Study protocol for a pragmatic randomised controlled trial of comparing enhanced acceptance and commitment therapy plus (+) added to usual aftercare versus usual aftercare only, in patients living with or beyond cancer: SUrvivors' Rehabilitation Evaluation after CANcer (SURECAN) trial.

BACKGROUND: Two million people in the UK are living with or beyond cancer and a third of them report poor quality of life (QoL) due to problems such as fatigue, fear of cancer recurrence, and concerns about returning to work. We aimed to develop and evaluate an intervention based on acceptance and commitment therapy (ACT), suited to address the concerns of cancer survivors and in improving their QoL. We also recognise the importance of exercise and vocational activity on QoL and therefore will integrate options for physical activity and return to work/vocational support, thus ACT Plus (+). METHODS: We will conduct a multi-centre, pragmatic, theory driven, randomised controlled trial. We will assess whether ACT+ including usual aftercare (intervention) is more effective and cost-effective than usual aftercare alone (control). The primary outcome is QoL of participants living with or beyond cancer measured using the Functional Assessment of Cancer Therapy: General scale (FACT-G) at 52 weeks. We will recruit 344 participants identified from secondary care sites who have completed hospital-based treatment for cancer with curative intent, with low QoL (determined by the FACT-G) and randomise with an allocation ratio of 1:1 to the intervention or control. The intervention (ACT+) will be delivered by NHS Talking Therapies, specialist services, and cancer charities. The intervention consists of up to eight sessions at weekly or fortnightly intervals using different modalities of delivery to suit individual needs, i.e. face-to-face sessions, over the phone or skype. DISCUSSION: To date, there have been no robust trials reporting both clinical and cost-effectiveness of an ACT based intervention for people with low QoL after curative cancer treatment in the UK. We will provide high quality evidence of the effectiveness and cost-effectiveness of adding ACT+ to usual aftercare provided by the NHS. If shown to be effective and cost-effective then commissioners, providers and cancer charities will know how to improve QoL in cancer survivors and their families. TRIAL REGISTRATION: ISRCTN: ISRCTN67900293 . Registered on 09 December 2019. All items from the World Health Organization Trial Registration Data Set for this protocol can be found in Additional file 2 Table S1.

A meta-ethnography investigating relational influences on mental health and cancer-related health care interventions for racially minoritised people in the UK.

OBJECTIVE: Despite calls to increase the 'cultural competence' of health care providers, racially minoritised people continue to experience a range of problems when it comes to health care, including discrimination. While relevant qualitative meta-syntheses have suggested better ways forward for health care for racialised minorities, many have lacked conceptual depth, and none have specifically investigated the relational dimensions involved in care. We set out to investigate the social and cultural influences on health care interventions, focusing on psychological approaches and/or cancer care to inform the trial of a new psychological therapy for those living with or beyond cancer. METHOD: A meta-ethnography approach was used to examine the relevant qualitative studies, following Noblit and Hare, and guided by patient involvement throughout. Papers were analysed between September 2018 and February 2023, with some interruptions caused by the Covid pandemic. The following databases were searched: Ovid MEDLINE, EBSCO CINAHL, Ovid Embase, EBSCO PsycINFO, Proquest Sociology Collection (including Applied Social Sciences Index & Abstracts (ASSIA), Sociological Abstracts and Sociology Database), EBSCO SocINDEX, Ovid AMED, and Web of Science. The systematic review protocol was registered with the International Prospective Register of Systematic Reviews (PROSPERO) (ID: CRD42018107695), and reporting follows the eMERGe Reporting Guidance for meta-ethnographies (France et al. 2019). RESULTS: Twenty-nine journal papers were included in the final review. Themes (third-order constructs) developed in the paper include the centrality of the patient-practitioner relationship; how participants give meaning to their illness in connection to others; how families (rather than individuals) may make health decisions; how links with a higher power and spiritual/religious others can play a role in coping; and the ways in which a hierarchy of help-seeking develops, frequently with the first port of call being the resources of oneself. Participants in studies had a need to avoid being 'othered' in their care, valuing practitioners that connected with them, and who were able to recognise them as whole and complex (sometimes described in relational languages like 'love'). Complex family-based health decision-making and/or the importance of relations with non-human interactants (e.g. God, spiritual beings) were frequently uncovered, not to mention the profoundly emergent nature of stigma, whereby families could be relatively safe havens for containing and dealing with health challenges. A conceptual framework of 'animated via (frequently hidden) affective relationality' emerged in the final synthesis, bringing all themes together, and drawing attention to the emergent nature of the salient issues facing minoritised patients in health care interactions. CONCLUSION: Our analysis is important because it sheds light on the hitherto buried relational forces animating and producing the specific issues facing racially minoritised patients, which study participants thought were largely overlooked, but to which professionals can readily relate (given the universal nature of human relations). Thus, training around the affective relationality of consultations could be a fruitful avenue to explore to improve care of diverse patients.

