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.     

Empirically based recommendations to support parents facing the dilemma of paediatric cadaver organ donation.

The aim of the study was to describe the challenges donor and non-donor parents encounter before, during, and after the organ donation decision, and to identify parents' needs and expectations from health care professionals. A further aim was to propose evidence-based recommendations for effectively introducing the option of donation, and supporting families through the grieving process. This study was undertaken as part of a larger research project investigating the experiences of Greek parents who consented or declined organ and tissue donation, using a qualitative methodology for data collection and analysis. The experiences of 22 Greek bereaved parents of 14 underage brain dead children were studied through semi-structured interviews. Parents' decision-making process was described as challenging and fraught with difficulties both before and after the donation period. Identified challenges were clustered into: (a) personal challenges, (b) conditions of organ request, and (c) interpersonal challenges. Parents' main concern following donation was the lack of information about transplantation outcomes. Findings led to a list of recommendations for nurses and other health professionals for approaching and supporting parents in making choices about paediatric organ donation that are appropriate to them, and for facilitating their adjustment to the sudden death of their underage child.     

Health professionals' beliefs related to parental involvement in ambulatory care: an international inquiry

Changes in health care delivery in Canada and Europe, especially the shift to ambulatory care, have modified the care that children and parents receive and have prompted the need for a partnership alliance. The objectives of this exploratory study were to identify Canadian and Belgian health professionals' beliefs and attitudes towards parental involvement in their child's ambulatory care and to determine if these beliefs varied according to cultural background. Health professionals from both countries generally were in favor of parental involvement in their child's care, but are uncertain about its advantages and disadvantages. Facilitators and barriers mentioned by the health care providers were related to parents' abilities or their attitudes toward partnership, and they also expressed a need for more education on the subject. Results of this study indicate that health professionals working in ambulatory care are not fully ready to utilize parents as true partners in their interventions with children and families. Staff education is an important step towards the establishment and maintenance of a real partnership.     

Parental participation and mismanagement: A qualitative study of child care in Iran

The purpose of this study was to explore parents' and nurses' experiences of parental participation in child care in hospitals in Iran. Using thematic analysis, the data were collected through interviewing 14 parents and 11 nurses from two pediatric hospitals. The results showed that four major themes emerged, including the necessity of a parent's presence, the unplanned and informal delegation of care to the parents (which itself had five subthemes: the parents as nurses, the delegation of care without sufficient and planned parental training, informal parent-to-parent support, the continuum of parents' willingness to participate, and the neglect of parents' needs), the inconsistency of care, and the parents as informal evaluators of care. Based on the study's findings, effective communication by nurses with parents is required. Nurses need to make an ongoing assessment of parents' wishes for involvement and negotiate care accordingly, with enough support and supervision to warrant quality of care.     

Oncology nurses' perceptions of their relations with family members in an ambulatory cancer care setting: a mixed methods study

Trends signal an increasing prevalence of people living through and beyond a cancer diagnosis with an enhanced reliance on ambulatory cancer care services and family caregiving. Despite this trend, there has been limited focus on nurses' experiences with providing support to families who care for patients in the community. For oncology nurses in ambulatory care settings, job satisfaction has decreased significantly as they are concerned with their ability to consistently provide safe and quality care to patients and their family. Although other studies indicated that the lack of time and limited resources are regrettably accepted aspects of nurses' work environments, our mixed methods small-scale study addressed how work environments still can meet the growing need for enhanced support and relations among nurses, patients, and families in ambulatory cancer care.     

Caring for parents of hospitalized children: a hidden area of nursing work

Children are the recognized patients when admitted to hospital but their parents can also present demands for care by nurses. Involvement in care can be stressful for parents, particularly when children are required to undergo unpleasant procedures. Parents turn to their families for support in the first instance but some also look for care from nurses. Consequently parents can present a need for care of themselves to nurses whose primary patients are children. In this paper the experiences of a group of parents who became co-clients of nurses are considered along with the views of nurses working on the same ward. The discussion arises out of a larger study of the experiences of the parents of children admitted to a surgical ward in a children's hospital. The principal purpose of the study was to examine parents' and nurses' perceptions of their participation in the care of hospitalized children. The work of caring for parents is found to be ad hoc and unpredictable. The implications of the study for practice and policy are considered.     

