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.     

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.     

Parental grieving and perceptions regarding health care professionals' interventions.

The death of a neonate, infant, or child is a tragedy that greatly impacts on many individuals' lives. Nurses and other health-care professionals provide care for not only the dying child but also the grieving parents and families. It is imperative that health care professionals are cognizant of the components and intensity of parental grieving and the critical role that they must assume in supporting bereaved parents prior to, at the time of, and after the child's death. The purpose of this study was to measure the intensity of parental grieving and collect information from bereaved parents regarding their perception of health care professionals' interventions. The results indicated that bereaved parents' intensity of grieving scores were generally higher than those reported on the TRIG norms. In response to The Bereavement Questionnaire, they were able to identify what health care professionals did or said that was helpful or unhelpful before, during, and after their child's death.     

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.     

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.     

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.     

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.     

The experience of stress in parents of children hospitalized with long-term disabilities

This paper discusses parents' perceptions of their stress when their children are hospitalized with long-term disabilities. The study used a qualitative method. Data were collected with 40 parents through in-hospital interviews, and were analysed using the method of constant, comparative analysis. Parents' own interpretation of their stress experience is considered in relation to their perception of their role. The data suggest that the hospitalization of a child requires parents to make changes in their usual parenting role. In describing the nature of the changes required, parents identified the need to understand the illness experience; become familiar with the hospital environment; adapt to their changing relationship with the child and other family members; and negotiate with health professionals about their child's care. Verbatim accounts are used in this paper to illustrate parents' interpretations of their hospital experience. Parents perceive their role in their hospitalized child's care differently than health professionals do, and it would appear that much parental stress is attributable to the 'space' between health care workers' understanding of parents' experience, and parents' own comprehension. If nurses understood parents' own perception of their hospital-related stress better, more effective nursing care could be developed. Further research is needed in this important area.     

Rearing the Child Who Is Technology Dependent: Perceptions of Parents and Home Care Nurses

ISSUES AND PURPOSE. Most children who are dependent on technology for survival live with their families at home. This study explores the perceptions of parents and home care nurses regarding rearing the technology-dependent child.
DESIGN AND METHODS. In this qualitative study, interviews were conducted with 16 parents whose child is technology dependent and 15 registered nurses who provided home care.
RESULTS. Rearing the child who is technology dependent is similar to but different from raising other children. Parental communication and negotiation of child-rearing expectations with home care nurses is essential.
PRACTICE IMPLICATIONS. Improved collaboration and communication between parents and nurses may reduce parental stress and enhance development for children who are dependent on technology.     

Family involvement in end-of-life care in a paediatric intensive care unit

End-of-life care (ELC) on a paediatric intensive care unit (PICU) is a fundamental aspect of clinical practice and yet often remains a highly emotive and challenging issue. Every year, many children die in PICU often following the withdrawal of life-sustaining treatment, and as health professionals we have a duty to provide ELC that meets the needs of the dying child and their family. To achieve this, there is a growing emphasis on incorporating parental views on withdrawal of intensive care especially in time and place. Home care of the dying child enables the child to die at home in familiar surroundings and with the people who love them the most. This service is essentially child centred and acknowledges the unique and pivotal position that parents have in their child's life by empowering them to have control over the time and place of death. This is a vitally important aspect of end-of-life in PICU and underpins the ethos of this area of practice. We present a series of case reviews of patients cared for within a 12-month period, where intensive care was withdrawn distant from the PICU environment and address the challenges and considerations surrounding this area of practice.     

Minor illness education for parents of young children

BACKGROUND: A number of previous studies on minor illness have concentrated on nurse-led clinics and the role of nurse practitioners. This study examines the effect of a minor illness education programme which aimed to increase parents' confidence and knowledge in managing childhood illnesses. AIM: The primary aim of this study was to evaluate the effectiveness of a home visit and booklet in providing education to parents about minor infant illnesses. DESIGN: A randomized controlled trial was conducted. The intervention involved a home visit to discuss parents' concerns and provide advice and information, and a booklet advising parents what to do and when to consult about infant illnesses. METHOD: A total of 120 parents of 6 week old babies were identified over a 6 month period, using health visitors' caseloads, and randomized to an intervention group (60), that received a visit and a booklet, or a control group (60) that received standard care. Groups were compared on entry to the study and at 7 months, in terms of parental knowledge and confidence about childhood illnesses, the intended use of home care activities, intention to consult professionals and actual use of health services. Data were collected by self-completed questionnaire and case note review. FINDINGS: The educational intervention resulted in a reduction in visits to the child health clinic but had little effect on use of other services. Parents in the intervention group showed a general trend towards greater certainty about the home care options they would choose, and a reduction in intention to consult a doctor. However, they also indicated a feeling of reduced confidence and knowledge. CONCLUSION: The trial showed no effect on use of services but did demonstrate reduction in parents' intentions to consult a doctor, which appeared to be because of increased certainty about home care. However, it is of concern that they indicated feeling less confident and knowledgeable. It is not possible to clarify whether this represented anxiety that was constructive, enhancing decision-making or was destructive. Further work into the role of education in parental decision-making, anxiety levels and enhancement of confidence is required.     

Supporting 'expert' parents--professional support and families caring for a child with complex health care needs in the community

In the United Kingdom a new group of children with intensive and complex health care needs are now being cared for at home as a result of medical advances and government policies emphasising the community as the arena for care. This has led their parents to become involved in providing care of a highly technical and intensive nature that would previously have been considered to be the domain of professionals. In-depth qualitative interviews were conducted with parents and professionals to discover parents' and professionals' experiences of receiving and providing support in a context where parents rather than professionals are the expert caregivers. This paper describes the elements of professional 'support' that were particularly valued by parents and concludes with a discussion of the implications for professional education and roles.     

