'Being in the same boat': ethnographic insights into an adolescent cancer unit

Cancer may be considered a particularly challenging diagnosis for adolescents. Treatment for adolescents in the United Kingdom may be provided in paediatric or adult settings or, more rarely, in specialist adolescent cancer units. An ethnographic approach was adopted to gather ‘insiders’ views of one such unit using in-depth interviews with patients, parents and professionals, as well as non-participant observation of key events. Two data themes ‘cancer and the cancer unit’ and ‘changes over time’ are discussed in this paper. Benefits of the unit included shared understandings and the manner in which the privations of adolescent cancer were contained and managed by those involved

Adolescent cancer - the need to evaluate current service provision in the UK

This article suggests that service provision for adolescents with cancer requires further attention by health service researchers. Evidence of the care needs of this patient group remains scarce, particularly in terms of evaluations of the available care settings in the UK. The authors discuss the challenges facing the adolescent cancer patient population, and discuss the findings from a recent ethnographic evaluation of one of the first specialist UK units dedicated to the care of adolescents with cancer. The implications for further evaluative research, education and staff-related concerns are explored in the light of the findings

Naturalistic approaches to healthcare evaluation: the case of a teenage cancer unit.

The commitment of the NHS to pursue clinical excellence and to make more overt decisions concerning the funding of services has precipitated a raft of quality initiatives, including the establishment of National Service Frameworks, the National Institute for Clinical Excellence and the Commission for Health Improvement. Integral to the functioning of these bodies is the availability of evidence concerning the effectiveness of treatments/services/strategies. Within this climate, evaluation research takes on an increasingly important role. Traditional evaluations are based on experimental methodologies, but other approaches embedded in the naturalistic/interpretative paradigm have been proposed. These latter approaches purport to capture 'process' rather than just outcome, encompass pluralistic stakeholder viewpoints, and provide in-depth 'rich' descriptions of context. This paper discusses naturalistic evaluations using, as an example, an evaluation of a teenage cancer unit. It concludes that, despite having drawbacks, naturalistic evaluations have a valuable role to play in health service research

A qualitative evaluation of an adolescent cancer unit.

The Expert Advisory Group on Cancer (1995) recommended that cancer centres in the UK should make provision for adolescents with cancer. However, although their number is growing, only a small number of specialist adolescent cancer units currently exist, and teenagers may often be treated in more general settings. To date, no formal evaluation of adolescent cancer units has taken place. This study adopted a qualitative approach to evaluate the first specialist adolescent oncology unit, which was established in the UK 10 years ago. The aim was to provide insight into: the culture of the unit; the experiences of patients and parents on the unit and the staff who worked there; and how the unit was valued by these groups. Semi-structured interviews were conducted with 10 teenagers with cancer, 10 parents and 14 professionals. Systematic non-participant observation of routine activities in the unit was undertaken also. Interview transcripts and observational data were analysed to identify key themes and categories. Six categories emerged from the data: (1) cancer and the cancer unit: although the word cancer had negative connotations, it provided a common supportive bond for adolescents and families on the unit; (2) what it feels like over time: key points in the adolescent cancer experience were emphasized as significant. These included diagnosis, end of treatment and recurrence of cancer; (3) physical structures and facilities: these were focused around the needs of adolescents with cancer and helped to provide a suitable environment of care; (4) the social context: approaches to care were relaxed in nature and suited the needs of adolescents and their families; (5) the family: there was an emphasis on maintaining normal routines whilst managing the impact of cancer on family relationships; and (6) specialism and expertise: the availability of an expert team of professionals with specialized insight into adolescents' needs was pivotal to creating an appropriate environment of care. In conclusion, the complex care and treatment needs of adolescents with cancer may best be met by specialist units

Erectile function preservation and rehabilitation

Despite modified surgical techniques including nerve-sparing procedures radical prostatectomy (RP) is a significant source of long-term erectile function impairment which can be caused by cavernous nerve trauma, insufficient arterial inflow, hypoxia-related and neuropraxia-associated damage to erectile tissue resulting in veno-occlusive dysfunction. An increasing understanding of the pathophysiological mechanisms leading to post-RP erectile dysfunction (ED) has provided concepts for prophylaxis and rehabilitation of erectile function. Penile rehabilitation is the term given to the concept that we can use medications to prevent the structural damage that erectile tissue undergoes after radical pelvic surgery, while nerve recovery occurs. Rehabilitation revolves around two strategies, regular phosphodiesterase type 5 inhibitor (PDE5i) use and early postoperative erectile regeneration. The reason and the logical background to use the PDE5i drug category as prophylaxis for erectile function preservation after RP are not fully understood yet. Supported by experimental and clinical data the postulate is that PDE5i might have a positive effect on endothelial protection, neurogenesis, and cavernosal smooth muscle protection involving neuronal and endothelial regeneration, lowering apoptosis, and recovery of nocturnal erections thus inducing cavernosal oxygenation in an effort to protect the erectile tissue. The current literature also sustains data that an early postoperative erection may optimize the functional rehabilitation by improving cavernosal oxygenation and preventing hypoxia-induced corporal fibrosis. Besides the oral use of PDE5i alternatives are available including transurethral suppositories, vacuum erection devices, and intracavernosal injections complementing the rehabilitation strategies. Based on the current evidence from human and animal studies there is a strong signal for a positive effect of a prophylactic penile rehabilitation after RP which may translate into greater preservation of erectile function. However, a formal analysis of what the optimal rehabilitation program represents, remains unsettled to date. Large prospective multi-center, randomized, placebo-controlled studies in the future will hopefully be able to answer question about an optimal dosing, a time frame for the application, duration and form of the use, and maybe differences between the different medications. Further, supportive managements including cavernous nerve reconstruction and neuroprotection stratagems are under investigation finding their place of value in the future. Comprehensively, for a sufficient erectile rehabilitation after RP it needs a well-informed patient who is highly motivated to follow a medical regimen and is willing to pay for it to maintain sexual quality of life after a potential curative cancer treatment

Positive Behavioural Support in the UK: A State of the Nation Report

Background: Early Positive Approaches to Support (E-PAtS) is a co-produced and co-facilitated group programme that aims to provide early years support to family caregivers of children with Intellectual and Developmental Disabilities. Method: Thirty-five caregivers who had attended E-PAtS groups took part in individual interviews or focus groups. Caregiver experiences concerning attendance of E-PAtS were explored, in relation to process variables and perceived outcomes. Interviews were thematically analysed. Results: Three major themes were identified: Our Group, Evolving Emotions, and Positive Approaches. Being with and being supported by other families was very important to caregivers. Families reported increased confidence and greater realisation of the need for self-care. Children were reported to show fewer behaviours that challenge and increases in adaptive skills. Findings corresponded to mechanisms and outcomes in the E-PAtS logic model. Conclusion: E-PAtS shows promise as one way families and children with Intellectual and Developmental Disabilities can access early years suppor