Parents' perceptions of care-giving to a child with attention deficit hyperactivity disorder: an exploratory study

Attention deficit hyperactivity disorder (ADHD) is the most common neurobehavioral childhood disorder in which parental care-giving is found very stressful. Limited qualitative research is found on their care-giving experiences. This study aimed to explore Chinese parents' experiences of care-giving to a child with ADHD at home. It was conducted at one Child and Adolescent Mental Health Unit in Hong Kong using qualitative exploratory approach. A purposive sample of 12 parents was recruited. Semi-structured interviews were conducted, each lasting about one hour. Content analysis was used to analyze the data. From the interview data, four themes were identified, including: concept of the illness, barriers to child care in ADHD, psychological effects in care-giving, and positive aspects of care-giving. The parents indicated a variety of life problems and health concerns in care-giving. The findings may help nurses understand the perceptions and barriers towards parental care of a child with ADHD in a Chinese population and consider parents' educational needs in care-giving.     

Ambulatory blood pressure monitoring and the primary care physician

The primary care physician welcomes technology that will reduce overlabelling and overtreatment of hypertension. Three concerns with respect to ambulatory blood pressure monitoring are: the clear identification of those patients who will benefit from monitoring; the potential for labelling patients prematurely as having technical abnormalities (i.e., 'hypervariability'), which may have little clinical significance; and the inaccessibility of ambulatory monitoring. To determine patient acceptance of ambulatory monitoring, a follow-up survey of 37 patients who used the Spacelab 5200 device was conducted. Twenty-four percent said they would not be agreeable to further monitoring. While newer devices may be less disruptive, the point is made that it is important to include patient assessments in the evaluation of these devices. A comparison is undertaken between ambulatory monitors and the more accessible self-monitoring devices which involve the patient to a greater degree in his/her own care.     

An integrated mid-range theory of postpartum family development: a guide for research and practice

AIM: This paper is a report of a study to identify parents' perceptions of postpartum family experiences. BACKGROUND: There is a growing worldwide emphasis on family support. Government policy in the United Kingdom advocates a family-centred approach in which a core universal postbirth service is offered to all families with additional support for parents of children with complex needs. Health visitors provide family postpartum care without an agreed theory directing or standardizing practice. There is a need to identify parental experiences to define family-centred care. METHOD: A qualitative, exploratory approach was undertaken using a purposive sample of 17 postpartum families. Data were collected in one region of Northern Ireland in 2001-2002. Participants' experiences and views were accessed during two focus groups with a total of seven participants, and six in-depth interviews. Thematic analysis was conducted. FINDINGS: One core theme, 'thriving and surviving', and three main themes, 'baby nurture', 'life changes', 'coping and adapting resources', were identified to describe how parents developed during the first 8-week postpartum. These were influenced by the physical, the psychosocial and the environmental factors. The identified themes were mapped together to form an Integrated Mid-Range Theory of Postpartum Parent Development. CONCLUSION: As parents need to negotiate successfully both present coping and future development during the postpartum period, there is a need for professionals to offer services that are orientated to holistic short- and long-term well-being. The findings, further to additional research, may be used by health visitors and other professionals to direct universal postpartum care.     

Parent-nurse interactions: care of hospitalized children

BACKGROUND: An essential component of quality nursing care is nurses' ability to work with parents in the hospital care of their children. However, changes in the health care environment have presented nurses with many new challenges, including meeting family-centred care expectations. AIM OF THE PAPER: To report a research study examining the experiences of parents who interacted with nurses in a hospital setting regarding the care of their children. METHODS: A qualitative approach was employed for this study. In-depth audiotaped interviews were conducted with eight parents representing seven families. Data collection was completed over a 7-month period in 2001. FINDINGS: Parents characterized their experiences with nurses caring for their children as interactions, and identified the elements of establishing rapport and sharing children's care as key to a positive perception of the interactions. These elements were influenced by parental expectations of nurses. Changes in nurses' approach were reported by parents as the children's conditions changed. CONCLUSION: Nurses were able to work with families in the hospital care of their children in ways that parents perceived as positive. However, in parents' views, their interactions with nurses did not constitute collaborative relationships. A deeper understanding of these interactions may provoke new thinking about how to promote an agency's philosophy, and how nurses enact this philosophy in practice.     

