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

Childhood chronic kidney disease stage 3–5 (CKD) is a complex set of disorders with multiple causes and complications; patients have the condition for life, and optimal management which is essential, requires skilled, home-based clinical care by parents, supported remotely by hospital-based professionals [1]. In previous research [2] parents identified a need for online information and support to supplement, not replace, the support they already received from the hospital-based multidisciplinary team (MDT). It is clear that increasing internet use by society [3‐9] has transformed NHS clients’ relationships with information making it more likely parents will search on-line for supplementary care-giving information, although unreliable, misleading and inaccurate sites exist and users must navigate through myth and hearsay [10]. Changing trends in internet use, a dearth of research on what parents think about existing formats of on-line information and support and a ‘digital divide' between those who do/do not have internet access [6] means, therefore, we need a detailed examination of what on-line support parents use, would like, and how they and their children think it could best be delivered to meet parents' variable needs [7, 8].

This paper reports on one aspect of a larger study that defined, developed and tested a CKD-specific Internet Health Communication Application (IHCA), the Online Parent Information and Support (OPIS) application. Qualitative interviews with parents were conducted after they had ‘road tested’ OPIS for 20 weeks. The results describe and discuss data emerging from these interviews. Data were analysed using Wenger’s social learning theory, Communities of Practice (CoP) [11‐17]. Learning occurs between group members engaged in joint enterprise to formulate a common set of solutions to familiar problems [13]. Communities of practice members share the same goals, interests, and repertoire of resources [11]; they draw on shared methods of "doing and undertaking tasks" to achieve their goals, using the same tools and common language to produce a unique body of knowledge [15, 18]. The CoP becomes the educator and/or educational environment [16].

Lesser & Storck [17] suggest CoPs generate social capital between members, creating organisational resources and interaction guidance. Community interactions create enhanced knowledge, trust, reciprocity, co-operation and behavioural changes that strengthen social capital and enhance CoP performance [19‐21]. These relationships do require nurturing to ensure a CoP’s effective function [22]. Members of CoPs ‘problem solve’ by using the principles of social capital: shared language, shared experiences, self-development, mutual trust, and identification with the community [23] to enhance the learning process. Flora [24] contends that CoPs best solve problems when they are diverse, inclusive, flexible, horizontal (linking with those of similar status), and vertical (linking with those of different status).

The flexibility of the CoP concept makes it ideal to adapt to healthcare management; these communities generate ideas for new services, practices and products [25]. Communities of Practice address complex dilemmas such as improving quality and safeguarding high standards of care by fostering an environment for clinical care excellence [26]. Therefore, the CoP concept has learning potential for health professionals [14, 27‐30] and parents. After conducting an extensive library search no published material citing Communities of Practice using parent perspectives in child-health care to elucidate the theory was found.

Le May [14] suggests that CoPs generate professional and human/patient capital. Participants transfer socio-cultural practices between group members, who then contribute to the overall development of capital for that community. Patients and families living with childhood long-term conditions such as CKD, develop capital by: understanding the way people view them or their child’s health; expressing satisfaction and expectation and contributing to changing healthcare services. Generating capital creates a store used by others, including patients, parents and professionals. Parent and patient story telling is increasingly important in enhancing health professional’s knowledge capital as they learn from stories [2, 14, 31]. The evolution of patient/family and care centred CoPs and how they develop capital is, therefore, fertile research ground [2, 32]. For the purposes of this paper we used a conceptual framework that to our knowledge has not previously been used in this context. It illuminates parents’ views and experiences of using OPIS in relation to their involvement with health professionals as they shared management of their child’s CKD. The published protocol for the wider study can be found at [33].

The study was approved by NHS Research Ethics Committee 11/NW/0268.

The data presented here are significant because families are expected to execute complex, home-based clinical care procedures that require high levels of competence [30, 32, 40‐44]; failure to safely carry out this care could affect their child’s clinical outcomes. However, there is a dearth of collaboratively developed, evidence based information to address their parents’ needs and preferences. There is also a lack of guidance for professionals on the factors that influence the development of communities of child-healthcare practice [2]. Three main components of CoPs as defined by Wenger, when integrated with the factors that affect development of the community have resulted in the Community of Child-healthcare Practice Model (Figure 1).