Supportive and palliative care needs of families of children with life-threatening illnesses in Western Australia: evidence to guide the development of a palliative care service

OBJECTIVE: To obtain feedback from families of children receiving palliative and supportive care about their care needs in hospital and in community settings. DESIGN: A two-phase combined quantitative and qualitative study. SETTING: Western Australia. PARTICIPANTS: 134 parents and 20 service providers. RESULTS: Analysis indicated the concept of palliative care is poorly understood by health professionals and by parents. Many families are affected emotionally, financially and physically by the burden of caring for children with life threatening or chronic conditions requiring complex care at home. Parents indicated the need for clear and honest information about their child's condition and prognosis throughout the trajectory of illness and perceived this had been lacking. Families required financial and practical assistance with providing care from their children at home. Parents also wanted more practical resources and information to assist with the management of their child's nutrition and pain, as well as support for their other children. The level of respite (in home and residential) was perceived to be insufficient and inequitable. Parents also required access to, and advice from, multidisciplinary health professionals when caring for their child at home. There was a perceived lack of coordination between community services and the hospital. CONCLUSION: Education of health professionals and parents regarding the concepts and introduction of palliative and supportive care is required. Care for children and their families should be coordinated by a multidisciplinary team in consultation with children and their families, and linked and integrated with the treating hospital in collaboration with community services. More inclusive criteria are required for community services including practical aids and respite care.     

A study of parental involvement in pediatric hospital care: implications for clinical practice

BACKGROUND: Although it has become common practice for parents to stay with their sick child in hospital, most hospitals lack routines and staff guidelines for involving parents in care processes and decisions. AIM: To gain a deeper understanding of factors that influence parental involvement and to clarify the parental role in the hospital care of chronically ill children. METHODS: Semistructured interviews with 14 parents of chronically ill children. RESULTS: Four themes were identified: support, professionalism, work environment, and responsibility. These themes describe the experience and perceptions of parents who regularly spend time in the hospital with their children. CONCLUSIONS: Clinical practices regarding parental involvement need to be established to optimize the hospital care of chronically ill children.     

Coping and social support of parents with a diabetic child

The purpose of this study is to describe and understand the parental coping and the social support received by the parents of diabetic children. The parental coping process was followed for a 4-week period after the diagnosis of diabetes. The parents of two girls, whose diabetes was diagnosed in early childhood, served as study subjects. Data were collected by interviewing and observing the parents over four separate periods. The data were analyzed by the time series and content analysis methods. Six phases of parental coping were identified: disbelief, lack of information and guilt, learning to care, normalization, uncertainty and reorganization. In the different phases of parental coping, the parents' experience of stress, coping strategies and sense of control varied. In the phase of disbelief, the parents tried to reject the child's diabetes by questioning the diagnosis. The initial information given to the parents regarding their child's diabetes proved to be important for parental coping. In the phase of lack of information and guilt, the parents sought reasons for their child's diabetes and felt guilty about it. As coping responses, the parents sought support from each other and from people who had experienced the same. In the learning to care phase, they recognized the demands caused by diabetes and took responsibility for the child's care. The parents appreciated supervision based on their problems. In the normalization phase, the parents prepared to return home with the diabetic child. Getting back to normal life was one of the most effective parental coping responses. In the uncertainty phase, the care to be given to the diabetic child changed the daily routines of the family. In the reorganization phase, the parents adapted to the diagnosis of diabetes and to the care of their diabetic child. The parents felt that the life of the family normalized and was able to be controlled.     

Learning to live with a child with diabetes - problems related to immigration and cross-cultural diabetes care

Diabetes in childhood is a serious chronic disease. Having a different ethnic background is described as a risk factor for poor metabolic control and quality of life. The aim of the study was to explore variations in how parents living as immigrants in Denmark and in their native country had perceived learning to live with a child with diabetes. This was done in order to identify potential problems related to immigration and cross-cultural care which should be considered in the provision of diabetes care to immigrant families. Data were collected by semi-structured interviews with Arabic-speaking immigrant parents of six children with diabetes in Denmark and matched Egyptian parents of six children in Cairo. The children were 7–16 years old and had been diagnosed in 2003–2005. Data were analysed using a phenomenographic approach, focussing on describing variations in the parents' perceptions of the phenomenon 'Learning to live with a child with diabetes'. The findings show that the parents in the two countries shared many reactions and concerns, but that they responded and were affected in different ways. Above all, the immigrant parents experienced their parental role and the life of the child with diabetes, in a more doubtful and negative way. The findings further indicate that the establishment of a trustful relationship between the immigrant families and the health-care professionals should be given high priority. The study concludes that parents with an immigrant background are likely to require special pedagogic, psychological and social support to learn to adapt and come to terms with the diagnosis of a chronic disease in a child.     

Parents of children with cancer: factors influencing their treatment decision making roles

This study examined the factors that parents identified as influencing their role in treatment decision making (TDM) for their child with cancer. Content analysis of qualitative data from semistructured interviews with 36 parents as part of a mixed-methods study revealed numerous themes related to parents' TDM roles. Factors that were frequently identified included: relationship with the physician, nature of communication, trust in the physician, parents' and physician's knowledge and experience, and importance of parental role. Parents acknowledged a strong sense of responsibility and feeling of "ownership" of their child. Parents initially lacked knowledge and experience, but acquiring these over time contributed to a more active participation in TDM.