Evaluating an interactive acceptance and commitment therapy (ACT) workshop delivered to trained therapists working with cancer patients in the United Kingdom: a mixed methods approach.

BACKGROUND: SURECAN (SUrvivors' Rehabilitation Evaluation after CANcer) is a multi-phase study developing and evaluating an Acceptance and Commitment Therapy (ACT) intervention integrated with exercise and work when highly valued (thus we called the intervention ACT+), for people who have completed treatment for cancer but who have low quality of life. We developed a training programme for therapists working in different psychological services to be delivered over 2-3 days. Our aim was to evaluate the extent to which the training could improve therapists' knowledge and confidence to deliver ACT+ to cancer patients in a trial setting. METHODS: Three interactive workshops were delivered to 29 therapists from three clinical settings in London and in Sheffield. A mixed-methods approach was used. Questionnaires were designed to assess knowledge and confidence in using ACT+ with people who have low quality of life after cancer treatment. They were self-administered immediately prior to and after each workshop. Open text-based questions were used to elicit feedback about the workshops alongside a satisfaction scale. Semi-structured interviews were conducted with a purposive sample of therapists (n = 12) to explore their views about the training more deeply, and how it might be optimised. RESULTS: Quantitative analysis showed that knowledge of ACT, as well as confidence in using the ACT+ intervention in this setting increased significantly after training (28.6 and 33.5% increase in the median score respectively). Qualitative analysis indicated that most therapists were satisfied with the content and structure of the programme, valued the rich resources provided and enjoyed the practice-based approach. Potential barriers/facilitators to participation in the trial and to the successful implementation of ACT+ were identified. For some therapists, delivering a manualised intervention, as well as supporting exercise- and work-related goals as non-specialists was seen as challenging. At the same time, therapists valued the opportunity to be involved in research, whilst training in a new therapy model. CONCLUSIONS: Training can effectively improve the knowledge and confidence of therapists from different clinical backgrounds to deliver a modified ACT intervention to cancer patients in a trial setting.

Addressing incontinence for people with dementia living at home: a documentary analysis of local English community nursing service continence policies and clinical guidance.

AIM AND OBJECTIVES: To establish whether the problems and issues experienced by people with dementia living at home and their carers were addressed in the clinical guidance for continence management for community nursing services in England. BACKGROUND: Internationally, the numbers of people with dementia are rising. Managing incontinence is a significant issue as the presence of incontinence is one of the triggers for people with dementia to move their residence to a care home. People with dementia living at home and their family carers report difficulties in accessing knowledgeable professionals and acceptable continence products. DESIGN: A review by documentary analysis of clinical policies and guidance from a sample of community nursing services in all Strategic Health Authority regions of England. METHODS: A sample of clinical policy and guidance documents for continence assessment and management from up to four community nursing services in each of the ten Strategic Health Authority regions in England was sought. Documentary analysis was undertaken on the relevance of the documents identified for people with dementia living at home. FINDINGS: Ninety-eight documents from 38 local community nursing services spread across ten Strategic Health Authority areas were obtained and analysed. Only in the documents of three services were nurses offered detailed guidance about the management of incontinence for people with dementia at home. In the documentation of only one service were people with dementia identified as a special case which warranted the provision of additional continence products. CONCLUSION: Clinical guidance on continence assessment and management for community nurses in many parts of England does not address the specific needs of people with dementia living at home or their carers. RELEVANCE FOR CLINICAL PRACTICE: Nurses working in community settings and those providing clinical leadership in continence care should review their clinical guidance and policies to ensure relevance for people with dementia living at home and their family carers.

Getting ready for user involvement in a systematic review.

OBJECTIVE: This paper aims to support the critical development of user involvement in systematic reviews by explaining some of the theoretical, ethical and practical issues entailed in 'getting ready' for user involvement. BACKGROUND: Relatively few health or social care systematic reviews have actively involved service users. Evidence from other research contexts shows that user involvement can have benefits in terms of improved quality and outcomes, hence there is a need to test out different approaches in order to realize the benefits of user involvement and gain a greater understanding of any negative outcomes. DESIGN: Setting up a service-user reference group for a review of user involvement in nursing, midwifery and health visiting research involved conceptualizing user involvement, developing a representation framework, identifying and targeting service users and creating a sense of mutuality and reciprocity. SETTING AND PARTICIPANTS: Recruitment was undertaken across England by two researchers. Members from 24 national consumer organizations were selected to participate in the review. MAIN VARIABLES STUDIED: Learning was gained about finding ways of navigating consumer networks and organizations, how best to communicate our goals and intentions and how to manage selection and 'rejection' in circumstances where we had stimulated enthusiasm. RESULTS AND CONCLUSIONS: Involving service users helped us to access information, locate the findings in issues that are important to service users and to disseminate findings. User involvement is about relationships in social contexts: decisions made at the early conceptual level of research design affect service users and researchers in complex and personal ways.

