Family centred care: a review of qualitative studies

Aim. To review systematically qualitative studies, which were found during a literature search for a Cochrane systematic review of the use of family centred care in children's hospitals. Background. Family centred care has become a cornerstone of paediatric practice, however, its effectiveness is not known. No single definition exists, rather a list of elements that constitute family centred care. However, it is recognized to involve the parents in care planning for a child in health services. A new definition is presented here. Methods. The papers were found in wide range of databases, by hand searching and by contacting the authors where necessary, using terms given in detail in the protocol in the Cochrane Library, in 2004. Qualitative studies could not be used for statistical analysis, but are still important to the review and so are described separately in this paper. Results. Negotiation between staff and families, perceptions held by both parents and staff roles influenced the delivery of family centred care. A sub-theme of cost of family centred care to families and staffs was discovered and this included both financial and emotional costs. Conclusion. Further research is needed to generate evidence about family centred care in situations arising from modern models of care in which family centred care is thought to be an inherent part, but which leave families with the care of sick children with little or no support. Relevance to clinical practice. Family centred care is said to be used widely in practice. More research is needed to ensure that is it being implemented correctly.

Hospital care of children in four countries

Background. While perceptions of parents and staff about care of hospitalized children have been explored in developed countries, little research has examined these in developing countries. Assumptions about family-centred care are often based on Western values, with little evidence of how cultural constructs affect care delivery in developing nations. Aim. This paper reports a study to provide evidence from which culturally-appropriate hospital care for children can be delivered. Methods. Using a rigorously devised and trialed questionnaire, attitudes of staff and parents about the way children are cared for in children's hospitals in four countries were examined and subjected to a four way analysis: parents and staff within and between developed and developing countries. Results. There were no questions where all parents and staff in both developed and developing country groups were in complete agreement. However, there was some indication that, while culture plays a major role in paediatric care delivery, basic concepts of family-centred care are similar. Conclusions. The findings are limited by the sampling strategy. Nevertheless, while differences were found between parents' and staff's expectations of the delivery of care to children in hospitals, similarities existed and the influence of culture cannot be ignored. Education programmes for staff and parents should reflect these influences to ensure the optimum delivery of family-centred care, regardless of where the hospital is situated.

Family violence: Walking the tight rope between maternal alienation and child safety

Mothers are often alienated from their children when child abuse is suspected or confirmed, whether she is the primary abuser of the child or not. An abusive or violent partner often initiates the process of maternal alienation from children as a control mechanism. When the co-occurrence of maternal and child abuse is not recognised, nurses and health professionals risk further alienating a mother from her children, which can have detrimental effects in both the short and long term. Evidence shows that when mothers are supported and have the necessary resources there is a reduction in the violence and abuse she and her children experience; this occurs even in situations where the mother is the primary abuser of her children. The family-centred care philosophy, which is widely accepted as the best approach to nursing care for children and their families, creates tension for nurses caring for children who are the victims of abuse as this care generally occurs away from the context of the family. This fragmented approach to caring for abused children can inadvertently undermine the mother-child relationship and further contribute to maternal alienation. This paper discusses the complexity of family violence for nurses negotiating the 'tight rope' between the prime concern for the safety of children and further contributing to maternal alienation, within a New Zealand context. The premise that restoration of the mother-child relationship is paramount for the long-term wellbeing of both the children and the mother provides the basis for discussing implications for nursing practice.

Who owns the child in hospital? A preliminary discussion

Aim. To 'own' a person is considered an infringement of human rights, but we suggest that concepts of ownership influence interactions between parents and staff when a child is admitted to hospital. This paper aims to stimulate debate and contains an explanation of the exploration of the literature for research and discussion of ownership of the child. Method. A wide variety of library indexes, databases and populist media were examined although it was impossible to examine all literature which may have contained references to this topic, and, apart from databases which contained abstracts in English, we could not include literature written in any language other than English, Swedish, and Icelandic. Findings. We found no research that examines how concepts of ownership of a child affects communication between health professionals and parents and, ultimately, the delivery of health care. This paper begins discussion on the issues. Discussion. Historical literature shows that ownership of humans has been a part of many cultures, and parents were once considered to own their children. Ownership of another has legal connotations, for instance in guardianship struggles of children during marriage breakup and in ethical debates over surrogacy and products of assisted conception. Within health care, it becomes a contentious issue in transplantation of body parts, in discourse on autonomy and informed consent, and for religious groups who refuse blood transfusions. In health care, models such as family centred care and partnership in care depend on positive communication between parents and staff. If a hospital staff member feels that he/she owns a child for whom he/she is caring, then conflict between the staff member and the parents over who has the 'best interests of the child' at heart is possible. Conclusion. We encourage debate about concepts of who owns the hospitalized child - the parents or the staff? Should it be argued at all? Is the whole concept of ownership of another, be it adult or child, the ethical antithesis to modern beliefs about human rights? Comment on this issue is invited.

