Evaluation of the Reading Well Books on Prescription Shelf Help scheme for young people

Executive Summary It is estimated that 2,773,460 people under 17 are in need of child and adolescent mental health services provided by the GP or schools. It is also known that half of all anxiety disorders - the most common mental health condition - are experienced before the age of 12 years old. Young people face many risk factors for poor mental health but not all young people with mental health conditions seek support or receive the support or services they need. The current environment of austerity means that there is decreasing resourcing of the third sector and increasing pressure on CAMHS. ‘Shelf Help’ is the name that has been used to market the Reading Well for young people scheme. It is a reading list for those who experience mental health problems between 13-18yrs old, or are friends with, live with, or care for people who do and is. Shelf Help is delivered in partnership with the Society of Chief Librarians as part of the Chief Librarian’s Universal Health Offer. Reading Well for young people is endorsed by health professionals and supported by public libraries and provides advice of specific topics such as anxiety, depression, stress, OCD, self-harm, bullying, eating disorders, autism and aspergers as well as general topics to do with adolescence. This research report documents the impact of introducing ‘Shelf Help’ – the Reading Well for young people scheme - into a secondary school environment in partnership with a local charity, which supports the mental wellbeing of young people. Adult stakeholders were interviewed during a scoping phase (n=12) to determine how to discretely monitor the usage and impact of the Reading Well for young people at The Priory School and Phase, in Hitchin. Multiple copies of the reading list were given to the School and Phase, and young people were left to interact with the books for 3 months (Dec 2016 – February 2017. The engagement with the books was monitored at each site. Young people and key adult stakeholders were consented to take part in focus groups and interviews (during March 2017). Qualitative analysis of interviews focus groups used to determine the impact of engaging with the Reading Well for young people books. 33 participants provided qualitative data for the project, 18 young people and 15 adults. 26 participants (8 adults and 18 young people) took part in focus groups and interviews to determine engagement with and impact with the scheme. Innovative and successful approaches to getting young people to engage with Shelf Help books were devised e.g. Creating a wellbeing corner in the library, selecting a’ book of the week’, promoting the scheme to the whole school to create inclusivity and talking points, making Shelf Help the focus of wellbeing events, a staff reading challenge, opportunity to write short reviews for other library users. Books were recommended to service users of Phase which included young people and parents. 128 Reading Well for young people books were borrowed from the library by 67 people during the 3 months, a further 35 titles were borrowed by 18 users at Phase. Borrowers ranged from year 7 to year 11 as well as adults. Several titles were renewed and many were continually on loan for the duration of the project. Interestingly, many people used the wellbeing corner to browse and read books during break-times, without taking out loans. Many positive impacts of reading the Shelf Help books were identified. Four key themes emerged in the qualitative research analysis: Improved awareness, knowledge and understanding of mental health conditions. Improved emotional and mental wellbeing, specifically relating to confidence, self-esteem, hope, isolation and emotional intelligence Changes in behaviour and improved relationships Normalising and destigmatizing mental health discussions. Through piloting Shelf Help in a secondary school and charity setting there were several areas of learning going forwards. The books can be accessed by people with low, moderate or severe mental health conditions, thus suggestions to develop a supportive environment include: Ensuring appropriate training in mental first aid to key staff involved in the shelf help scheme – this may include staff who would not normally have this training. Provide time and access for staff to read through the list of books and familiarise themselves with the content prior to rolling out to the whole organisation. Providing activities, or book groups that would allow young people to discuss the books they have been reading within a facilitated environment, especially where some books may make young people feel sad or upset. Ensure the use of the Shelf Help leaflet as much as possible, specifically as it has contact number for support organisations that can be contacted, often 24/7. In conclusion, all participants found the Reading Well for young people scheme highly acceptable and the inclusive approach has supported an increase in discussion about mental health in each organisation that piloted ‘Shelf Help’. Further research should now be conducted to further understand the impact of the Reading Well for young people scheme on wellbeing and resilience

What does successful social prescribing look like? Mapping meaningful outcomes

This study aimed to investigate and collate all the outcomes that are being experienced in link worker based social prescribing schemes. We found this reflects a large evidence gap where research money needs to be invested. Data from this study highlighted that VCSE organisations engaged with social prescribing are not receiving full attribution for their contribution to improving the health and wellbeing of people. Within the literature, there are a range of reports and research articles that support the use of community organisations and services. Little of this knowledge or impact, however, is contextualised within the terms of link worker based social prescribing schemes

