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Background: Care of children and young people (children) in the 12 children’s kidney units in England, Scotland and Wales is managed by multidisciplinary teams (MDTs) comprising professionals such as clinical psychologists, dieticians, doctors, nurses, pharmacists, play workers, social workers, and therapists. Within the constraints of treatment regimens it is in children’s best interests for them to be cared for at home whenever possible1-4. Professionals therefore, spend considerable time teaching parents from diverse socioeconomic and educational backgrounds, with different health care experiences and learning needs, to deliver home-based clinical care to their children. Often isolated and overwhelmed, parents may look to health professionals for help with care, while professionals often act as teachers as well as care providers5. Although studies of chronic disease management acknowledge issues such as: the ‘work’ associated with parental care giving6, the ways families adjust7, and the fact fathers would like more time to learn about disease management8, there is little research evidence on the ways parents actually learn to take responsibility for and deliver clinical care at home, or the way professionals teach parents to do this. Nevertheless, parents:…perform the vast majority of care-giving, including tasks that are complex and demanding9:13. If they are unsure they may not maintain treatment regimens or recognise subtle clinical changes10 11 so negative outcomes such as undetected urinary tract infections, damaged kidneys, impaired kidney function, relapse of the condition, and transplant rejection may occur. All of these carry significant emotional, physical and financial costs for families 4 12, and have financial implications for the NHS9. Aim: to obtain a detailed understand of the way MDTs teach parents and carers to become home-based clinical carers, and the way parents learn to care for children’s long term kidney conditions.Methods: A mixed method, longitudinal, two phased design allowed us to achieve depth and breadth in our analysis.Phase I, strand i: An administered questionnaire (a survey designed to map the shape of current services and approaches to teaching parents).Phase I, strand ii: Individual or group focussed qualitative interviews with 112 MDT members to explore with them the range of care-giving skills/ and information they relay to parents, and the formal/informal teaching interventions they use. Phase II: Using an ethnographic approach we undertook six observational case studies of children with long term kidney conditions whose parents were learning new clinical skills to deliver at home. Children were purposively sampled to achieve maximum variation in regard to age, gender and ethnicity. After parents (and where appropriate children or other informal carers) were recruited, we used snowball sampling to identify and recruit 28 professionals (nurses, doctors, dieticians, play specialists, social workers, therapists, pharmacists) who were involved in managing the children’s clinical care, and teaching parents the skills needed for home based management. Each case study lasted six months and data obtained included: 86 observations 41 interviews Field-notes Case-note reviewsSurvey data were managed using Excel and descriptive statistics were produced. Qualitative data were analysed using Framework Technique. Key findings: • In Phase I most professionals were involved in teaching parents and reinforcing other professionals’ teaching. • Eight disciplines (clinical psychologists, dieticians, doctors, nurses, pharmacists, play workers, social workers, therapists) described how they share discipline-specific knowledge with parents to promote safe and effective home based clinical care • When discussing parent education professionals described two distinct identities: the inter-disciplinary ‘we’ (e.g. social workers or doctors) and the intra-disciplinary ‘we’ (i.e. as the MDT)• Distributed expertise was evident within all of the MDTs, this:• Means that different professionals offer different kinds of expertise to the co-management of a child’s condition; • Explains the team’s capacity (rather than just the individual's) to care for the children’s CKD.• Three parent-educative functions were identified in professionals’ retrospective accounts:a) Initiating parents’ knowledge and skill development; b) promoting and monitoring parents’ knowledge and skill development, andc) multidisciplinary team workingthese informed Phase II data collection/analysis• In Phase II a wide range of teaching processes, and interactions between professionals, children, parents and other carers were observed; and discussed during qualitative interviews • Four categories emerged as responses to shared MDT/parent management: 1-MDTs promoting parents’ clinical roles; 2-Parents cautious acceptance of clinical responsibilities; 3-Blended expertise around the child; 4-Ambivalence within teaching and learning encounters• There was evidence that professionals acknowledged parents’ expertise around their own child, and actively promoted parents’ clinical expertise. • Although there was little evidence of professionals negotiating with parents about taking on clinical responsibilities, there were examples of parents being offered choices about specific aspects of care, e.g. in-centre dialysis vs. home dialysis; or inserting the NG tube at home vs going to local hospital • Professionals worked hard to try to accommodate parents’ learning needs and care delivery preferences within the constraints of the clinical regimen. • Although parents appeared to ‘cautiously accept’ clinical care as part of their ‘parenting role’, their clinical expertise was generally developed through necessity rather than choice. • Professionals were often challenged by the need to determine parents’ individual learning needs, and individualise skill development.• Parents valued professionals’ efforts to continually tailor teaching activities to parents’ individual needs.• Parents and professionals experienced some ambivalence when engaging in teaching and learning, this arose early in the case studies and continued to appear around a variety of issues.Recommendations:Professionals and parents have developed considerable expertise which ought to be harnessed and made available to support those who are new to renal care. The following would offer professionals an optimum, evidence based understanding of the way parents learn to manage CKD, and, offer parents evidence based material to assist their clinical roles,: 1. A sequence of exemplar case studies could be developed from our anonymised data; these could help share the experiences of parents with professionals, and vice versa. Their purpose would be to support parents and professionals to develop a rounded understanding of the experience of living with CKD and its consequences (e.g. ‘taking a dialysis machine home’, using an NG tube to feed your child)2. A series of ‘top teaching tips’ and ‘top learning tips’ leaflets could be developed from the data for circulation to wards, clinics, parent web sites and possibly the KKR web site?. These could include ‘typical medical language you might hear and what it means’ or ‘common turns of phrase [e.g. colloquialisms, metaphors, analogies] that are used in CKD management, and what they mean’3. A leaflet/web based resource explaining the range of ‘distributed expertise’ within the renal MDT, what the roles and titles mean for families4. Parents ought to be routinely sign-posted to resources when available5. A range of UK workshops where professionals and family members could jointly generate educational material and action plans for tailoring support to parents. The materials could include: e.g. parents’ experiences of the clinical role, symptom management, recognising when to seek help, how to seek help6. A national conference or series of seminars for local health care staff who might need to support management of a local child with CKD; the workshop could draw on our data and enable discussion with staff who are interested and able to attend 7. Educational staff in higher education institutions responsible for developing curriculum for the professionals represented in our data could be provided with key findings from the study in order that the evidence can be fed into practice via new recruits8. Further research is needed that builds on this study, working with families and MDT members to develop and evaluate a parent learning-needs assessment tool that could promote a standardised, MDT approach to assessing parents’ individual learning needs and preferences9. Further study is needed to assess the cost effectiveness of home vs hospital care and the cost to parents10. Although a small body of literature focuses on measuring parent-child shared management of chronic conditions 88, children with CKD were not represented, data collection was limited to an un-validated, postal questionnaire and data did not explore parent-professional interactions as our study has done, thereby suggesting a need for a large mixed methods study to measure shared parent-child management in CKD care.More detailed research is needed that investigates the individual contribution each discipline makes, the wider impact of renal MDT support on parents’ clinical role development, and a time line to illustrate the processes by which MDT members teach and parents learn. |