The family costs of attending hospital outpatient appointments via videoconference and in person

We compared the costs incurred by families attending outpatient appointments at the Royal Children's Hospital (RCH) in Brisbane with those incurred by families who had a consultation via videoconference in their regional area. In each category 200 families were interviewed. The median time spent travelling for videoconferences was 30 min compared with 80 min for face-to-face appointments. Families interviewed in the outpatient department had travelled a median distance of 70 km, while those who had a videoconference at the local hospital had travelled only 20 km. It cost these families much more to attend an appointment at the RCH than to attend a videoconference. Ninety-six per cent of families (193) reported at least one of the following types of expense: 150 families had expenses related to parking (median A$10), 156 had fuel expenses (median A$10) and 122 reported costs related to meals purchased at the RCH (median A$10). Only 21 families who had their appointment via local videoconference reported any additional costs. Specialist appointments via videoconference were a more convenient and cheaper option for families living in regional areas of Queensland than the conventional method of attending outpatient appointments at the specialist hospital in Brisbane.

Physical activity promotion in primary care: Bridging the gap between research and practice

Background: Aflifle a growing literature supports the effectiveness of physical activity interventions delivered in the primary care setting, few studies have evaluated efforts to increase physician counseling on physical activity during routine practice (i.e., outside the context of controlled research). This paper reports the results of a dissemination trial of a primary care-based physical activity counseling intervention conducted within the context of a larger, multi-strategy, Australian community-based, physical activity intervention, the 10,000 Steps Rockhampton Project. Methods: All 23 general practices and 66 general practitioners (GPs, the Australian equivalent of family physicians) were invited to participate. Practice visits were made to consenting practices during which instruction in brief physical activity counseling was offered, along with physical activity promotion resources (print materials and pedometers). The evaluation, guided by the RE-AIM framework, included collection of process data, as well as pre-and post-inteivention data from a mailed GP survey, and data from the larger project's random-digit-dialed, community-based, cross-sectional telephone survey that was conducted in Rockhampton and a comparison community, Results: Ninety-one percent of practices were visited by 10,000 Steps staff and agreed to participate, with 58% of GPs present during the visits. General practitioner survey response rates were 67% (n =44/66 at baseline) and 71% (n =37/52, at 14-month follow-up). At follow-up, 62% had displayed the poster, 81% were using the brochures, and 70% had loaned pedometers to patients, although the number loaned was relatively small. No change was seen in GP self-report of the percentage of patients counseled on physical activity. However, data from the telephone surveys showed a 31% increase in the likelihood of recalling GP advice on physical activity in Rockhampton (95% confidence interval [CI]=1.11-1.54) compared to a 16% decrease (95% CI=0.68-1.04) in the comparison community. Conclusions: This dissemination study achieved high rates of GP uptake, reasonable levels of implementation, and a significant increase in the number of community residents counseled on physical activity. These results suggest that evidence-based primary care physical activity counseling protocols can be translated into routine practice, although the initial and ongoing investment of time to develop partnerships with relevant healthcare organizations, and the interest generated by the overall 10,000 Steps program should not be underestimated. ((C) 2004 American journal of Preventive Medicine.

Building family/general practice research capacity

To promote the range of interventions for building family/general practice (family medicine) research capacity, we describe successful international examples. Such examples of interventions that build research capacity focus on diseases and illness research, as well as process research; monitor the output of research in family/general practice (family medicine); increase the number of family medicine research journals; encourage and enable research skills acquisition (including making it part of professional training); strengthen the academic base; and promote research networks and collaborations. The responsibility for these interventions lies with the government, colleges and academies, and universities. There are exciting and varied methods of building research capacity in family medicine.

A feasibility study of email communication between the patient's family and the specialist burns team

We investigated whether the parents of burns patients could capture suitable clinical images with a digital camera and add the necessary text information to enable the paediatric burns team to provide follow-up care via email. Four families were involved in the study, each of whom sent regular email consultations for six months. The results were very encouraging. The burns team felt confident that the clinical information in 30 of the 32 email messages (94%) they received was accurate, although in I I of these 30 cases (37%) they stated that there was room for improvement (the quality was nonetheless adequate for clinical decision making). The study also showed that low-resolution images (average size 37 kByte) were satisfactory for diagnosis. Families were able to participate in the service without intensive training and support. The user survey showed that all four families found it easy and convenient to take the digital photographs and to participate in the study. The results suggest that the technique has potential as a low-cost telemedicine service in burns follow-up, and that it requires only modest investment in equipment, training and support.

Paediatric palliative home care with Internet-based video-phones: lessons learnt

We have designed and tested an Internet-based video-phone suitable for use in the homes of families in need of paediatric palliative care services. The equipment uses an ordinary telephone line and includes a PC, Web camera and modem housed in a custom-made box. In initial field testing, six clinical consultations were conducted in a one-month trial of the videophone with a family in receipt of palliative care services who were living in the outer suburbs of Brisbane. Problems with variability in call quality-namely audio and video freezing, and audio break-up-prompted further laboratory testing. We completed a programme of over 250 test calls. Fixing modem connection parameters to use the V.34 modulation protocol at a set bandwidth of 24 kbit/s improved connection stability and the reliability of the video-phone. In subsequent field testing 47 of 50 calls (94%) connected without problems. The freezes that did occur were brief (with greatly reduced packet loss) and had little effect on the ability to communicate, unlike the problems arising in the home testing. The low-bandwidth Internet-based video-phone we have developed provides a feasible means of doing telemedicine in the home.