A peer-driven community-based supervisory model: development from an evaluation of an ethics workshop for doctoral students undertaking research with children

Differing doctoral supervision models currently exist. Three key conceptual supervisory models relevant to doctoral students from within the healthcare professions were identified from a literature review: the ‘functional pre-modern’ model, the ‘team’ model and the ‘community group’ model. However, whilst these models exist, for the most part, supervision remains embedded within home academic institutions. Method and material: (1) An extensive review of the literature was undertaken, drawing on: Australian Education Index, British Education Index, the British Humanities Index, the British Nursing Index, EBSCOHOST EJS and Google™ Scholar; (2) an outcome-oriented evaluation of a workshop delivered to seven current or prospective doctoral candidates from within the health care professions and researching with children and/or young people, concerning the conduct of ethical research was undertaken Results: Five key categories related to ‘best things about the day’ were identified from a four-item, anonymous questionnaire appraising the day. These concerned: round table discussions, plenary seminars, workshop organisation, value of experiential learning and future workshop opportunities. From these themes an ‘innovative’ peer-driven, community based model of doctoral supervision was developed that is extrinsic to and complements the supervision provided in students’ home academic institutions. Conclusions: The innovative supervisory model developed through an outcome-oriented evaluation of a workshop for doctoral candidates has particular relevance for doctoral students who are healthcare professionals generally and nurses in particular, especially those studying in highly specialised areas where there may be a dearth of subject specific supervisors

Collaborating to develop an online resource for parents

Background The development and evaluation of Online Parent Information and Support (OPIS) involved the creation of a web resource for parents who needed support for the home-based management of their child's chronic kidney disease (CKD)

Children and young people’s experiences and perceptions of self-management of type 1 diabetes: A qualitative meta-synthesis

The aim of this review was to conduct a meta-synthesis of the experiences and perceptions of self-management of type 1 diabetes of children and young people living with type 1 diabetes (CYPDs). Six databases were systematically searched for studies with qualitative findings relevant to CYPDs’ (aged 8–18 years) experiences of self-management. A thematic synthesis approach was used to combine articles and identify analytical themes. Forty articles met the inclusion criteria. Two analytical themes important to CYPDs’ experiences and perceptions of self-management were identified: (1) negotiating independence and (2) feeling in control. The synthesis contributes to knowledge on contextual factors underpinning self-management and what facilitates or impedes transition towards autonomous self-management for CYPDs

Supporting children and young people to assume responsibility from their parents for the self-management of their long-term condition: An integrative review

© 2019 John Wiley & Sons Ltd Background: Children and young people with long-term conditions (LTCs) are usually dependent on, or share management with, their families and are expected to develop self-management skills as they mature. However, during adolescence, young people can find it challenging to follow prescribed treatment regimens resulting in poor clinical outcomes. Though reviews have looked at children's and parents' experiences of self-management, none have explicitly examined the parent-to-child transfer of self-management responsibility. Methods: An integrative review was conducted with the aim of exploring the parent-to-child transfer of LTC self-management responsibility, through addressing two questions: (a) How do children assume responsibility from their parents for self-management of their LTC? (b) What influences the parent-to-child transfer of this responsibility? Eight databases were searched for papers published from 1995 to 2017. Methodological quality was assessed; included papers were synthesized to identify themes. Results: Twenty-nine papers were identified. Most papers used qualitative designs and focused on children with diabetes. Participants were predominantly children and/or parents; only two studies included health professionals. Assuming self-management responsibility was viewed as part of normal development but was rarely explored within the context of the child gaining independence in other areas of their life. Children and parents adopted strategies to help the transfer, but there was limited evidence around health professionals' roles and ambivalence around what was helpful. There was a lack of clarity over whether children and parents were aiming for shared management, or self-management, and whether this was a realistic or desired goal for families. Multiple factors such as the child, family, social networks, health professional, and LTC influenced how a child assumed responsibility. Conclusions: Evidence suggests that the parent-to-child transfer of self-management responsibility is a complex, individualized process. Further research across childhood LTCs is needed to explore children's, parents', and professionals' views on this process and what support families require as responsibilities change

Using focused ethnography in paediatric settings to explore professionals’ and parents’ attitudes towards expertise in managing chronic kidney disease stage 3–5

