CONCLUSIONS: Most parents viewed accompanying their hospitalised child as an unconditional aspect of being a parent and had a strong desire for participation. Parents' need for communication and emotional support during their participation of childcare in paediatric unit are universal. As Chinese parents are passive in seeking help, nurses should take the initiative in assessing their needs and offering them support accordingly.     

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.     

Is information and communication technology an opportunity for parents of children with disabilities?

The main themes of this article are parents' expectations, experiences and influence of information and communication technology and children with disabilities. This article will focus on how parents of children with disabilities experience 7 months of computer activities together with their children. The results indicated that expectations comprise several aspects. The central theme is the parents' sincere hope that their children will be able to participate actively in society and have the same opportunities as other children.     

Parents' roles in using non-pharmacological methods in their child's postoperative pain alleviation

Increasingly nowadays, parents participate more fully in the care of their hospitalized children. The purpose of this study was to describe parents' utilization of selected non-pharmacological methods in relieving their hospitalized child's (aged 8-12 years) postoperative pain, and factors related to this function. Data were collected by a questionnaire survey completed by parents (n=192) with a child hospitalized on a paediatric surgical ward in the five university hospitals of Finland. The response rate was 90%. Results indicated that non-pharmacological methods, such as emotional support and helping with daily activities, were well utilized whereas cognitive-behavioural and physical methods were less frequently used strategies. Certain background factors specific to the parents and their hospitalized children were significantly related to the non-pharmacological methods used by the parents. The hospitalized child's gender, the time of the surgical procedure, and the parents' assessments of their child's pain intensity, were especially significantly related to many of these strategies. The findings of this study could be used in clinical practice to improve guidance provided to parents regarding interventions for children's pain relief.     

Seeking and obtaining mental health services: what do parents expect?

This study examined parents' expectations about seeking and obtaining mental health care. Using the Expectations of Mental Health Care survey, structured interviews were conducted with 235 parents with children between the ages of 5 and 19; most were African American. Expectations were assessed in four areas: treatment effectiveness, provider/client relationship, accessibility of mental health services, and social and cultural factors, e.g., stigma. Parents reported a number of negative expectations, and black parents had significantly more negative expectations than white parents. The findings suggest that attitudes and expectations may influence parents' decision to seek mental health care for their child.     

Tales of resistance and other emancipatory functions of storytelling

Title.  Tales of resistance and other emancipatory functions of storytelling.
Aim.  This paper is the report of a study to explore how the process of storytelling might facilitate women's emancipatory knowing, using examples from women's breastfeeding stories.
Background.  Storytelling, as an interactive process, can give women a way to explain pivotal life events, justify choices, examine reality and find meaning in experiences. Emancipatory functions of storytelling have been identified as contextual grounding, bonding with others, validating and affirming experiences, venting and catharsis, resisting oppression and educating others.
Method.  Secondary data analysis was conducted in 2008 on breastfeeding stories originally gathered from 13 women from 2002 to 2004 for a feminist hermeneutic study of maternal breastfeeding confidence. The stories were re-examined through the lens of the emancipatory functions of storytelling. Illustrations of contextual grounding, validating and affirming experiences, venting and catharsis and acts of resistance were found in the breastfeeding stories and presented as exemplars of emancipatory knowing.
Findings.  Women revealed the difficulties they encountered breastfeeding, transforming these experiences as they discovered their meaning. They described collisions that occurred when personal, familial, healthcare professionals' or cultural expectations differed from their experience. The stories suggested possible liberation from old ideologies about breastfeeding as women redefined the difficulties they encountered.
Conclusion.  Storytelling has potential as a simple, yet profound, and powerful emancipatory intervention which nurses can use to help women in their care make sense of and transform experiences of health and illness. Storytelling may have global implications for nursing practice and research.     

