Parenting a child with chronic illness as they transition into adulthood:a systematic review and thematic synthesis of parents’ experiences

Objective - To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services. Methods - Five databases were systematically searched for qualitative articles examining parents’ views and experiences of their child’s healthcare transition. Papers were quality assessed and thematically synthesised. Results - Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child’s progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child’s readiness, wellness, competence and long-term condition impacted on the child’ progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child’s growing independence. Conclusion - Parents can be key facilitators of their child’s healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. Practice Implications - Interventions are needed which address the transitional care needs of parents as well as young people

The meaning of ‘place’ in families’ lived experiences of paediatric outpatient care in different settings:a descriptive phenomenological study

Health service reforms in the United Kingdom have sought to ensure that children and young people who are ill receive timely, high quality and effective care as close to home as possible. Using phenomenological methods, this study examined the experience and impact of introducing new, community-based paediatric outpatient clinics from the perspective of NHS service-users. Findings reveal that paediatric outpatient ‘care closer to home’ is experienced in ways that go beyond concerns about location and proximity. For families it means care that ‘fits into their lives’ spatially, temporally and emotionally; facilitating a sense of ‘at-homeness’ within the self and within the place, through the creation of a warm and welcoming environment, and by providing timely consultations which attend to aspects of the families’ lifeworld

Patterns in participation: Factors influencing parent attendance at two, centre-based early childhood interventions

Interventions training parents of at-risk children have received considerable empirical support but their effectiveness is undermined by low attendance rates. This research sought to clarify why parents, even with the best of intentions, fail to follow through to full participation in workshop programs; and to provide insight into ways to improve parental engagement. We examined participation in Parents as Partners, a school-based, early childhood intervention. Demographic and ongoing educational, social, emotional and behavioural data for 136 parent-child dyads were gathered from parents, teachers and children. Mitigation of a wide range of factors previously identified as barriers to attendance was also attempted. A post-intervention survey was conducted to examine parents’ insights into their attendance patterns. Overall, 91 parents attended and 44 failed to attend any workshops. Higher parent education and SEI, and better child language skills were good predictors of attendance (87%), but poor predictors of nonattendance (42%). Additionally, parent-child dyad profiles suggested that children of nonattending parents were more likely to benefit from workshop content than attenders’ children. Survey data suggested that attenders organised their schedules to facilitate follow-through but nonattenders were unable to do so. Family characteristics and practical reasons were central, interacting factors affecting attendance. Parental self-organisation appeared to moderate follow-through and to stem from lifestyle constraints related to lower SEI and parent education. This produced high nonattendance rates in parents of children who most needed support. It is urgent to discover to what extent innovative delivery platforms currently being explored (e.g., internet/social media) can improve parental engagement

Weight-management in children living with asthma:a qualitative study of the experiences of paediatric healthcare professionals

OBJECTIVE: Weight loss has been found to improve the symptoms of asthma in children who are overweight. However, many paediatric weight management programmes do not address the challenges associated with living with asthma. The aim of this study was to explore the views and experiences of paediatric healthcare professionals concerning weight management advice and support offered to families of children living with asthma. METHODS: In-depth individual interviews with 10 healthcare professionals who work with a paediatric asthma population (n = 4 Respiratory Consultants, 3 Respiratory Nurses, 3 General Paediatricians). Data were analysed using a Framework approach. RESULTS: Healthcare professionals highlighted that families' perceptions of weight, their approach to physical activity and nutrition, the family's social context and perceptions of asthma and asthma treatment all influence weight management in children living with asthma. Initiating weight management conversations and referring to weight management support were perceived as challenging. It was thought that tailoring weight management to the needs of children living with asthma and locating support within the community were important to the success of a family-centred intervention. CONCLUSIONS: The results highlight the added complexity of responding to excessive weight in a paediatric population with asthma. Training and referral guidance for healthcare professionals may help overcome weight management support challenges. Addressing family beliefs about the factors influencing paediatric asthma and exploring families' motivations for behaviour change may enhance engagement with weight management

On doing ‘risk work’ in the context of successful outcomes:exploring how medication safety is brought into action through health professionals’ everyday working practices

Interest in risk has grown exponentially in healthcare, resulting in a plethora of policies and guidelines to manage risk at all levels across the healthcare system. However, the impact of risk on the nature and experiences of healthcare work remains a relatively neglected area of research on risk in healthcare. Building on the concept of ‘risk work’, in this article we examine how medication safety is brought into action through health professionals’ everyday working practices at the point of medication administration. Drawing on two closely related data sets, both generated in a large paediatric hospital providing secondary and tertiary care in England, we argue that medication-related risks are constructed and negotiated through situated social interactions. Frontline practitioners actively reconcile the logics of risk work and good-quality bedside patient care enabling them to get risk work done to successfully meet the formally established standards of quality and safety performance. ‘Risk work’ has the potential to make visible and explicit a range of risk-related practices that may not be acknowledged as such if they do not align with the established meanings of risk and the normative frameworks built around them. A focus on ‘risk work’ can bring in a new lens to the study of risk in healthcare with the potential to generate learning from how risk work gets done in the context of routine clinical practice and successful outcomes, rather than incidents and failures, in healthcare service provision

Putting children forward for epilepsy surgery:a qualitative study of UK parents' and health professionals' decision-making experiences

