'A Breath of Fresh Air': The experiences of undergraduate nursing students' participating in a creative learning project:This paper presents the experiences of undergraduate nursing students who participated in a creative learning project to explore the cells, tissues and organs of the human body through felt making.

Aim of the study
This paper presents the experiences of undergraduate nursing students who participated in a creative learning project to explore the cells, tissues and organs of the human body through felt making.

Context and Background
This project was funded by a Teaching Innovation Award from the School of Nursing and Midwifery, Queen’s University Belfast to explore creative ways of engaging year one undergraduate nursing students in learning anatomy and physiology. The project was facilitated through collaboration between University Teaching staff and Arts Care, a unique arts and health charity in Northern Ireland.

Methodology
Twelve year one students participated in four workshops designed to explore the cells, tissues and organs of the human body through the medium of felt. Facilitated by an Arts Care artist, students translated their learning into striking felt images. The project culminated in the exhibition of this unique collection of work which has been viewed by fellow students, teaching staff, nurses from practice, and artists from Arts Care, friends, family and members of the public.

Key Findings and conclusions
The opportunity to learn in a more diverse way within a safe and non-judgmental environment was valued, with students’ reporting a greater confidence in life science knowledge. Self- reflection and group discussion revealed that the project was a unique creative learning experience for all involved – students, teaching staff and artist – resulting in individual and collective benefits far beyond knowledge acquisition. As individuals we each felt respected and recognised for our unique contribution to the project. Working in partnership with Arts Care enabled us to experience the benefits of creativity to well-being and reflect upon how engagement in creative activities can help healthcare professionals to focus on the individual patient’s needs and how this is fundamental to enhancing patient-centred care

Prescribing for children and adolescents in mental health

The level of psychiatric prescribing in children and adolescents is increasing; however, rates of adherence in this group of patients range from only 34–54%. The possible consequences of untreated psychiatric problems include longer duration of the illness, increased severity of symptoms, higher relapse rates, greater risk of suicidal behaviour, academic difficulties and increased family conflict. Prescribers are often faced with difficulty if the parent or carer is not in agreement with the use of medication. This parental disagreement has implications for medication concordance and the relationship between clinicians, young people and their families. For prescribers, understanding parental and young people's attitudes towards medication and their experiences of mental health services is central to patient-centred care.

Late effects of cancer and cancer treatment-the perspective of the patient

PURPOSE: Understanding the experience of late effects from the perspective of cancer survivors is essential to inform patient-centred care. This study investigated the nature and onset of late effects experienced by survivors and the manner in which late effects have affected their lives.

METHODS: Sixteen purposively selected cancer survivors participated in a qualitative interview study. The data were analysed inductively using a narrative schema in order to derive the main themes that characterised patients' accounts of late effects.

RESULTS: Individual survivors tended to experience more than one late effect spanning a range of physical and psychological effects. Late effects impacted on relationships, working life, finances and the ability to undertake daily activities. Survivors reported experiencing psychological late effects from around the end of treatment whereas the onset of physical effects occurred later during the post-treatment period. Late effects were managed using formal health services, informal social support and use of 'wellbeing strategies'. Survivors engaged in a process of searching for reasons for experiencing late effects and struggled to make sense of their situation. In particular, a process of 'peer-patient comparison' was used by survivors to help them make sense of, or cope with, their late effects. There appeared to be an association between personal disposition and adaptation and adjustment to the impact of late effects.

CONCLUSIONS: Cancer survivors identified potential components for supported self-management or intervention programmes, as well as important considerations in terms of peer comparisons, personal disposition and making sense of experienced late effects.

Conciliação família-trabalho em famílias monoparentais:uma abordagem comparativa de género

Tese de doutoramento, Ciências Sociais (Sociologia Geral), Universidade de Lisboa, Instituto de Ciências Sociais, 2013

Carers and Co-Production: Enabling Expertise through Experience?