Background: Interactions between parents and healthcare professionals are essential when parents of children with chronic conditions are learning to share expertise about clinical care, but limited evidence exists on how they actually interact. This paper discusses the use of focused ethnography in paediatric settings as an effective means of exploring attitudes towards expertise. Methods: The paper draws on repeated observations, interviews and field-notes involving the parents of six children with chronic kidney disease, and 28 healthcare professionals at two, tertiary, children's hospital-based units. Data were analysed using the Framework approach and the concepts of expertise and self-management. Results: Our study highlighted rewards and challenges associated with focused ethnography in this context. Rewards included the ability to gain a richer understanding of the complex phenomena of mutual acknowledgement of expertise that occurs during parent/ healthcare professional interactions. Challenges related to gaining informed consent and ensuring potential participants had an adequate understanding of the purpose of the study. Two dimensions of parental expertise around their child (personal and clinical) were evident in our data. Parents' and professionals' expertise about the child and their condition was acknowledged and exchanged as parents learnt to share clinical-care with the multi-disciplinary team. Healthcare professionals acknowledged parents' need to understand aspects of each of the eight disciplinary knowledge bases relating to their child' s management and recognised parents' expert knowledge of their child, found ways to mobilise this knowledge, and wove parents' expertise into the management plan. Parents spoke of the degree to which their own expert knowledge of their child complemented healthcare professionals' clinical knowledge. However, ambivalence around expertise was evident as both parents and healthcare professionals questioned what the expertise was, and who the expert was. Our discussion focuses on the ways healthcare professionals and parents share expertise around the child's condition as parents take on responsibility for home-based clinical care. Conclusions: Our findings point to focused ethnography being an effective way of capturing new insights into parent and professional interactions in a paediatric setting and mutual acknowledgement of expertise; these insights may help redress the reported limitations of previous, retrospective studies

Designing a web-application to support home-based care of childhood CKD stages 3-5: Qualitative study of family and professional preferences

Background: There is a lack of online, evidence-based information and resources to support home-based care of childhood CKD stages 3-5. Methods. Qualitative interviews were undertaken with parents, patients and professionals to explore their views on content of the proposed online parent information and support (OPIS) web-application. Data were analysed using Framework Analysis, guided by the concept of Self-efficacy. Results: 32 parents, 26 patients and 12 professionals were interviewed. All groups wanted an application that explains, demonstrates, and enables parental clinical care-giving, with condition-specific, continously available, reliable, accessible material and a closed communication system to enable contact between families living with CKD. Professionals advocated a regularly updated application to empower parents to make informed health-care decisions. To address these requirements, key web-application components were defined as: (i) Clinical care-giving support (information on treatment regimens, video-learning tools, condition-specific cartoons/puzzles, and a question and answer area) and (ii) Psychosocial support for care-giving (social-networking, case studies, managing stress, and enhancing families' health-care experiences). Conclusions: Developing a web-application that meets parents' information and support needs will maximise its utility, thereby augmenting parents' self-efficacy for CKD caregiving, and optimising outcomes. Self-efficacy theory provides a schema for how parents' self-efficacy beliefs about management of their child's CKD could potentially be promoted by OPIS. © 2014 Swallow et al.; licensee BioMed Central Ltd

Emerging communities of child-healthcare practice in the management of long-term conditions such as chronic kidney disease: Qualitative study of parents' accounts

Background: Parents of children and young people with long-term conditions who need to deliver clinical care to their child at home with remote support from hospital-based professionals, often search the internet for care-giving information. However, there is little evidence that the information available online was developed and evaluated with parents or that it acknowledges the communities of practice that exist as parents and healthcare professionals share responsibility for condition management. Methods. The data reported here are part of a wider study that developed and tested a condition-specific, online parent information and support application with children and young people with chronic-kidney disease, parents and professionals. Semi-structured interviews were conducted with 19 fathers and 24 mothers who had recently tested the novel application. Data were analysed using Framework Analysis and the Communities of Practice concept. Results: Evolving communities of child-healthcare practice were identified comprising three components and several sub components: (1) Experiencing (parents making sense of clinical tasks) through Normalising care, Normalising illness, Acceptance & action, Gaining strength from the affected child and Building relationships to formalise a routine; (2) Doing (Parents executing tasks according to their individual skills) illustrated by Developing coping strategies, Importance of parents' efficacy of care and Fear of the child's health failing; and (3) Belonging/Becoming (Parents defining task and group members' worth and creating a personal identity within the community) consisting of Information sharing, Negotiation with health professionals and Achieving expertise in care. Parents also recalled factors affecting the development of their respective communities of healthcare practice; these included Service transition, Poor parent social life, Psycho-social affects, Family chronic illness, Difficulty in learning new procedures, Shielding and avoidance, and Language and cultural barriers. Health care professionals will benefit from using the communities of child-healthcare practice model when they support parents of children with chronic kidney disease. Conclusions: Understanding some of the factors that may influence the development of communities of child-healthcare practice will help professionals to tailor information and support for parents learning to manage their child's healthcare. Our results are potentially transferrable to professionals managing the care of children and young people with other long-term conditions. © 2014 Carolan et al.; licensee BioMed Central Ltd

Multidisciplinary teams, and parents, negotiating common ground in shared-care of children with long-term conditions: A mixed methods study

