Jane Robertson

Exploring the feasibility and acceptability of couple-based psychosexual support following prostate cancer surgery: study protocol for a pilot randomised controlled trial

BackgroundMen who undergo surgery for prostate cancer frequently experience significant side-effects including urinary and sexual dysfunction. These difficulties can lead to anxiety, depression and reduced quality of life. Many partners also experience psychological distress. An additional impact can be on the couple relationship, with changes to intimacy, and unmet psychosexual supportive needs in relation to sexual recovery and rehabilitation. The aim of this exploratory randomised controlled trial pilot study is to determine the feasibility and acceptability of a novel family-relational-psychosexual intervention to support intimacy and reduce distress among couples following prostate cancer surgery and to estimate the efficacy of this intervention.Methods/DesignThe intervention will comprise six sessions of psychosexual and relationship support delivered by experienced couple-support practitioners. Specialist training in delivering the intervention will be provided to practitioners and they will be guided by a detailed treatment manual based on systemic principles. Sixty-eight couples will be randomised to receive either the intervention or standard care (comprising usual follow-up hospital appointments). A pre-test, post-test design will be used to test the feasibility of the intervention (baseline, end of intervention and six-month follow-up) and its acceptability to couples and healthcare professionals (qualitative interviews). Both individual and relational outcome measures will assess sexual functioning, anxiety and depression, couple relationship, use of health services and erectile dysfunction medication/technologies. An economic analysis will estimate population costs of the intervention, compared to usual care, using simple modelling to evaluate the affordability of the intervention.DiscussionGiven the increasing incidence and survival of post-operative men with prostate cancer, it is timely and appropriate to determine the feasibility of a definitive trial through a pilot randomised controlled trial of a family-relational-psychosexual intervention for couples. The study will provide evidence about the components of a couple-based intervention, its acceptability to patients and healthcare professionals, and its influence on sexual and relational functioning. Data from this study will be used to calculate sample sizes required for any definitive trial.Trial registrationClinicalTrials.gov Identifier: NCT01842438.Registration date: 24 April 2013; Randomisation of first patient: 13 May 2013

Finding meaning in everyday life with dementia: A case study

This paper presents a case study exploring an older woman’s perspective on the quality of her life with dementia. The case study establishes the importance of coherence across the life course in understanding how she evaluates her changed situation in the present compared to the past. The metaphoric description of moving from ‘up there’ to ‘down here’ represents the perceived struggle to maintain a sense of worth despite a marginalised social position. Being able to define self and social identity in ways that preserve a sense of social status is important to find meaning in everyday life. Finding meaning involves looking backwards to sustain continuity with the past and looking forwards to maintain momentum and keep going. A narrative framework is valuable in showing that quality of life is a dimension of meaning associated with maintaining a sense of social worth.

Couple-Based Psychosexual Support Following Prostate Cancer Surgery: Results of a Feasibility Pilot Randomized Control Trial.

INTRODUCTION Surgery for prostate cancer can result in distressing side effects such as sexual difficulties, which are associated with lower levels of dyadic functioning. The study developed and tested an intervention to address sexual, relational, and emotional aspects of the relationship after prostate cancer by incorporating elements of family systems theory and sex therapy. AIMS To develop and test the feasibility and acceptability of relational psychosexual treatment for couples with prostate cancer, determine whether a relational-psychosexual intervention is feasible and acceptable for couples affected by prostate cancer, and determine the parameters for a full-scale trial. METHODS Forty-three couples were recruited for this pilot randomized controlled trial and received a six-session manual-based psychosexual intervention or usual care. Outcomes were measured before, after, and 6 months after the intervention. Acceptability and feasibility were established from recruitment and retention rates and adherence to the manual. MAIN OUTCOME MEASURES The primary outcome measurement was the sexual bother subdomain of the Expanded Prostate Cancer Index Composite. The Hospital Anxiety and Depression Scale and the 15-item Systemic Clinical Outcome and Routine Evaluation (SCORE-15) were used to measure emotional and relational functioning, respectively. RESULTS The intervention was feasible and acceptable. The trial achieved adequate recruitment (38%) and retention (74%) rates. The intervention had a clinically and statistically significant effect on sexual bother immediately after the intervention. Small decreases in anxiety and depression were observed for the intervention couples, although these were not statistically significant. Practitioners reported high levels of adherence to the manual. CONCLUSION The clinically significant impact on sexual bother and positive feedback on the studys feasibility and acceptability indicate that the intervention should be tested in a multicenter trial. The SCORE-15 lacked specificity for this intervention, and future trials would benefit from a couple-focused measurement.