Connections between the CoP components of Experiencing, Doing and Becoming/belonging and the factors that influence development of communities of healthcare practice as identified by parents provide a conceptual framework that acts as a foundation to inform the development of parent information and support by healthcare professionals as they share responsibility for condition management.

The analysis presented here builds on previous research and helps to elucidate the components of CoC-HPs through parents’ accounts of their child’s care management [40], also revealing factors affecting the function of a CoC-HP.

When discussing ‘normalisation of illness and care’ and ‘acceptance and action’ parents in our study demonstrated a desire to manage, control, integrate change and create meaning early in their child’s CKD trajectory in order to incorporate the condition into their daily routine [2]. There are similarities between this analysis and the ‘Experiencing’ component of Wenger’s CoP concept; Wenger [11, 12] suggests that negotiating meaning (how we experience and engage with the world) requires sustained attention and readjustment by participants to achieve accomplishment. In our study, parents’ data described a CoC-HP sub component of ‘Gaining strength from their child’ that cements this hypothesis. Although children with CKD often require invasive and painful clinical procedures [1] the child’s reaction to these procedures helped parents to negotiate meaning from it, seeing their child’s health improve sometimes acted as a catalyst providing parents with the mental and physical stamina necessary for complex care management. Lave and Wenger [13] similarly find that learners begin their journey on the periphery of CoPs and move towards full participation as they negotiate their own place within that community. In the same way, when discussing ‘Building relationships’ parents’ accounts illuminated another feature of Lave and Wenger’s [13] assertion that community members are trying to negotiate meaning by learning from individuals they feel provide situated experience.

In the CoC-HP, parents talked of ‘Developing coping strategies’ to relieve the significant burden of care management [31, 41‐45]. Wenger [12] asserts that when there is too much dependence on the activity of a co-ordinator, in this case parent(s) act as CoC-HP coordinators, this burden of responsibility makes the CoC-HP vulnerable to dysfunction. Parents in our study, therefore, appeared to be remedying potential CoC-HP dysfunction by recognising the necessity to alleviate their burden of responsibility, learning to cope by implementing strategies. In addition, parents revealed the ‘Importance of care efficacy’ and ‘Fear of failing health’ which is akin to Wenger’s assertion [12] that co-ordinators of an enterprise are determined to be competent in it. Practice leads to competence in the enterprise and parents’ data revealed a determination to avoid CoC-HP dysfunction by achieving care efficacy that would contribute to a ‘managed wellness’ for their child.

Our description of ‘Sharing of Information’ is consistent with a key sub component of Wenger et al’s CoP [13] as they suggest it is essential to avoid community dysfunction. They claim that this is why avoiding complacency and incorporating new members into the CoC-HP are important factors when the community achieves expertise, so that progressive shared learning continues within the CoC-HP. New parents or health professionals providing their knowledge capital help to increase the CoC-HP store of knowledge capital, thus avoiding group stagnation and dysfunction. Health professionals also learn from parents, particularly as they establish their identities as expert carers; the ‘Negotiating with NHS Staff’ sub-component is illuminated by Wenger et al’s [13] sub component suggesting that peace and harmony are not essential in CoPs. It is beneficial if members achieve expertise by challenging and negotiating with each other, it indicates that parents are gaining expertise [2]. It therefore follows that if parents exhibit ‘Expertise in care’ as CoC-HP co-ordinators they exude confidence and knowledge and assert their expertise in the CoC-HP because they have learnt from professionals [46] and are confident expressing their identity.

Several factors were also identified in our data that affect CoC-HP development, sometimes causing dysfunction; these are discussed next. The ‘Service Transition’; and ‘Learning New Procedures’ sub components occur anywhere within the CKD trajectory [30]. Receiving a different service or learning new tasks, requires the negotiation of meaning and therefore, the Experiencing component of the CoC-HP begins again as parents and professionals adapt to the revised CoC-HP context [11], how this is accommodated affects the function of the CoC-HP [12]. The ‘Poor Parent Social Life’ sub-component occurs due to the time consuming care needs of the patient [2], this can lead to parents feeling overloaded. Wenger et al. suggest [12] if co-ordinators of enterprises, in this case parents, are not supported or given opportunities for self-expression it will lead to CoC-HP dysfunction. Parents in turn may display ‘Psycho Social Effects’; these emerge for many reasons including ‘Family chronic illness’ placing added care burden and responsibility on parents and the extended family, intensifying stress and the potential for CoC-HP dysfunction. It is essential for health professionals to appreciate individual family contexts when they enable the functioning of CoC-HPs [2, 18], for example, professionals may identify issues such as chronic sorrow [2, 47] affecting parental care management efficacy and leading to CoC-HP dysfunction [12].

