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)

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

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

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

Ingredients and change processes in occupational therapy for children: a grounded theory study

© 2016 Informa UK Limited, trading as Taylor & Francis Group. Background: There is limited evidence about the effectiveness of occupational therapy interventions for participation outcomes in children with coordination difficulties. Developing theory about the interventions, i.e. their ingredients and change processes, is the first step to advance the evidence base. Aim: To develop theory about the key ingredients of occupational therapy interventions for children with coordination difficulties and the processes through which change in participation might happen. Material and methods: Grounded theory methodology, as described by Kathy Charmaz, was used to develop the theory. Children and parents participated in semi-structured interviews to share their experiences of occupational therapy and processes of change. Data collection and analysis were completed concurrently using constant comparison methods. Results: Five key ingredients of interventions were described: performing activities and tasks; achieving; carer support; helping and supporting the child; and labelling. Ingredients related to participation by changing children’s mastery experience, increasing capability beliefs and sense of control. Parents’ knowledge, skills, positive emotions, sense of empowerment and capability beliefs also related to children’s participation. Conclusion and significance: The results identify intervention ingredients and change pathways within occupational therapy to increase participation. It is unclear how explicitly and often therapists consider and make use of these ingredients and pathway

Qualitative accounts of young-people, parents and staff involved with a purpose-designed, pilot short-break service for 18–24 year olds with life-limiting conditions

© 2018 Elsevier Ltd Purpose: Transition to adult health and social-care services is a time of great uncertainty for young adults with life-limiting conditions; due to improved management, many who would have previously died before they were 18 years old are now surviving into early adulthood. Nevertheless, few services exist to meet their specific needs for specialist short breaks away from home. The purpose of this research was to determine the views and perspectives of young adults' parents/carers and staff engaged with a purpose-designed, pilot short-break service for 18–24 year olds with life-limiting conditions. Data were gathered through qualitative individual or focus group interviews involving two young adults, four mothers and fifteen health or social-care staff associated with the service. Data were analysed using Framework Analysis. Principal results: Emergent themes: (i) The need for a specialist short-break service; (ii) Decision making when using or delivering the service; (iii) Challenges of staffing and financing the service (iv) Meeting young adults' complex needs and preferences (v) Suggestions for how to improve the service. The young adults described how they benefitted from access to specialist, age-appropriate, on-site clinical skills facilities and opportunities to socialise with peers. Mothers said they benefitted from time alone or with other family members in the knowledge that the specialist short break service met the needs and preferences of their child as they made the transition to adult services. However, all participating mothers and staff expressed concern about the future well-being of young adults when they left the service at 24 years old. Major conclusions: This study provides new information to inform ongoing development of short-break services for the increasing number of young adults with life-limiting conditions who are surviving longer than they would previously have done. This will help to ensure that UK services are responsive to users' needs and preferences

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