The journey to accepting support: how parents of profoundly disabled children experience support in their lives

Advances in medical knowledge and care have extended the lives of children with profound and multiple disabilities. In most cases it is the parents who meet the often complex and continual needs of their child with disabilities in their own home. This study explored the experience of support in the lives of such parents. The interpretive, hermeneutic phenomenology of Heidegger was employed to create a detailed and authentic account of the parents' experiences of support. Five interrelated themes emerged from data from in-depth interviews with six parents randomly selected from a purposive sample in a special school setting. The themes were: parents' feelings about support, the journey to accepting support, support as a loss, disability and the parent and the supportive relationship. Understanding the experience of support from the parent's perspective may lead to a consideration of flexible systems that challenge practice to ensure that supporters listen, learn, develop and deliver support in ways that are helpful.     

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.     

"A small piece of normal life". A qualitative study on health care for chronically ill children in home care

This qualitative study deals with the subjective experiences of families with chronically-ill children and with experiences of the External Care Services (EPD) in Berlin, who exclusively conduct home-care for children. Learning to cope with chronic illness is a process that often demands professional help that extends beyond the time spent in hospital. Essential for the analysis performed here are the systemic positions put forward by v. Uexküll, Wesiack (psychosomatic medicine) and Friedemann (nursing science) who stress the connection between health and relationship. The parents' positive experiences reflect the patient-oriented understanding of health-care developed by the takes in the families in many respects. Without the care offered by the EPD some children would have been torn out of their family environment due to hospitalizations. This would have resulted in the damaging of the family health.     

A critique of studies exploring the experiences and needs of parents of children admitted to paediatric intensive care units

This paper is based on a critique of studies exploring the experiences and needs of parents whose children are admitted to paediatric intensive care units (PICU). The majority of studies have been conducted in North America and attempt to quantify parental feelings and experiences. Few qualitative studies have been published. Major theoretical concerns are developed in relation to the validity of quantitative and qualitative methods of data collection which currently serve to inform nursing practice. While methodological issues abound, consistency across studies supports the importance of certain features of parents' experiences, such as being with their child and role conflict. None of the literature reviewed considered the specific needs of different ethnic and cultural groups, siblings, grandparents or the family as a unit. The views of fathers are also under-represented. Recommendations are made for future well-designed qualitative studies to be undertaken by experienced qualitative researchers from a holistic insider family perspective.     

Children with a long-term illness: parents' experiences of care

A diagnosis of a long-term illness in a child will bring on a major upheaval in the lives of the whole family involved and leads to a long-standing relationship with health care personnel. The purpose of this study was to describe parents' experiences with their child's illness and treatment and with their relationships with health professionals during the process of learning to care for their child. Data were collected by conducting open-ended interviews with parents (N = 11) whose child had been diagnosed with a physical long-term illness at least 1 year previously and were analyzed using qualitative content analysis. Parents' needs for information and support varied and consisted of different components in different phases of the process. During the diagnostic phase, parents were recipients of information; it was important for them to receive consistent empathetically provided information. In the next phase, parents, having gained experience of day-to-day home care, engaged in a change toward a two-way flow of information with the professionals; mutual trust was essential for the exchange of information needed for a child's proper care. Without a permanent relationship with health professionals, parents showed lack of trust in professionals' knowledge of their child's condition and care. Professionals' lack of trust in parents' expertise in their child's care was also problematic. Health professionals should lay the groundwork for a partnership in which both parties acknowledge each other's competencies; parents' needs ought to be continuously reassessed. A permanent relationship between families and health care personnel is required to achieve this.     

Chronic sorrow: parents' lived experience

The article compares the literature on chronic sorrow with the life experiences, memories, and opinions of two health care professionals who are the parents of a profoundly mentally retarded adult child. Both the literature and these parents' experiences confirm the lasting nature of chronic sorrow. A lifetime of ongoing losses experienced by these parents is compared with loss resulting from the death of a loved one. This sadness without end continues to be a force in the lives of these parents even though they no longer serve as caretakers for their child. The article recommends interventions that health care workers can use with parents of retarded children.