Making Sense of Social Prescribing

This report is a guide to commission, running and evaluating social prescribing schemes

Service Evaluation of 'Living Well with the Impact of Cancer' Courses

The aim of the Penny Brohn Cancer Care Living Well Service Evaluation was to measure the level of benefit that participants were receiving from the Penny Brohn Cancer Care(PBCC)Living Well course and to inform current and future service provision at PBCC. The Penny Brohn Whole Person Approach model(PB-WPA model), which underpins the Living Well course, was designed to support the ‘whole person’ and the course was intended to meet the needs of people with cancer, as identified by the National Cancer Survivorship Initiative (NCSI). The combined qualitative and quantitative results of the Living Well Service Evaluation have demonstrated, very clearly at times, that participants were highly satisfied with the course. The immediate benefit of attending was measurable, in terms of improved health related quality of life (HRQoL) and improved MYCaW (Measure yourself Concerns and Wellbeing) concerns and wellbeing. The evaluation results show that the Living Well course experience enabled the majority of participants to regain control over many aspects of their life, and to start taking responsibility for their health. The following aspects of the course were identified as the most helpful: -Specific units of ‘education and explanation’ about cancer and why healthy lifestyle changes to areas such as diet, exercise and relaxation are beneficial -Advice and education from medical doctors -The opportunity to share experiences with other participants For some, this empowerment led to long-term changes in exercise, food consumption,use of self-help techniques and the ability to communicate more freely and openly with family, friends and medical professionals. These improvements were reflected in the 12 month outcome data, where a sustained improvement in HRQoL and MYCaW concerns was reported by many clients. Such patient reported outcome measures (PROMs) are limited in what they can measure, thus qualitative data were also collected to ensure that participants were able to share their experiences (positive or negative) of the Living Well course, and their subsequent experiences of applying the education and techniques learnt on the course. A picture emerged that identified difficulties in sustaining lifestyle changes at around the 3-6 month follow-up. Participants who returned to PBCC within the 12 month follow-up period, however, were more likely to benefit by reporting a greater improvement in HRQoL and MYCaW scores, plus an improved understanding of how to make and maintain healthy lifestyle changes to suit their individual circumstances. In regards to the current NCSI priorities, it is hoped that the data reported in this evaluation go some way to informing the following: -Information and support from the point of diagnosis -Managing the consequences of treatment -Promoting recovery -Sustaining recovery -Supporting people with active and advanced disease -Improving survivorship intelligence Finally, this report demonstrates how a patient-centred model of support can be effectively evaluated to provide relevant, practical and evidence-based information to commissioners. Participant satisfaction: Participants were very satisfied with the course content, course delivery and resources provided which often exceeded their needs and expectations. Participant outcomes: The PB-WPA model successfully encompassed and supported all the types of concerns participants arrived with. The most frequently reported participant concerns were psychological and emotional,about their wellbeing and about their physical health. On average, participants experienced statistically and clinically significant improvements in their MYCaW concern and wellbeing scores, and total HRQoL scores,which remained improved over the 12 month follow-up. The aspects of HRQoL that were most likely to improve after attending the Living Well course were spiritual, emotional and functional wellbeing. Supporters had their own profile of concerns, namely psychological and emotional,supporter specific concerns and practical concerns. Concerns were as severely rated as those from participants with a diagnosis of cancer and also showed statistically significant average improvements throughout the 12 month follow-up. The small group of participants with metastatic disease reported significant improvements in their MYCaW concern scores, in line with the whole evaluation group,and a significantly greater improvement in HRQoL over 12 months compared to participants with primary cancer.Participants who returned for more support from PBCC were in more need of support than those who did not return. They were more likely to have poorer HRQoL at baseline and rate their concerns more severely. Participants who returned to PBCC experienced more improvement in HRQoL that was likely to be clinically significant. These participants also had a greater degree of improvement in their MYCaW concerns, compared to non-returners. Over half of the participants experienced new concerns over the 12 month follow-up period. Concerns were most frequently associated with psychological and emotional and physical issues. Furthermore, at 12 months, participants were still experiencing arange of health issues