Couple therapy following prostate cancer surgery: a manual to guide treatment: Treatment manual for prostate cancer

Prostate cancer is the third most common cancer in the UK. Ten-year survival is high; consequently a service priority is addressing survivorship issues to support men living with the longer-term consequences of the disease and its treatments. This paper presents a treatment manual which has been tested with couples following prostate cancer surgery to decrease distress in sexual functioning, and improve relational functioning. The content of the manual is described alongside a fictionalized case vignette that illustrates the content and process of sessions. The paper presents the RIPSToP Model (RelatIonal PSychosexual Treatment for couples with Prostate cancer). The manual was developed and piloted in a mixed-method feasibility and acceptability randomized pilot control trial. Qualitative interviews with clinicians delivering the intervention indicate that the manual was acceptable. Practitioner points A systemic manual for supporting couples after prostate cancer surgery has been developed The manual presents a new model, derived from the literature, focusing on family context and the couple dynamic The model impacts psychological wellbeing, relationship functioning and distress related to sexual functioning Practitioners reported positive views of the manual and adhered to its content and structure

Understanding and Measuring the Wellbeing of Carers of People with Dementia (Forthcoming/Available Online)

Abstract Background and Objectives To determine how the wellbeing of carers of people with dementia is understood and measured in contemporary health research. Research Design and Methods A systematic review of reviews was designed, registered with PROSPERO, and then conducted. This focused on systematic reviews of research literature published from 2010 onwards; with the wellbeing of carers of people with dementia being a primary focus. N = 19 studies met the inclusion criteria. Quality appraisal was conducted using the AMSTAR tool (2015). A narrative synthesis was conducted to explore how wellbeing is currently being understood and measured. Results Contemporary health research most frequently conceptualizes wellbeing in the context of a loss–deficit model. Current healthcare research has not kept pace with wider discussions surrounding wellbeing which have become both more complex and more sophisticated. Relying on the loss–deficit model limits current research in understanding and measuring the lived experience of carers of people with dementia. There remains need for a clear and consistent measurement of wellbeing. Discussion and Implications Without clear consensus, health professionals must be careful when using the term “wellbeing”. To help inform healthcare policy and practice, we offer a starting point for a richer concept of wellbeing in the context of dementia that is multi-faceted to include positive dimensions of caregiving in addition to recognized aspects of burden. Standardized and robust measurements are needed to enhance research and there may be benefit from developing a more mixed, blended approach to measurement.

Scaffolding and working together: a qualitative exploration of strategies for everyday life with dementia

Background living with dementia has been described as a process of continual change and adjustment, with people with dementia and their families adopting informal strategies to help manage everyday life. As dementia progresses, families increasingly rely on help from the wider community and formal support. Methods this article reports on a secondary analysis of qualitative data from focus groups and individual interviews with people with dementia and their carers in the North of England. In total, 65 people with dementia and 82 carers took part in the research: 26 in interviews and 121 in focus groups. Focus group and interview audio recordings were transcribed verbatim. A qualitative, inductive, thematic approach was taken for data analysis. Findings the article applies the metaphor of scaffolding to deepen understanding of the strategies used by families. Processes of scaffolding were evident across the data where families, communities, professionals and services worked together to support everyday life for people with dementia. Within this broad theme of scaffolding were three sub-themes characterising the experiences of families living with dementia: doing things together; evolving strategies; and fragility and fear of the future. Conclusions families with dementia are resourceful but do need increasing support (scaffolding) to continue to live as well as possible as dementia progresses. More integrated, proactive work is required from services that recognises existing scaffolds and provides appropriate support before informal strategies become unsustainable; thus enabling people with dementia to live well for longer.