Purpose To provide a brief overview of the literature to date which has focussed on co-production within mental healthcare in the UK, including service user and carer involvement and collaboration. Design The paper presents key outcomes from studies which have explicitly attempted to introduce co-produced care in addition to specific tools designed to encourage co-production within mental health services. The paper debates the cultural and ideological shift required for staff, service users and family members to undertake co-produced care and outlines challenges ahead with respect to service redesign and new roles in practice. Findings Informal carers (family and friends) are recognised as a fundamental resource for mental health service provision, as well as a rich source of expertise through experience, yet their views are rarely solicited by mental health professionals or taken into account during decision-making. This issue is considered alongside new policy recommendations which advocate the development of co-produced services and care. Research Limitations Despite the launch of a number of initiatives designed to build on peer experience and support, there has been a lack of attention on the differing dynamic which remains evident between healthcare professionals and people using mental health services. Co-production sheds a light on the blurring of roles, trust and shared endeavour (Slay and Stephens, 2013) but, despite an increase in peer recovery workers across England, there has been little research or service development designed to focus explicitly on this particular dynamic. Practical Implications Despite these challenges, coproduction in mental healthcare represents a real opportunity for the skills and experience of family members to be taken into account and could provide a mechanism to achieve the ‘triangle of care’ with input, recognition and respect given to all (service users, carers, professionals) whose lives are touched by mental distress. However, lack of attention in relation to carer perspectives, expertise and potential involvement could undermine the potential for coproduction to act as a vehicle to encourage person-centred care which accounts for social in addition to clinical factors. Social Implications The families of people with severe and enduring mental illness (SMI) assume a major responsibility for the provision of care and support to their relatives over extended time periods (Rose et al, 2004). Involving carers in discussions about care planning could help to provide a wider picture about the impact of mental health difficulties, beyond symptom reduction. The ‘co-production of care’ reflects a desire to work meaningfully and fully with service users and carers. However, to date, little work has been undertaken in order to coproduce services through the ‘triangle of care’ with carers bringing their own skills, resources and expertise. Originality/Value This paper debates the current involvement of carers across mental healthcare and debates whether co-production could be a vehicle to utilise carer expertise, enhance quality and satisfaction with mental healthcare. The critique of current work highlights the danger of increasing expectations on service providers to undertake work aligned to key initiatives (shared decision-making, person-centred care, co-production), that have common underpinning principles but, in the absence of practical guidance, could be addressed in isolation rather than as an integrated approach within a ‘triangle of care’.

Understanding the Needs of People with Dementia and Family Carers

This is the first in a short series that presents case study examples of the positive work achieved by trusts who participated in the Royal College of Nursing's development programme to improve dementia care in acute hospitals. When a person with dementia is in hospital, poor understanding of individual needs and preferences can contribute to a lack of person-centred care. Similarly, the needs of family carers can often be overlooked and staff do not always appreciate these needs at such a stressful time. This article illustrates how three NHS trusts have addressed these issues. To help staff get to know patients with dementia, Salford Royal NHS Foundation Trust has implemented a patient passport. Similarly, The Shrewsbury and Telford Hospital NHS Trust has implemented a carer passport that overcomes the restrictions imposed by hospital visiting hours. Royal Devon and Exeter NHS Foundation Trust also focused on carers, holding a workshop to elicit feedback on what was important to them. This was a useful means of engaging with carers and helped staff to realise that even simple changes can have a significant effect.

Examining the Influence of the Patient Declaration of Values on Hospital Policies and Practices

The purpose of this study was to explore how a leading Ontario hospital operationalizes their Patient Declaration of Values (PDoV) in policy and in practice. This was a single case study, which took place in a leading patient-centred Ontario hospital. The study included 18 individual interviews with employees and patient experience advisors, as well as, document analysis of strategic planning reports (n=10). Five themes emerged: (1) setting the stage, (2) inspiring change, (3) organizational structures, (4) organizational and environmental barriers, and (5) reflection and improvement. This study has highlighted the role of the PDoV within a leading Ontario hospital. It lends itself to providing a process with core strategies for creating change in an acute health care organization; to embed a culture of patient and family centred care.

The perceptions of commune health workers about an education strategy received for counselling fathers about infant and breastfeeding involvement

Objective To evaluate the perceptions of healthcare workers in Vietnam about the efficacy of a continuing education strategy about father involvement and breastfeeding counselling. Design One group, post-test only, quasi-experimental design Method A questionnaire based on Social Cognitive Theory (SCT; Bandura, 2004) was disseminated to participants (N=28). This questionnaire measured self-efficacy, outcome expectations, socio-structural factors, goal setting and behaviour. Multiple regressions were analyzed predicting participants’ practice of client focused father involvement consulting. Results Bivariate correlations demonstrated the anticipated patterns of association between SCT-based constructs. Multiple regression analysis indicated that outcome expectations and barriers were significant predictors of client focused father involvement consulting. Conclusions Participants reported that the education increased their self-efficacy, outcome expectations and client focused father involvement consulting behaviour. Future education should be accessible, increase counselling confidence and address beliefs about the outcomes and challenges of father involvement consulting.

