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 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.     

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.     

Danish parents' experiences when their new born or critically ill small child is transferred to the PICU-a qualitative study

The aim of this study was to describe Danish parents' experiences when their newborn or small child was critically ill. Thirteen parents were interviewed. Data were analysed using qualitative content analysis. The child's transfer to the paediatric intensive care unit (PICU) meant either help or death for the parents. The back transfer was experienced as joy and despair. The parents had confidence in most nurses, and they were kind, helpful, informative and capable. Less capable and distressed nurses made the parents feel uncomfortable and insecure. Parents need help and support during their child's transfer to and from the PICU. Critical care nurses have to discuss the policy of family-centred care.     

Parent or nurse? The experience of being the parent of a technology‐dependent child

AIMS: This paper reports a study exploring parents' experiences of caring for a child who is dependent on medical technology, and in particular of performing clinical procedures on their own children. BACKGROUND: A group of children with a continuing need for the support of medical technology have emerged in community settings as a result of medical advances and government policies. Caring for these children has a significant social and emotional impact on parents, because of their specialized and intensive care needs. Obtaining appropriate and coordinated home support services is problematic. METHODS: Grounded theory techniques were used, and in-depth interviews were conducted with the parents of 24 children. FINDINGS: Parents' accounts revealed that their constructions of parenting were shaped by the nature of their role in caring for their child and by the transformation of their homes by medical equipment and personnel. They described themselves as having a role that had both parenting and nursing dimensions. Parents managed this tension and defined their role and relationship to their child to be primarily one of parenting by differentiating parental care-giving and its underpinning knowledge from that of professionals, particularly nurses. CONCLUSIONS: Parenting a technology-dependent child alters the meaning of parenting. Professionals need to recognize that providing care has a substantial emotional dimension for parents, and that they need opportunities to discuss their feelings about caregiving and what it means for their parenting identity and their relationship with their child. A key professional nursing role will be giving emotional support and supporting parents' coping strategies. Parents' perceptions of nurses raise questions about whether nurses' caregiving is individualized to the needs of the child and family, and whether parental expertise is recognized.     

A descriptive study of the extent to which self-perceived needs of parents are met in paediatric units in Iceland

The purpose of this study was to identify the extent to which parents of 2-12-year-old hospitalized children perceive their needs to be met in paediatric units, what variables influence parents' perception, and whether parents need help from the hospital to meet their needs. Parents perceived that most of their needs were met fully or to some extent. The need to be able to stay with the child 24 h a day was perceived as fully met by all parents. Needs perceived as important but poorly met were as follows: written information about the child's health status, information about financial assistance and follow-up after discharge. Independent variables identified as being related to the extent to which individual needs were met were as follows: parents' age (p < or = 0.05), distance between home and hospital (p < or = 0.05), parents' education (p < or = 0.05), length of hospital stay (p < or = 0.01) and severity of child's illness (p < or = 0.01). Most parents perceived that they needed help from the hospital to meet their needs. These findings call for identification of effective interventions to meet parents' needs.     

Family involvement in the care of a hospitalised child: a questionnaire survey of Mozambican family caregivers

Background

Previous research from Western and Eastern countries shows that parents of a sick child want to be involved and to participate during a child's hospitalisation. However, the stay can be stressful and parents have their own needs. Conditions and cultural constructs are different among countries.No published study on parents’ or close family caregivers’ involvement and participation during paediatric hospitalization has been found for an African population.

Objective

The aim of this study was to articulate Mozambican family caregivers’ expressed needs, expectations and experiences of hospital care and hospital staff.

Setting and participants

The study was conducted at the Paediatric Clinic at the Central Hospital in Maputo, Mozambique. A sample of 100 family caregivers was chosen, representing one third of all family caregivers of hospitalised children over a one-month period.

Design and method

A cross-sectional study was conducted, using a questionnaire.

Results

Participating Mozambican family caregivers have, for the most part, a low level of education and reduced socio-economic conditions. This made the admission to and the time in hospital hard to cope with, and difficult for them to understand. The study showed that they were badly informed of anything to do with hospitalisation. They needed explanation and support to make the hospital situation less intimidating.Hospital staff's behaviour was to some extent characterised by attentiveness, kindness, and sympathy, but it was also shown that the family caregivers had experiences of communication difficulties and of being neglected.

Conclusion

The result, in this Sub-Saharan African context, shows that parents or family caregivers have a desire to be involved in the care of their hospitalised child, much the same as has been shown in studies in Western and Eastern countries. But Mozambican family caregivers’ expectations, needs and experiences are rooted not only in poverty, their household situation and the health system, but also in the hierarchical construct of their culture. All these factors influence their communication and relationships. Hospital staff is perceived to be superior. To empower the family caregivers to take part in the caring process in a cultural sensitive way is therefore of great importance.     

Parents' experiences of ambulatory care

In view of the recent rapid developments in paediatric daycare provision and ambulatory care a qualitative study was undertaken to ascertain parents' experiences of this service. A high proportion of the research literature addresses issues in surgical day care only. This study was undertaken to redress the balance. Eleven parents who accessed local ambulatory care services were selected then interviewed at home following discharge. The interviews were analysed using a framework based on grounded theory in order to generate explanations from a parent's perspective. It transpired that parents' experiences of their children's illness extended the bounds of the hospitalised period and professional support was important throughout. Parents who felt cared for in the social sense and received adequate information, appeared to report the more positive experiences and coped better.     