Integrative Whole Person Oncology Care in the UK

The term ‘whole person cancer care’ - an approach that addresses the needs of the person as well as treating the disease - is more widely understood in the UK than its synonym ‘integrative oncology”. The National Health Service (NHS), provides free access to care for all, which makes it harder to prioritise NHS funding of whole person medicine, where interventions may be multi-modal and lacking in cost-effectiveness data. Despite this, around 30% of cancer patients are known to use some form of complementary or alternative medicine (CAM). This is virtually never medically led, and usually without the support or even the knowledge of their oncology teams, with the exception of one or two large cancer centres. UK oncology services are, however, starting to be influenced from three sides; firstly, by well-developed and more holistic palliative care services; secondly, by directives from central government via the sustainable healthcare agenda; and thirdly, by increasing pressure from patient-led groups and cancer charities. CAM remains unlikely to be provided through the NHS, but nutrition, physical activity, mindfulness, and stress management are already becoming a core part of the NHS ‘Living With and Beyond Cancer’ agenda. This supports cancer survivors into stratified pathways of care, based on individual, self-reported holistic needs and risk assessments, which are shared between healthcare professionals and patients. Health and Wellbeing events are being built into cancer care pathways, designed to activate patients into self-management and support positive lifestyle change. Those with greater needs can be directed towards appropriate external providers, where many examples of innovative practice exist. These changes in policy and vision for the NHS present an opportunity for Integrative Oncology to develop further and to reach populations who would, in many other countries, remain underserved or hard-to-reach by whole person approaches

Using a whole person approach to support people with cancer: a longitudinal, mixed methods service evaluation

Introduction: Improved models of care are needed to meet all the support needs of people with cancer, which encompass psychological, emotional, physical, spiritual, sexual, occupational, social and existential needs. The aim of this paper is to (1) evaluate short and long-term impacts of using a whole person approach to support people with cancer on the Living Well with the Impact of Cancer Course (LWC); (2) use these data to inform strategic decisions about future service provision at Penny Brohn UK. Methods: Longitudinal mixed-methods service evaluation (n=135). Data collected included health related quality of life (HRQoL) (FACIT-SpEx); Concerns (types and severity - MYCaW); lifestyle behaviour (bespoke questionnaire) and participants’ experiences over 12 months post course. Results: Statistically and clinically significant improvements from baseline - 12 months in severity of MYCaW Concerns (n=64; p<0.000) and mean total HRQoL (n=66; p<0.000). The majority of MYCaW concerns were ‘psychological and emotional’ and about participants’ wellbeing. Spiritual, emotional and functional wellbeing contributed most to HRQoL improvements at 12 months. Barriers to maintaining healthy lifestyle changes included lack of support from family and friends, time constraints, and returning to work. 3-6 months post-course was identified as the time when more support was most likely to be needed. Conclusions: Using a whole person approach for the LWC enabled the needs of participants to be met, and statistically and clinically significant improvements in HRQoL and MYCaW Concerns were reported. Qualitative data analysis explored how experiencing whole person support enabled participants to make and sustain healthy lifestyle changes associated with improved survivorship. Barriers experienced to making health behaviour change were also identified. These data then informed wider and more person-centred clinical provision to increase the maintenance of positive long-term behaviour changes. Comparison of whole person approaches to cancer treatment and support and standard care are now urgently needed

The Responsiveness, Content Validity, and Convergent Validity of the Measure Yourself Concerns and Wellbeing (MYCaW) Patient-Reported Outcome Measure

Objective Measure Yourself Concerns and Wellbeing (MYCaW) is a patient-centred questionnaire that allows cancer patients to identify and quantify the severity of their ‘Concerns’ and Wellbeing, as opposed to using a pre-determined list. MYCaW administration is brief and aids in prioritising treatment approaches. Our goal was to assess the convergent validity and responsiveness of MYCaW scores over time, the generalisability of the existing qualitative coding framework in different complementary and integrative healthcare settings and content validity. Methods Baseline and 6-week follow-up data (n=82) from MYCaW and FACIT-SpEx questionnaires were collected for a service evaluation of the ‘Living Well With The Impact of Cancer’ course at Penny Brohn Cancer Care. MYCaW construct validity was determined using Spearman's Rank Correlation test, and responsiveness indices assessed score changes over time. The existing qualitative coding framework was reviewed using a new dataset (n=158) and coverage of concern categories compared to items of existing outcome measures. Results Good correlation between MYCaW and FACIT-SpEx score changes were achieved (r= -0.57, p≥0.01). MYCaW Profile and Concern scores were highly responsive to change: SRM=1.02 and 1.08; effect size=1.26 and 1.22. MYCaW change scores showed the anticipated gradient of change according to clinically relevant degrees of change. Categories including ‘Spirituality’, ‘weight change’ and ‘practical concerns’ were added to the coding framework to improve generalisability. Conclusions MYCaW scores were highly responsive to change, allowing personalized patient outcomes to be quantified; the qualitative coding framework is generalisable across different oncology settings and has broader coverage of patient-identified concerns compared with existing cancer-related patient-reported outcome measures