Background Against a backdrop of recommendations for increasing access to and uptake of early surgical intervention for children with medically intractable epilepsy, it is important to understand how parents and professionals decide to put children forward for epilepsy surgery and what their decisional support needs are. Aim The aim of this study was to explore how parents and health professionals make decisions regarding putting children forward for pediatric epilepsy surgery. Methods Individual interviews were conducted with nine parents of children who had undergone pediatric epilepsy surgery at a specialist children's hospital and ten healthcare professionals who made up the children's epilepsy surgery service multidisciplinary healthcare team (MDT). Three MDT meetings were also observed. Data were analyzed thematically. Findings Four themes were generated from analysis of interviews with parents: presentation of surgery as a treatment option, decision-making, looking back, and interventions. Three themes were generated from analysis of interviews/observations with health professionals: triangulating information, team working, and patient and family perspectives. Discussion Parents wanted more information and support in deciding to put their child forward for epilepsy surgery. They attempted to balance the potential benefits of surgery against any risks of harm. For health professionals, a multidisciplinary approach was seen as crucial to the decision-making process. Advocating for the family was perceived to be the responsibility of nonmedical professionals. Conclusion Decision-making can be supported by incorporating families into discussions regarding epilepsy surgery as a potential treatment option earlier in the process and by providing families with additional information and access to other parents with similar experiences

How do stakeholders experience the adoption of electronic prescribing systems in hospitals? A systematic review and thematic synthesis of qualitative studies

Background: Electronic prescribing (ePrescribing) or computerised provider/physician order entry (CPOE) systems can improve the quality and safety of health services, but the translation of this into reduced harm for patients remains unclear. This review aimed to synthesise primary qualitative research relating to how stakeholders experience the adoption of ePrescribing/CPOE systems in hospitals, to help better understand why and how healthcare organisations have not yet realised the full potential of such systems and to inform future implementations and research. Methods: We systematically searched 10 bibliographic databases and additional sources for citation searching and grey literature, with no restriction on date or publication language. Qualitative studies exploring the perspectives/experiences of stakeholders with the implementation, management, use and/or optimisation of ePrescribing/CPOE systems in hospitals were included. Quality assessment combined criteria from the Critical Appraisal Skills Programme Qualitative Checklist and the Standards for Reporting Qualitative Research guidelines. Data were synthesised thematically. Results: 79 articles were included. Stakeholders’ perspectives reflected a mixed set of positive and negative implications of engaging in ePrescribing/CPOE as part of their work. These were underpinned by further-reaching change processes. Impacts reported were largely practice related rather than at the organisational level. Factors affecting the implementation process and actions undertaken prior to implementation were perceived as important in understanding ePrescribing/CPOE adoption and impact. Conclusions: Implementing organisations and teams should consider the breadth and depth of changes that ePrescribing/CPOE adoption can trigger rather than focus on discrete benefits/problems and favour implementation strategies that: consider the preimplementation context, are responsive to (and transparent about) organisational and stakeholder needs and agendas and which can be sustained effectively over time as implementations develop and gradually transition to routine use and system optimisation

Copper- and zinc-bearing composite membranes for periodontal repair

Periodontitis (inflammation and destruction of the tooth attachment apparatus) is one of the most widespread diseases in the world. Polymer-bioactive glass composite membranes can be used for the guided tissue regeneration (GTR) of diseased periodontal structures. GTR involves the placement of the membrane to exclude soft epithelial and gingival tissues from the exposed tooth in order to facilitate the regeneration of the more slow-growing periodontal ligament and hard tissues. Bioactive glasses incorporating antimicrobial ions such as silver, zinc and copper have been shown to resist biomaterial-centred infection; although, the presence of these metal ions is reported to reduce bioactivity in some instances. Chitosan, a biodegradable carbohydrate polymer, is a popular choice for GTR membranes as its structure resembles that of bone extracellular matrix. In the present study, copper- and/or zinc-bearing bioactive glasses were prepared by the sol-gel process and incorporated into chitosan membranes by solvent-casting. The in vitro bioactivity and degradation rates of the chitosan-bioactive glass membranes were evaluated with respect to their potential use as GTR membranes

Barriers to engagement with testing for Sexually Transmitted Infections within a UK-based young adult Black Caribbean community: A qualitative study

Background:The Black Caribbean population have a disproportionately high burden of SexuallyTransmitted Infections (STIs) compared with other ethnic groups. The aim of this study was to explore barriers to engagement with STI testing within a UK-based young adult Black Caribbean community. Methods:Semi-structured interviews were carried out with 14 young adults from the Black Caribbean community and six sexual health professionals. Data were analysed thematically. A focus group of 5 young adults was conducted to refine themes. Results:Data analysis generated three themes (1) culturally embedded stigma, (2) historically embedded mistrust, (3) lack of knowledge. Perceived as “dirty”, particularly for females, infection with STIs was stigmatised by religious conceptions of “purity” and shame. This presented challenges in terms of cultural acceptability of talking about STI testing with partners, friends, and family. Legacies of colonialism, medical racism and malpractice compromised young people’s trust in medical intervention and confidentiality of data management. A lack of knowledge related to STIs and their treatment, and in how to access and perform STI tests further served as a barrier. Culturally tailored interventions targeting these factors and delivered by radio, podcasts and social media were highlighted as having potential to improve engagement with STI testing.Discussion:Engagement with STI testing by young adults from the Black Caribbean community is impacted by historically and culturally embedded teachings, practices and beliefs inherited through generations. Targeting these factors within culturally tailored interventions may be effective for increasing STI-testing, and thus reducing rates of STI-infection, in this population. <br/