Coconstruction des composantes d'un programme d'intervention en soutien à la résilience de familles dont un adolescent est atteint d'un traumatisme craniocérébral

La vie de famille avec un adolescent comporte son lot de défis. Les émotions de l’adolescent qui se présentent parfois comme des montagnes russes peuvent rendre les relations tendues et difficiles au sein de la cellule familiale, voire même au-delà de celle-ci. Par son caractère inattendu, l’avènement d’un traumatisme craniocérébral (TCC) chez l’adolescent vient fragiliser encore davantage la dynamique familiale. En outre, la myriade d’impacts engendrés par le TCC contraint la famille à modifier son projet de vie en s’investissant ensemble pour le reconstruire. La résilience devant une situation de traumatisme ne se manifeste pas de la même façon pour toutes les familles qui y sont confrontées. Certaines d’entre elles réussissent à se transformer positivement, tandis que d’autres n’y parviennent pas ou manifestent plus de difficultés. Il convient alors d’actualiser des approches de soins interdisciplinaires centrées sur la famille qui favoriseraient la reconnaissance des éléments pouvant soutenir son processus de résilience à travers cette épreuve et, enfin, aider à transformer son projet de vie. Avec comme perspective disciplinaire le modèle humaniste des soins infirmiers (Cara, 2012; Cara & Girard, 2013; Girard & Cara, 2011), cette étude qualitative et inductive (LoBiondo-Wood, Haber, Cameron, & Singh, 2009), soutenue par une approche collaborative de recherche (Desgagné, 1997), a permis la coconstruction des composantes d’un programme d’intervention en soutien à la résilience familiale, avec des familles dont un adolescent est atteint d’un TCC modéré ou sévère et des professionnels de la réadaptation. Le modèle de développement et de validation d’interventions complexes (Van Meijel, Gamel, Van Swieten-Duijfjes, & Grypdonck, 2004) a structuré la collecte des données en trois volets. Le premier volet consistait à identifier les composantes du programme d’intervention selon les familles (n=6) et les professionnels de la réadaptation (n=5). La priorisation et la validation des composantes du programme d’intervention, soit respectivement le deuxième et troisième volets, se sont réalisées auprès de ces mêmes familles (n=6 au volet 2 et n=4 au volet 3) et professionnels de la réadaptation (n=5 aux volets 2 et 3). Le processus d’analyse des données (Miles & Huberman, 2003) a repéré cinq thèmes intégrateurs, considérés comme les composantes du programme d’intervention en soutien à la résilience familiale à la suite du TCC modéré ou sévère d’un adolescent. Ce sont : 1) les caractéristiques de la famille et ses influences; 2) les stratégies familiales positives; 3) le soutien familial et social; 4) la prise en charge de l’aspect occupationnel et; 5) l’apport de la communauté et des professionnels de la santé. Les résultats issus de ce processus de coconstruction ont produit une matrice solide, suffisamment flexible pour pouvoir s’adapter aux différents contextes dans lesquels évoluent les familles et les professionnels de la réadaptation. Cette étude offre en outre des avenues intéressantes tant pour les praticiens que pour les gestionnaires et les chercheurs en sciences infirmières et dans d’autres disciplines quant à la mise en place de stratégies concrètes visant à soutenir le processus de résilience des familles dans des situations particulièrement difficiles de leur vie.