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.     

End-of-life palliative home care for children with cancer: A qualitative study on parents’ experiences

Background

There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents’ experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life.

Methods

The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings.

Results

Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory.

Conclusion

End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.     

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.     

An examination of the needs of parents of hospitalized children: comparing parents' and staff's perceptions

The needs of parents of hospitalized children have received some attention in the health literature, but few studies have compared parents' perceptions of needs with staff's ideas about parents' needs. The aim of this study was to examine differences between the perceptions of the needs of parents of hospitalized children held by staff - nurses, doctors and allied health staff, and parents in a 150-bed paediatric hospital in Sweden. The convenience sample comprised 132 staff - nurses, doctors and allied health staff and 115 parents of children admitted to all the wards except intensive care. Kristjánsdóttir's "needs of parents of hospitalized children" questionnaire (NPQ) was the instrument of choice and was modified slightly for use with staff. Results indicated significant differences in perceptions of the importance of different needs of parents, of how well they were being met in the hospital and how much help the parents needed to have them filled. Differences between parents' and staff's perceptions of the importance of parental needs were found in areas relating to psychosocial needs, but in general, in that hospital, the needs were being adequately met. The main differences between staff's and parents' results were in the degree of independence shown by parents in requiring help to have their needs met. This demonstrates either that parents are much more independent than appraised by staff, or, that parents are sometimes unaware of the level of assistance available.     

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.     

Fathers struggling for relevance in the care of their terminally ill child

Children with terminal illness receive substantial amounts of care from their parents within their home, a palliative care facility or general hospital. Whilst there is a long history of research exploring child and family experiences and coping styles within these settings, the focus has not been on fathers' participation in care-giving. This phenomenon can be explained by traditional sex-role socialisations whereby men are ostensibly conditioned as breadwinners and mothers remain embedded as the primary carers for children, particularly when illness arises. Nevertheless, nurses report that men do provide direct care-giving or seek to be more involved in caring for their child. This literature review offers opportunities for health professionals to reflect on the significance of gender in parenting the terminally ill child and to develop empathy for men experiencing difficulties in their role as care-givers. As there is little literature available on this topic, this paper portrays men's experiences and importantly the barriers they encounter in meeting their desire to care. The approach provides a suitable basis for developing a research agenda to promote competencies and relevance for fathers in their role as care-giver.     

Effectiveness of a tool to improve role negotiation and communication between parents and nurses

Family-centred care philosophies are promoted by policy makers and nurse leaders, although how this ideal is put in practice often remains unclear. Checklists or guidelines may be useful tools to assist nurses in determining a parent's desire for involvement in their child's care. AIM: To evaluate the effectiveness of a documentary tool designed to formalise role negotiation and improve communication between parents and nurses. METHODS: A quasi-experimental pre/post-intervention study design was used to determine nurses' perceptions of the effectiveness of a documentary tool in facilitating nurse-parent discussion about parental desire for involvement in the daily care activities of their child while in hospital. Nurses in randomly selected wards were assigned to usual practice (control group) or the implementation of a Negotiated Care Tool (intervention group) during a three-month period. RESULTS: Pre- and post-intervention surveys were completed by 69 nurses. The tool was associated with attitudinal changes in the desired direction for 12 of the 24 nurse responses: nurses in the intervention group were significantly more likely to include parents in decision making (p = 0.007); encourage parents to ask questions during their child's hospital stay (p = 0.005); and invite extended family members to participate in care with parental permission (p = 0.03). CONCLUSION: The Negotiated Care Tool raised staff awareness of the importance of effective communication and negotiation of care with parents in busy clinical practice areas. Transparent communication and negotiation of roles between nurses and parents are integral to family-centred care provision.     

Implementing family-centred care: an exploration of the beliefs and practices of paediatric nurses.

OBJECTIVE: This study explored paediatric nurses' perceptions of how they include and involve parents in the care of hospitalised children. DESIGN: This qualitative study used individual unstructured interviews to gather data, the data was analysed using thematic coding. SETTING: Paediatric wards within two regional area health services of New South Wales, Australia. SUBJECTS: Fourteen paediatric nurses were asked to describe their beliefs and practices regarding the clinical application of family-centred care. MAIN OUTCOME MEASURE: Paediatric nurses' beliefs and practices about family-centred care were explored in an effort to explain how the concept was implemented. RESULTS: The findings are presented as four interconnected themes. The first describes how participants either allocated tasks to parents or retained them, the second relates to the nurses' professional identity, the third theme identifies barriers and constraints to the implementation of family-centred care, while the fourth describes the nurses' beliefs about their responsibilities when delivering family-centred care. CONCLUSIONS: Together these findings suggest that while nurses endorse the concept of family-centred care, the implementation into practice is more problematic. While it is not possible to generalise these findings to other paediatric nurses, the authors believe the insight gained will resonate with paediatric nurses internationally. The findings from this study are being used as the basis for the development of clinical practice guidelines to assist paediatric nurses to more consistently apply the concepts of family-centred care to their practice.