Journal flipping: A case study from Metropolitan Universities

Poster presented at IUPUI Research Day, April 8, 2016Recent events in scholarly publishing, such as the editorial board of Elsevier’s Lingua resigning en masse, shed light on the dilemma faced by many journal editors: balancing a desire to increase impact with promoting open and sustainable models for publishing. These two goals are not mutually exclusive. Recently, editors and publishers are seeing success in reconciling these goals by converting subscription-based journals to open-access, through a process commonly called journal flipping. The IUPUI University Library has a history of supporting the publication of open-access scholarly journals through its Open Access Journals at IUPUI program (http://journals.iupui.edu/). A number of titles, most notably Advances in Social Work and Metropolitan Universities, began as subscription-based journals that were only available in print. This poster presents the process for "flipping" Metropolitan Universities, digitizing the full run of issues and making them openly available via IUPUI’s instance of Open Journal Systems

Working with people affected by cancer – Phase 1 of a mixed methods exploration of practitioner perspectives in nutritional therapy

Introduction - Nutritional therapy (NT) is a bioscience-based branch of complementary and alternative medicine (CAM) with National Occupational Standards (NOS) and accredited training courses which include compulsory clinical training. Approximately 900 practitioners are registered with the voluntary regulator, the Complementary and Natural Healthcare Council (CNHC), but the number of unregulated practitioners is unknown. Cancer is a leading cause of death worldwide; nutrition and lifestyle factors may affect recurrence and survival rates. Many cancer patients and survivors seek individualised advice on diet and use of supplements and appropriately skilled nutritional therapy practitioners (NTP) may be well-placed to safely provide this advice. Little is known of NTPs’ perspectives on working with people affected by cancer; this study seeks to explore their views on training, use of evidence and other resources, to support the development of safe evidence-based practice in this important clinical area. Methods – An on-line anonymised questionnaire collected data from participants recruited from all UK registered NTPs. Recruitment was facilitated by the British Association for Applied Nutrition and Nutritional Therapy (BANT). Quantitative data on practitioner characteristics, years in practice, other therapies practiced and work with cancer clients were collected. Qualitative data on types of evidence used, barriers to practice and perceived training and support needs when working with clients with cancer, were collected and analysed. SPSS was used to produce descriptive statistics. Preliminary Results – 274/888 (31%) of registered NTPs participated. 61% respondents had accredited NT qualifications of which 46% were at degree or post-graduate level. 73% (202) participants indicated they also had other higher education qualifications, including 153 (56%) at degree or above. When asked to describe their position on cancer work, 17% respondents (40/238) indicated no interest, and 35% (84/238) respondents already work with cancer clients (cancer practitioners - CP). A further 48% (114/238) respondents expressed interest in starting cancer work, and typically requested specialist training and practice guidelines to support this area of clinical practice. Cancer practitioners (CP) rated searches of peer-reviewed literature as most useful for information to support practice, whereas commercial product information was rated least useful. CPs requested engagement with mainstream medicine, more access to research evidence and professional recognition to facilitate and support work with cancer clients. A need for professional networking, mentorship and/or supervision was noted by CP and non-CP respondents, which is of interest since 81% all participants worked as sole practitioners exclusively or as part of their practice, <1% worked within the NHS. Discussion & Conclusions – This is the first detailed documentation of NTP perspectives on cancer work. A number of areas have been identified for further detailed evidence to be collected using focus groups and interviews, including detailed training needs, communication with mainstream cancer professionals, access to research evidence, and professional recognition. This work will inform and support the development of professional practice guidelines for NT and inform the development of specialist training and other resources