La description de la pratique interprofessionnelle centrée sur le patient au cours de la trajectoire de soins en oncologie

Les orientations ministérielles du Québec encouragent une pratique interprofessionnelle centrée sur le patient (ICP), au cours de la trajectoire de soins, pour soutenir les patients diagnostiqués d’un cancer. Cette pratique assure une meilleure communication entre les professionnels et la sécurité des patients, et améliore les soins et l'accès aux services (Santé Canada, 2010). Cependant, les études rapportent généralement les perceptions des professionnels en regard des soins et des services et informent sur les facteurs organisationnels, procéduraux et relationnels liés à cette pratique. Considérant l’importance de celle-ci, il semble nécessaire de la documenter selon les perceptions de patients, de proches et de professionnels dans un contexte réel de soins. L’étude avait pour but de décrire la pratique ICP au cours de la trajectoire de soins en oncologie. Pour soutenir cette description, l’adaptation du cadre de référence Person centred nursing framework (PCNF) de McCormack et McCance (2010) a été réalisée en incluant l’interprofessionnalité, telle que définie par Couturier (2009) et utilisée. Une étude qualitative de cas multiples a été réalisée auprès de deux équipes interprofessionnelles d’un centre hospitalier universitaire de la région de Montréal. L’échantillon (N=31) était composé de 8 patients, 3 proches, 18 professionnels et 2 gestionnaires. Vingt-huit entrevues ont été réalisées ainsi que 57,6 heures d’observation d’activités cliniques auxquelles participait le patient (ex., rendez-vous, traitement). Les résultats suggèrent que la pratique ICP des équipes est empreinte d’un dualisme de cultures (culture centrée sur le traitement versus culture davantage centrée sur le patient). De plus, les équipes étudiées ont présenté une pratique ICP fluctuante en raison de l’influence de nombreux facteurs tels le « fonctionnement de l’équipe », l’« environnement physique » et le « positionnement » des patients et des professionnels. Les résultats ont aussi suggéré que le déploiement des équipes de soins se fait à intensité variable au cours de la trajectoire. Il a été soulevé que les patients ont pu faire l’expérience d’une pratique ICP changeante, de bris dans la continuité des soins et de transition difficile entre les différentes périodes de la trajectoire. De plus, la description d’une pratique ICP souhaitée par les patients, leurs proches et les professionnels propose un accompagnement respectant le rythme du patient, sans prédominance des valeurs du professionnel ainsi qu’une assiduité dans la collaboration des membres de l’équipe. Cette étude suggère que les sciences infirmières peuvent ajouter aux connaissances interprofessionnelles actuelles en utilisant une perspective centrée sur le patient, perspective cohérente avec ses valeurs disciplinaires. De plus, de nombreuses pistes de réflexion sont proposées pour la pratique, la recherche, la gestion et la formation.

What’s Unethical About Interprofessional Collaboration?

Commentaire / Commentary

La familia del paciente en Unidad de Cuidado Intensivo (UCI)

Introducción: Ingresar a la UCI no es una experiencia exclusiva del paciente; implica e involucra directamente a la familia, en aspectos generadores de estrés, estrategias de afrontamiento, temores, actitudes y expectativas, la participación de la familia en el cuidado y el rol del psicólogo. Objetivo: Revisar de los antecedentes teóricos y empíricos sobre la experiencia de la familia en UCI. Metodología: Se revisaron 62 artículos indexados en bases de datos. Resultados: la UCI es algo desconocido tanto para el paciente como para la familia, por esto este entorno acentúa la aparición de síntomas ansiosos, depresivos y en algunos casos estrés post traumático. La muerte es uno de los principales temores que debe enfrentar la familia. Con el propósito de ajustarse a las demandas de la UCI, los familiares exhiben estrategias de afrontamiento enfocadas principalmente en la comunicación, el soporte espiritual y religioso y la toma de decisiones. El cuidado centrado en la familia permite una mejor comunicación, relación con el paciente y personal médico. El papel del psicólogo es poco explorado en el espacio de la UCI, pero este puede promover estrategias de prevención y de rehabilitación en el paciente y su grupo familiar. Discusión: es importante tener en cuenta que la muerte en UCI es una posibilidad, algunos síntomas como ansiedad, depresión pueden aparecer y mantenerse en el tiempo, centrar el cuidado en la familia permite tomar las decisiones basados en el diagnóstico y pronóstico y promueve expectativas realistas. Conclusiones: temores, expectativas, actitudes, estrategias de afrontamiento, factores generadores de estrés permiten explicar y comprender la experiencia de la familia del paciente en UCI.