Day care for people with dementia: A qualitative study comparing experiences from Norway and Scotland

Potential benefits from day care attendance are reported in the literature for both people with dementia and caregivers, although the evidence-base is limited. The study aimed to explore and compare experiences of day care services for people with dementia as described by day care attendees and their caregivers in Norway and Scotland. Whereas day care receives prominence in Norway’s national dementia plan, Scotland does not highlight day care in its national dementia strategy. A qualitative cross-national comparative study was undertaken. Semi-structured interviews were conducted with 17 people with dementia and 17 caregivers in Norway, and 19 people with dementia and 15 caregivers in Scotland. Data were analyzed thematically and comparatively to explore the experiences and outcomes of the participants. Findings indicate positive outcomes from day care for both people with dementia and caregivers. Satisfaction with services related to meaningful activities, getting out of the home, strengthening social connections and careful staff facilitation to create a positive and welcoming atmosphere. There were strong similarities in the content of services and experiences reported in the two countries. Some minor differences were noted, with caregiver support being an area of notable divergence in experiences. Specialist day care for people with dementia seems to provide important support and positive outcomes for people with dementia, and respite and reassurance for their caregivers. More research is needed to further explore the effect of day care designed for people with dementia both on the attendees and their caregivers.

Using carer biographical narratives to explore factors involved in proxy reporting of quality of life in people with dementia

Objectives: Quality of life is an important focus of research on dementia, with interest in direct reports of people with dementia and proxy reports of their carers. By exploring the subjective perspectives of unpaid family carers and paid care workers, this study aims to understand how carers construct meaning in narratives about quality of life with dementia. Method: A case-centred approach involved biographical narrative interviews with 10 carers to explore what was important for people with dementia to have a good quality of life. Detailed narrative analysis attended to the linguistic and structural features of accounts to consider how dementia is conceptualised by carers in the framing of quality of life. Results: An individuals perception of how dementia impacts on awareness and behaviour was central to their understanding of quality of life. Carers who constructed dementia as a loss of skills and abilities were able to represent quality of life in positive terms despite the challenges of dementia. Carers who constructed dementia as eroding identity represented quality of life less positively and centred on their own means of coping with a challenging care situation. Conclusion: Findings highlight the importance of helping carers develop positive constructions of quality of life that are associated with understanding dementia as a loss of skills and abilities, rather than as a loss of self. Engaging with subjectivity in carers’ biographical narrative accounts is important in the development of quality of life assessment to understand the meanings and emotions that underlie proxy perspectives.

Response to Editorial Comment “There's a Long Way to Go, But Now We Have a Map”

The study’s intent and, hence, outcomes were psychosocial rather than physical. Our decision to focus on relational processes and outcomes, rather than penile rehabilitation, stemmed from an aspiration to address documented unaddressed negative relational sequelae after prostatectomy. Couples were grateful for the opportunity to address the relational rather than purely physical impact of cancer. Although numerous factors can contribute to improvements in sexual bother, our findings make preliminary suggestions that there is a causal relation between RiPSToP and decreases in sexual bother. Further large-scale trials are needed to see whether this causation can be replicated in a larger sample.

Couple therapy following prostate cancer surgery: a manual to guide treatment

Prostate cancer is the third most common cancer in the UK. Ten-year survival is high; consequently a service priority is addressing survivorship issues to support men living with the longer-term consequences of the disease and its treatments. This paper presents a treatment manual which has been tested with couples following prostate cancer surgery to decrease distress in sexual functioning, and improve relational functioning. The content of the manual is described alongside a fictionalized case vignette that illustrates the content and process of sessions. The paper presents the RIPSToP Model (RelatIonal PSychosexual Treatment for couples with Prostate cancer). The manual was developed and piloted in a mixed-method feasibility and acceptability randomized pilot control trial. Qualitative interviews with clinicians delivering the intervention indicate that the manual was acceptable. Practitioner points A systemic manual for supporting couples after prostate cancer surgery has been developed The manual presents a new model, derived from the literature, focusing on family context and the couple dynamic The model impacts psychological wellbeing, relationship functioning and distress related to sexual functioning Practitioners reported positive views of the manual and adhered to its content and structure