Service user involvement in nursing, midwifery and health visiting research: a review of evidence and practice.

OBJECTIVES: In the UK policy recommends that service users (patients, carers and the public) should be involved in all publicly funded health and social care research. However, little is known about which approaches work best in different research contexts and why. The purpose of this paper is to explain some of the theoretical limitations to current understandings of service user involvement and to provide some suggestions for theory and methods development. This paper draws upon findings from a review of the research 'evidence' and current practice on service user involvement in the design and undertaking of nursing, midwifery and health visiting research. DESIGN: A multi-method review was commissioned by the NHS Service Delivery and Organisation (SDO) Research and Development Programme. The timeframe was April 2004-March 2005. The full report (Ref: SDO/69/2003) and supplementary bibliography are available from: http://www.sdo.lshtm.ac.uk. REVIEW METHODS/DATA: Initial searches of the health and social care literature and consultations with researchers were used to develop a broad definition of the topic area. A service user reference group (26 members) worked with the project team to refine the scope of the review, to set inclusion criteria and develop a framework for the analysis. Systematic searches of the literature were undertaken online and through library stacks (345 relevant documents were identified). Ongoing and recently completed studies that had involved service users were identified through online databases (34 studies) and through a national consultation exercise (17 studies). Selected studies were followed up using telephone interviews (n=11). Members of the service user reference group worked with the research team to advise on key messages for dissemination to different audiences. RESULTS: Information was gained about contextual factors, drivers, concepts, approaches and outcomes of service user involvement in nursing, midwifery and health visiting research, as well as developments in other research fields. Synthesis of this information shows that there are different purposes and domains for user involvement, either as part of researcher-led or user-led research, or as part of a partnership approach. A number of issues were identified as being important for future research. These include: linking different reasons for service user involvement with different outcomes; understanding the relationship between research data and service user involvement, and developing conceptualisations of user involvement that are capable of accommodating complex research relationships. Suggestions for the development of practice include: consideration of diversity, communication, ethical issues, working relationships, finances, education and training. CONCLUSIONS: Because research is undertaken for different reasons and in different contexts, it is not possible to say that involving service users will, or should, always be undertaken in the same way to achieve the same benefits. At a research project level uniqueness of purpose is a defining characteristic and strength of service user involvement.

Standing secure amidst a falling world? Practitioner understandings of old age in responses to a case vignette.

The specialist knowledge and skills of health and social care practitioners working with older people are often unacknowledged. This paper examines an important aspect of specialist knowledge, the understandings of ageing and old age that underpin practice in a society where negative assumptions about old age and older people are widespread. These understandings were explored through analysis of data from 30 interviews with health and social care practitioners working with older people at risk of falling. The interviews centred on a case vignette and the analysis presented here focuses on respondents' perceptions of the scenario and of the reluctance of its subject, a 79-year-old woman, to seek help after a fall. The findings suggest that practitioners' understandings of older people are grounded in practice and personal experience, with little evidence of the use of theoretical or research-based knowledge of ageing and old age. This suggests that the potential for formal knowledge of ageing to support reflective and empowering practice with older people has yet to be fully exploited. The paper concludes with a discussion of the relevance to interprofessional practice of gerontological theory and research and suggestions for further research.

Involving older people in research: methodological issues.

The policy imperative to increase public participation in health and social care research, planning and service delivery raises significant questions about optimum approaches, methods and the extent to which this policy can influence change in practice. This paper highlights the key policy literature on user involvement and participatory research methods to establish the context for a partnership research project exploring perceptions of risk in relation to falls from the perspectives of older people, carers, and health and social care professionals. The paper reports the methods used in developing user involvement in the research at a number of levels, including project management, and a consumer panel working alongside the research team and influencing the dissemination in local falls prevention strategies. The authors draw out the issues related to the context and method of involvement, and discuss the impact on research quality and local service development in health and social care.

Behavior change and achieving hospital discharge in persons with severe, chronic psychiatric disabilities.

Economic and political pressures have led state governments to shrink and close long-term psychiatric inpatient units in favor of community-based treatment. These pressures present inpatient clinicians with an opportunity to examine their clinical practices and question whether the focus of treatment addresses the behaviors most relevant to helping patients achieve discharge and maintain community tenure. The social learning approach of Gordon Paul is the empirically validated treatment of choice for long-term psychiatric inpatients. In this study, we compared changes in daily functioning of sixty-four chronic psychiatric inpatients treated in two rehabilitation programs based extensively on Gordon Paul's social learning approach. Half of the participants were successfully discharged from the hospital. Analysis found both similarities and differences in behavioral improvements between the groups. These results provide some clarity to the relationship between selfcare skills, participation in programs, maladaptive behaviors, and achieving hospital discharge for chronically hospitalized individuals.