Parenting with a diagnosis bipolar disorder

Title.  Parenting with a diagnosis bipolar disorder.
Aim.  This paper is a report of a study of the ways in which bipolar disorder is constructed in the DSM-IV and popular texts, and how parents who have been diagnosed as having a bipolar disorder construct their role as parent.
Background.  Research into parenting and mental illness has typically taken a deficit-based approach that focuses on the risks to children when a parent has a mental illness. Literature that considers parenting specifically in the context of bipolar disorder retains a focus on the increased risk to their children of psychopathology or psychosocial difficulties.
Method.  A critical discourse analysis was conducted using interviews with five parents who had received a diagnosis of bipolar disorder. These interviews were examined in relation to the text that constructs the diagnosis of bipolar disorder (DSM-IV) and the popular texts from which the parents drew their understandings of parenting.
Findings.  The need to monitor and moderate emotions was a dominant theme that emerged from the analysis. For these parents this also involved teaching moderation to their children and monitoring it in their children's development. The consequence of this for these parents was a heightened sense of the need for self-surveillance.
Conclusion.  The challenge for people working with parents who have been diagnosed with a bipolar disorder is to support them to feel confident in the management of their bipolar disorder and their ability to parent effectively.     

The health of children with cerebral palsy and stress in their parents

Title.  The health of children with cerebral palsy and stress in their parents.
Aim.  This paper is a report of a study conducted to describe the health of children with cerebral palsy and investigate predictors of stress in their parents.
Background.  Children with severe cerebral palsy tend to have poorer health than their able-bodied peers, and their parents are more likely to be stressed and have poorer health.
Method.  A cross-sectional survey with home visits using standard questionnaires was administered to parents in 2004–05. A total of 102/199 (51%) children and parents participated. The children were compared with a normative sample.
Results.  Children with cerebral palsy had poorer physical health, and 79% of parents reported that their child had moderate to severe pain. Their poorer health, in comparison with the normal sample and measured by the Child Health Questionnaire, was related to feeding problems and seizures, general health perceptions to intellectual and feeding impairment, and family activities with severe motor, intellectual and feeding impairment. Poorer psychological well-being on the hyperactivity domain of the Strengths & Difficulties Questionnaire was related to feeding difficulties, on the prosocial domain to more severe forms of all child impairments, and on the social impairment scale to intellectual impairment. Children with psychological problems had statistically significantly increased odds (OR = 7·2, 95% CIs 2·6–20·3) of having parents with high stress.
Conclusion.  Children with cerebral palsy and associated impairments are at higher risk of poorer health and family well-being. A family-centred approach to the care of children with cerebral palsy and their families is essential to ensure both receive adequate care and support.     

Parents' experiences of collaboration with community healthcare professionals

Over the last decades there has been a reduction in the number of institutional beds in psychiatric care in Norway. This has led to more psychiatric patients being dependent on community care and consequently an increased need for collaboration with the parents of these patients. In most cases parents are an important source of support in helping patients manage their everyday life. The aim of this study was to explore how parents of adult psychiatric patients experience collaboration with health professionals in the community healthcare services. The data collection in this study is based on 12 interviews with six parents, and a qualitative analysis method was employed. Four themes emerged: (1) communication and relationship between parents and health professionals; (2) lack of information; (3) parents' participation in the treatment of their son or daughter; and (4) the need for guidance and support. It was reported that health professionals are suspicious of parental involvement and often refuse to allow them to participate in the care. Further research on parents' experiences of collaboration is necessary. The value of parents as an important source of support can be enhanced by means of increased collaboration.     

Strategies for feeling secure influence parents' participation in care

This study investigates what makes parents of hospitalized children feel secure and factors influencing their level of participation. It also studies, whether the degree to which parents participate affects their child's pain and sleep during hospitalization. Questionnaires were distributed to a series of parents whose children were discharged from two paediatric surgical wards and one paediatric medical-surgical ward at two university hospitals in Sweden. Parental security is almost equally distributed among three given alternatives: security derived from trusting that professionals know how to take care of the child; security derived from having control over what is happening to the child; and security derived from being the one who knows the child best. Depending upon the strategy chosen, parents want to participate at different levels in their child's care. The results indicate a relationship between parental participation and their estimation of their child's pain. The study confirms a pattern, developed in a previous study, in how parents adopt different strategies affecting their participation during their child's hospitalization. Some parents who wanted to participate in more aspects of their child's care seemed to think that their child had less pain than parents who preferred more limited participation.