Alison Rodriguez

The experiences of patients and carers in the daily management of care at the end of life

BACKGROUND Home is the preferred location for most people with an advanced disease and at the end of life. A variety of care professionals work in community settings to provide support to this population. Patients and their spouses, who also care for them (spouse-carers), are rarely accompanied by these sources of support at all times, and have to manage independently between their contact with care professionals. AIM To explore how patients and spouse-carers manage their involvement with care professionals in the community setting. METHOD Interpretive phenomenology informs the design of the research, whereby 16 interviews were conducted with the patients and spouse-carers. Interviews were recorded and transcribed verbatim. Data were analysed using phenomenological techniques including template analysis. FINDINGS Patients and spouse-carers were interdependent and both parties played a role in co-ordinating care and managing relationships with professional care providers. The patients and spouse-carers actively made choices about how to manage their situation, and develop and modify managing strategies based on their experiences. CONCLUSIONS When daily management is effective and care professionals acknowledge the dyadic nature of the patient and spouse-carer relationship, people have confidence in living with advanced disease.

Person-centred phenomenology: service user experiences of exercise

Purpose The purpose of this paper is to explore the lived experience of sport and exercise amongst a group of mental health service users. Participants were recruited from a north of England NHS mental health trust that was piloting a sport and exercise intervention for adults with mental health needs. Design/methodology/approach In depth semi-structured interviews were conducted with five mental health service users. The chosen phenomenological methodology was collaborative and interpretive. Findings Two essential themes were highlighted: “Intermittent health breaking through heavy clouds of illness” and “The cycle of recovery”. In addition, this person-centred research identified a number of intervention benefits beyond those relating to the impact of physical activity on mental health and wellbeing. The main findings are expressed using visual imagery which participants found expressed their perceptions and experiences better than written prose. This includes the way day-to-day illness impacts on the journey of health for people with mental health problems. Research limitations/implications The intervention looked to help the transition between leaving mental health services and developing a regular routine to promote recovery. The study illuminates the voices of service users and identifies that sport and exercise for mental health service users can be beneficial for recovery and feelings of belonging which can strengthen perceptions of the self. Originality/value Few studies have approached this methodological approach. This study demonstrates the value of phenomenological research with a collaborative, person-centred or indeed an involved patient focus. This collaborative approach enabled a shared understanding of the phenomena.

Camping: a tool for relationship maintenance?

Purpose – The purpose of this paper is to investigate individuals’ lived experience of camping, and to explore the effects of camping on relationships. Design/methodology/approach – The research adopted a descriptive phenomenological approach (Langdridge, 2007). Guided interviews were carried out with four participants, recalling their most memorable camping experience, with the aid of photographs to elicit memories. Analysis followed Colaizzis (1978) seven-stage analysis and findings were discussed in relation to Ducks model of relationship dissolution (1981). Findings – Findings concern how camping is a great opportunity for couples, and friends, to re-connect with each other, reinforcing existing bonds and strengthening weakened ones. Other findings included enjoyment of the tranquillity and relaxation the natural environment provided, and for some the sense of adventure was encouraged, and the idea of “being away” from the usual surroundings was reported to be of relational benefit. Originality/valu...

‘It’s not mind blowing really….it’s about keeping people happy’: the perceptions of player welfare managers in Rugby Super League

Abstract At a time when the welfare needs of individuals within powerful organisations, such as professional sport, are being scrutinised it is appropriate to look at what is being done to support athletes and what more may be needed. The RFL, in recognition of the need for welfare support, introduced player welfare managers to all Super League clubs in 2011. Using an interpretivist approach, we report the findings from a series of semi-structured interviews with player welfare managers (PWMs) that explored the PWMs’ perceptions of player welfare, what impact they believe they are having on player welfare, and what else is needed to enhance the service. The PWMs perceive that they have been an important resource for players, independent of the club and coaches, which has allowed players to seek support for a range of issues. The use of the services provided by PWMs increased over the time between interviews, this, it is thought, is due in part to a change of culture within the sport. The PWMs felt the head coach, along with the backing of the club, and the RFL structure were important in the services being accessible and accepted. The PWMs were struggling to meet the demands of their job roles, which were largely part time. However, since the results of this and other studies were made accessible to the RFL, large-scale changes to welfare provision have been made, including making the PWMs’ posts full-time. This is seen as an important contribution and commitment to players’ welfare needs.

Dignity therapy interventions for young people in palliative care: a rapid structured evidence review

BACKGROUND Dignity therapy is becoming established in adult settings, with research supporting its effectiveness. AIMS This article aims to summarise and synthesise the research that has explored dignity therapy and related meaning-making interventions in palliative care with young people. METHODS A rapid structured review was undertaken. Quality appraisal was based on the randomised control trial or cohort study Critical Appraisals Skills Programme (CASP) tool. RESULTS Four studies met the inclusion criteria; one focused on young people (7-17 years), the other three included young people but mean ages were 50-70 years. Dignity therapy was found to improve aspects of wellbeing for the patient and was perceived as helpful for the family. CONCLUSIONS Dignity therapy is well received, with improvements in measures of wellbeing. However, few studies have included young people (24 years and below). This highlights a clear gap in the literature, suggesting the need to develop and evaluate a dignity therapy or related meaning-making intervention to support young people.

Mobilising identity through social media: psychosocial support for young people with life-limiting conditions

EBN engages readers through a range of Online social media activities to debate issues important to nurses and nursing. EBN Opinion papers highlight and expand on these debates.

Professionals need to discuss more effectively the holistic needs of their patients regarding palliative care

Commentary on: Collins A, McLachlan, SA, Philip, J. Communication about palliative care: A phenomenological study exploring patient views and responses to its discussion. Palliative Medicine 32: 133–42.

Back to basics: can unstructured camping promote wellbeing?

Purpose The purpose of this paper is to explore the perceived wellbeing benefits of the unstructured camping experience for young adults. Design/methodology/approach This is a cross-sectional descriptive phenomenological study. Young adults between the ages of 21 and 30 years with recent experiences of camping were invited to participate in the study. A descriptive phenomenological approach was taken, involving photograph-guided semi-structured interviews and Colaizzi’s seven-stage analysis framework. Ethical approval was granted by the university where the study was managed. Findings Four female participants were interviewed; each interview lasted approximately 60 minutes in duration. Unstructured camping holidays were perceived to heighten general perceptions of health and wellbeing. Five themes emerged: “Getting away”, “Appreciation of the Natural Environment”, “Relationship Maintenance”, “Tranquility and Relaxation” and “Freedom and Adventure/Exploration”. The unstructured nature of the activity encouraged participant’s freewill to appreciate the natural environment and to engage in physical activity. Escape from everyday stressors to a tranquil environment provided the space and time to think and talk, relax and be active. Originality/value Green care initiatives could use the unstructured camping experience, or what the authors have framed as the “back to basics” model of camping, as a tool to promote general health and wellbeing in clinical and non-clinical young adult populations. Further research is needed to substantiate the evidence base, especially to probe further around the benefits of the spontaneity of the “back to basics” camping experience, in contrast to the structured group camp experiences the authors advocate in the UK and overseas for children’s leisure or health purposes.

There will be times when nurses can respond

The spiritual or existential side of palliative care is recognised as one of the most important and least understood aspects ( Baird 2016 ) of this type of care. It is also regarded as one of the most difficult areas to communicate about ( Hexem et al 2011 ).