Parents occasionally decide to practice ‘Shielding/Avoidance’ to protect their partner, themselves or family members from upsetting information; they may feel it helps to improve their CoC-HP function by preventing short term panic or hysteria [48]. However, ultimately it leads to complacency due to the clique of support that develops. Wenger et al. [12] identify cliques developing when participants are deliberately marginalised or excluded in the CoP, it leads inevitably to dysfunction. Some parent data revealed a ‘Language/Cultural’ barriers sub component that may exist in areas of cultural diversity; the cultural competence [46] of CoC-HPs’ health care provision may be affected. Health care organisations must provide care to patients with diverse values, beliefs and behaviours, tailoring delivery to meet patients’ social, cultural, and linguistic needs. Barriers to cultural competence include a lack of diversity in health care leadership and workforce; systems of care are poorly designed to meet the needs of diverse patient populations such that poor communication between providers and patients of different racial, ethnic, or cultural backgrounds can exist.

The strengths of this study include; a strong and multi-disciplinary study team comprising of clinical and research professionals and parents that enabled detailed, focused data capture. Face to face interviews helped to elicit greater depth of detail from parents [37]. Our purposive sampling approach meant our results specifically apply to the research cohort because parents from different ethnic and socio economic backgrounds participated, and 19 fathers (a group who are often under-represented in healthcare research) took part in the study [31, 49‐53]. Parent recollections were first hand experiences of care management; couple interviews enhanced discourse due to this double hermeneutic [54], as participants shared their mutual care experiences. Our analysis of the data gathered is potentially transferrable to CoC-HPs responsible for managing other long term conditions. After a search for the term ‘Communities of Child-healthcare Practice’ using a variety of library search tools, we concluded there is not a parent centred study that observed the abstract components of the COP model elucidating and locating them within empirically observed Communities of Child-healthcare Practice; therefore this paper complements and builds on existing Communities of Clinical [27, 28] and Nursing [29, 30] Practice literature.

Study limitations include the fact that sampling involved only one UK kidney unit, a sample that accounts for greater diversity of age, gender, cultural differences and socio-economic status would have enhanced the variety and depth of data collected. Data collection relied on verbal recollection of care provision by parents only. Our list of factors affecting CoC-HP development is not exhaustive and it is recommended that further research be carried out to reveal additional factors that exist and their effect on CoC-HP function. Future research could include a longitudinal, ethnographic study whereby researchers observe a range of CoC-HP members (for example, patients, parents, health professionals and family friends) over a period of time, involving a range of chronic childhood conditions in different health care settings.

When considering the CoC-HP components and sub components described and discussed in this paper, it seems prudent to suggest that further research should look at how the CoC-HP model and factors affecting it could be used to enhance health care practice, aiding professionals to further understand parents’ evolving care management needs [2]. Implications of these findings are important as improving services is important [55] and authors [32, 56] suggest that future health care funding needs to be directed towards effective, and away from ineffective interventions, and that contextual knowledge is needed. A CoC-HP model such as the one presented here (Figure 1) could, therefore, potentially help health professionals and inform their decisions when supporting parents.

When discussing their views on OPIS following a trial period, parents also revealed the existence and evolution of CoC-HP’s that focused on their child’s clinical care. Building on the established concept of CoP, our analysis has uncovered several components exhibiting both the evolution of the CoC-HP and also the factors that affect its development. Data revealed that there are distinctive CoC-HPs that evolve along the trajectory of a child’s CKD. This paper discusses the comparisons between CoPs and CoC-HPs and concludes that it is important to learn lessons from CoC-HPs. Important future research questions would address the following: can CoC-HPs be engineered to facilitate effective care?; what additional factors affect the development of CoC-HPs?, how do CoC-HPs evolve in different environments?