Background: Limited negotiation around care decisions is believed to undermine collaborative working between parents of children with long-term conditions and professionals, but there is little evidence of how they actually negotiate their respective roles. Using chronic kidney disease as an exemplar this paper reports on a multi-method study of social interaction between multidisciplinary teams and parents as they shared clinical care. Methods. Phases 1 and 2: a telephone survey mapping multidisciplinary teams' parent-educative activities, and qualitative interviews with 112 professionals (Clinical-psychologists, Dietitians, Doctors, Nurses, Play-specialists, Pharmacists, Therapists and Social-workers) exploring their accounts of parent-teaching in the 12 British children's kidney units. Phase 3: six ethnographic case studies in two units involving observations of professional/parent interactions during shared-care, and individual interviews. We used an analytical framework based on concepts drawn from Communities of Practice and Activity Theory. Results: Professionals spoke of the challenge of explaining to each other how they are aware of parents' understanding of clinical knowledge, and described three patterns of parent-educative activity that were common across MDTs: Engaging parents in shared practice; Knowledge exchange and role negotiation, and Promoting common ground. Over time, professionals had developed a shared repertoire of tools to support their negotiations with parents that helped them accomplish common ground during the practice of shared-care. We observed mutual engagement between professionals and parents where a common understanding of the joint enterprise of clinical caring was negotiated. Conclusions: For professionals, making implicit knowledge explicit is important as it can provide them with a language through which to articulate more clearly to each other what is the basis of their intuition-based hunches about parents' support needs, and may help them to negotiate with parents and accelerate parents' learning about shared caring. Our methodology and results are potentially transferrable to shared management of other conditions. © 2013 Swallow et al.; licensee BioMed Central Ltd

Mothers' coping in chronic childhood illness: The effect of presymptomatic diagnosis of vesicoureteric reflux

Aims of the study were to. Assess coping strategies of mothers who have a child with vesicoureteric reflex (VUR), determine mothers' understanding of VUR before and after diagnosis, assess mothers' perceived needs for support when coping with their child's VUR and compare the above aims between two groups of mothers of children with VUR. Background. Vesicoureteric reflex (VUR) is a chronic, congenital, asymptomatic condition which when combined with urinary tract infection (UTI) can result in reflux nephorpathy (RN), contributing to 20% of kidney transplants. Unfortunately, VUR is not usually diagnosed until after proven UTI, by which time RN has often developed. However, recent research, the familial ureteric reflux study (FURS) identified for the first time VUR in a cohort of new-borns investigated because of family history. Early detection and prompt treatment of UTI in the presence of VUR may significantly reduce the development of RN but this requires extreme vigilance by mothers, who are usually the primary carers. Design. As mothers' experiences and perceptions were the focus, a qualitative design using semistructured, in-depth interviews was used. After obtaining ethical approval, mothers of 15 children with VUR diagnosed presymptomatically (i.e. after particpation in the FUR study) and mothers of 14 children with VUR diagnosed post symptomatically were selected using a theoretical sampling matrix. All mothers gave informed consent and interviews were taped, transcribed and analysed using the 'Framework' technique. Findings. Findings for both groups fall into three discrete phases: the prediagnostic, diagnostic and postdiagnostic. Analysis showed that mothers in the post symptomatic diagnosis group experienced most problems in coping, particularly because of difficulty in engaging medical intervention in the prediagnostic phase. Generally, mothers in the presymptomatic group coped well apart from those who themselves had VUR and/or RN who expressed guilt about their child inheriting the condition and consequently difficulty in coping. Conclusion. Early diagnosis of VUR improved mothers' coping. However, both groups identified a major need for improved information provision and support to assist coping with the sustained uncertainty of the condition

Patient experiences of cardiac surgery and nursing care: a narrative review

Aim: The aim of the Narrative Review was to explore the patient experience following cardiac surgery and nursing care. Methodology: A Narrative Review was used to integrate the findings of different types of evidence in order to gain an understanding of the patient's experience of cardiac surgery and nursing care. Three key databases were searched; Cumulative Index to Nursing Allied Health Literature (CINHAL), British Nursing Index (BNI) and Medline. The review involved critiquing the methodological quality of included studies, thematic analysis and synthesis of findings. Conclusions: Patients experience physical discomfort and pain following cardiac surgery. The psychological experience of cardiac surgery is associated with negative emotions which are mostly related to weaning from mechanical ventilation and communication difficulties. Support from family is of high importance but patients value the support from other cardiac surgery patients. No studies intended to explore the experience of nursing care following cardiac surgery. However, patient experiences of nursing care were reported across the studies. Recommendations: Future research should specifically explore the experience of nursing care following cardiac surgery. Current PREMs Questionnaires are a step forward in patient experience measurement for cardiac surgery; however they are limited by their feedback method. Service improvement initiatives should utilise both quantitative and qualitative data collection methods to obtain a multidimensional view of the patient experience