A multicentre randomized controlled trial of an empowerment-inspired intervention for adolescents starting continuous subcutaneous insulin infusion : a study protocol

Background. Continuous subcutaneous insulin infusion (CSII) treatment among children with type 1 diabetes is increasing in Sweden. However, studies evaluating glycaemic control in children using CSII show inconsistent results. Omitting bolus insulin doses using CSII may cause reduced glycaemic control among adolescents. The distribution of responsibility for diabetes self-management between children and parents is often unclear and needs clarification. There is much published support for continued parental involvement and shared diabetes management during adolescence. Guided Self-Determination (GSD) is an empowerment-based, person-centred, reflection and problem solving method intended to guide the patient to become self-sufficient and develop life skills for managing difficulties in diabetes self-management. This method has been adapted for adolescents and parents as Guided Self-Determination-Young (GSD-Y). This study aims to evaluate the effect of an intervention with GSD-Y in groups of adolescents starting on insulin pumps and their parents on diabetes-related family conflicts, perceived health and quality of life (QoL), and metabolic control. Here, we describe the protocol and plans for study enrolment. Methods. This study is designed as a randomized, controlled, prospective, multicentre study. Eighty patients between 12-18 years of age who are planning to start CSII will be included. All adolescents and their parents will receive standard insulin pump training. The education intervention will be conducted when CSII is to be started and at four appointments in the first 4 months after starting CSII. The primary outcome is haemoglobin A1c levels. Secondary outcomes are perceived health and QoL, frequency of blood glucose self-monitoring and bolus doses, and usage of carbohydrate counting. The following instruments will be used to evaluate perceived health and QoL: Disabkids, 'Check your health', the Diabetes Family Conflict Scale and the Swedish Diabetes Empowerment Scale. Outcomes will be evaluated within and between groups by comparing data at baseline, and at 6 and 12 months after starting treatment. Results and discussion. In this study, we will assess the effect of starting an insulin pump together with the model of Guided Self-Determination to determine whether this approach leads to retention of improved glycaemic control, QoL, responsibility distribution and reduced diabetes-related conflicts in the family. Trial registration: Current controlled trials: ISRCTN22444034

Från ord till handling : En kvalitativ studie om värdegrund och socialt innehåll för äldre på särskilt boende

Socialstyrelsens brukarundersökning visar att äldre som bor på särskilt boende är mest missnöjda med de aktiviteter och den sociala samvaron som verksamheten erbjuder. Äldreomsorgen bygger på den nationella värdegrunden som innefattar att den äldre ska få leva ett värdigt liv och känna välbefinnande, men det är inte klart hur denna värdegrund påverkar personalens arbetssätt eller de sociala aktiviteter som erbjuds. Vår studie angriper denna fråga. Fem särskilda boenden var representerade både från kommunala och privata vårdgivare i två olika kommuner. Semistrukturerade intervjuer genomfördes med de särskilda boendes enhetschefer, som sedan transkriberades och tematiskt analyserades. Vårt resultat tyder på att den nationella värdegrunden inom äldreomsorgen tolkas olika på alla de särskilda boendena. Alla enhetschefer la stor vikt på personcentrerad vård, men trots det så erbjöd man liknade sociala aktiviteter ofta då som gruppaktivitet. Resultaten diskuterar vi med hänvisning till Aktivitetsteorin och Gerotranscendenceteorin.

Integrating a sense of coherence into the neonatal environment

Background: Family centred care (FCC) is currently a valued philosophy within neonatal care; an approach that places the parents at the heart of all decision-making and engagement in the care of their infant. However, to date, there is a lack of clarity regarding the definition of FCC and limited evidence of FCCs effectiveness in relation to parental, infant or staff outcomes. Discussion: In this paper we present a new perspective to neonatal care based on Aaron Antonovksy's Sense of Coherence (SOC) theory of well-being and positive health. Whilst the SOC was originally conceptualised as a psychological-based construct, the SOCs three underpinning concepts of comprehensibility, manageability and meaningfulness provide a theoretical lens through which to consider and reflect upon meaningful care provision in this particular care environment. By drawing on available FCC research, we consider how the SOC concepts considered from both a parental and professional perspective need to be addressed. The debate offered in this paper is not presented to reduce the importance or significance of FCC within neonatal care, but, rather, how consideration of the SOC offers the basis through which meaningful and effective FCC may be delivered. Practice based implications contextualised within the SOC constructs are also detailed. Summary: Consideration of the SOC constructs from both a parental and professional perspective need to be addressed in FCC provision. Service delivery and care practices need to be comprehensible, meaningful and manageable in order to achieve and promote positive well-being and health for all concerned.