Erna Haraldsdottir

Goal setting in palliative care: A structured review

Abstract Background Palliative care and rehabilitation both aim to support patients to live as actively as possible. Goal setting has been identified in health policy and clinical guidelines as a mechanism to achieve this. While goal setting is well established in traditional rehabilitation, it is unclear how it should be implemented within palliative care where people are faced with diminishing abilities. Aim To identify and synthesize published literature regarding goal setting in palliative care. Method Electronic searches were carried out on MEDLINE, PSYCHINFO, EMBASE, CINAHL, ASSIA, and Google Scholar databases between November 2010 and January 2011. Papers were included if they focused on patient-centred goal setting in palliative care. No restrictions were placed on study design or type of paper. Papers were classified according to the type and design and research papers were quality appraised. Papers were read and analysed using framework analysis. Findings Sixteen papers met the inclusion criteria. Three themes were identified: 1. Definitions, process, and functions of goal setting;2. The challenges of delivering goal setting;3. Theories underpinning goal setting. Conclusions Goal setting is recognized as an important component of patient-centred palliative care, but there is no agreement regarding ‘best practice’ and clinicians face particular challenges when trying to set goals with patients in this context. Little attention has been paid to developing a robust, theory-based approach to goal setting in this setting. Hope theory and theories of how people adapt to life-threatening illness could inform the process of goal setting in palliative care.

The BMEA study: the impact of meridian balanced method electroacupuncture on women with chronic pelvic pain—a three-arm randomised controlled pilot study using a mixed-methods approach

Introduction Chronic pelvic pain (CPP) affects 3–4% of women worldwide. Proven treatments for CPP are limited and unsatisfactory. The meridian balance method (BM) electroacupuncture (EA) treatment (BMEA + Traditional Chinese Medicine Health Consultation (TCM HC) may be effective for CPP. Previous EA studies have demonstrated an analgesic effect. Large-scale studies on acupuncture for other chronic pain conditions suggest that patient-healthcare provider interaction might play a role in pain reduction. We propose a pilot study to explore the effectiveness of the meridian BMEA treatment in managing women with CPP to inform a future large randomised controlled trial. Methods and analysis A 3-armed randomised controlled pilot study is proposed with an aim to recruit 30 women with CPP in National Health Service (NHS) Lothian. Randomisation will be to BMEA treatment, TCM HC or standard care (SC). Validated pain, physical and emotional functioning questionnaires will be administered to all participants at weeks 0, 4, 8 and 12. Focus group discussions will be conducted when week 12 questionnaires are completed. The primary objective is to determine, recruitment and retention rates. The secondary objectives are to assess the effectiveness and acceptability of the proposed methods of recruitment, randomisation, interventions and assessment tools. Ethics and dissemination Ethical approval has been obtained from the Scotland Research Ethics Committee (REC 14/SS/1022). Data will be published in peer-reviewed journals and presented at international conferences. Trial registration number NCT02295111.

Distance education methods are useful for delivering education to palliative caregivers: A single-arm trial of an education package (PalliativE Caregivers Education Package)

Background: Face-to-face/group education for palliative caregivers is successful, but relies on caregivers travelling, being absent from the patient, and rigid timings. This presents inequities for those in rural locations. Aim: To design and test an innovative distance-learning educational package (PrECEPt: PalliativE Caregivers Education Package). Design: Single-arm mixed-method feasibility proof-of-concept trial (ACTRN12616000601437). The primary outcome was carer self-efficacy, with secondary outcomes focused on caregiver preparedness and carer tasks/needs. Analysis focused on three outcome measures (taken at baseline and 6 weeks) and feasibility/acceptability qualitative data. Setting and participants: A single specialist palliative care service. Eligible informal caregivers were those of patients registered with the outpatient or community service, where the patient had a prognosis of ⩾12 weeks, supporting someone with nutrition/hydration and/or pain management needs, proficient in English and no major mental health diagnosis. Results: Two modules were developed and tested (nutrition/hydration and pain management) with 18 caregivers. The materials did not have a statistically significant impact on carer self-efficacy. However, statistically significant improvements were observed on the two subsidiary measures of (1) caregiving tasks, consequences and needs (p = 0.03, confidence interval: 0.72, 9.4) and (2) caregiver preparedness (p = 0.001, confidence interval: −1.22, −0.46). The study determined that distance learning is acceptable and feasible for both caregivers and healthcare professionals. Conclusion: Distance education improves caregiver preparedness and is a feasible and acceptable approach. A two-arm trial would determine whether the materials benefitted caregivers and patients compared to a control group not receiving the materials. Additional modules could be fruitfully developed and offered.

The impact of meridian balance method electro-acupuncture treatment on chronic pelvic pain in women: a three-armed randomised controlled feasibility study using a mixed-methods approach

Introduction: Chronic pelvic pain (CPP) is estimated to affect 6%–27% of women worldwide. In the United Kingdom, over 1 million women suffer from CPP and it has been highlighted as a key area of unmet need. Standard treatments are associated with unacceptable side effects. The meridian balance method electro-acupuncture (BMEA), and traditional Chinese medicine health consultation (TCM HC) (BMEA + TCM HC = BMEA treatment) may be an effective adjunct to standard treatment. Aim: The aim of our study was to evaluate the feasibility of a future trial, to determine the effectiveness of the BMEA treatment for CPP in women. The primary objectives were to determine recruitment and retention rates. The secondary objectives were to assess the effectiveness of the BMEA treatment and acceptability of the study’s methodology. Methods: Women with CPP were randomised into BMEA treatment (group 1), TCM HC alone (group 2) (each intervention administered twice weekly for 4 weeks) or National Health Service standard care (NHS SC, group 3). Primary outcomes were assessed by the proportion of eligible participants randomised, and the proportion of randomised participants who returned follow-up questionnaires. Interventions were assessed by validated pain/physical/emotional functioning questionnaires at baseline (0), 4, 8 and 12 weeks. Focus groups and semi-structured telephone interviews were embedded in the study. Results: A total of 30 women (51% of those referred) were randomised over 8 months. Retention rates were 80% (95% confidence interval (CI): 74–96), 53% (95% CI: 36–70) and 87% (95% CI: 63–90), in groups 1, 2, and 3, respectively. Qualitative data suggested a favourable trial experience in groups 1 and 3. Discussion: Group 2 retention rate was problematic and has implications for our next trial. Conclusion: Our study suggests that a future trial to determine the effectiveness of BMEA treatment for women with CPP is feasible but with modifications to the study design.

28 Quality of life of patients attending marie curie day hospice over time: preliminary findings from a prospective cohort study

Introduction Palliative care day services (PCDS) is a popular if variable palliative intervention provided on a routine basis in many hospices. Aim and method To understand PCDS within Marie Curie hospices we set out to identify the structure process and outcome associated with the service. We present preliminary data on quality of life from the Edinburgh service. A prospective cohort design was used to describe outcomes over an eight-week period. Attendance was recorded. Participants were invited to complete a set of questionnaires to assess quality of life at baseline four weeks and eight weeks post-baseline. Patient assessment involved completion of questionnaires covering physical and emotional health quality of life and wellbeing. The primary outcome measure was QoL as assessed by the McGill Quality of Life scale. Results Over a nine-week period at one day hospice nine patients and five carers consented to participate. Of the nine patients eight were assessed at four-weeks post baseline (one patient was in hospital); seven patients were assessed at eight weeks post-baseline (one patient had died; one was unwell). Over the eight-week follow up period the total mean score remained stable. The single item quality of life score increased a little (as has quality of health care and environment) whilst symptoms worsened as might be expected in this population. Conclusion Day services may sustain quality of life in spite of deteriorating health. Further data collection from two other sites is underway to enhance sample size.

P-119 Development, implementation and evaluation of a theory based goal setting framework in a hospice

Background Rehabilitation and goal setting can support one of the key principles of palliative care, to help people live actively until they die. Until recently, no theory based practice framework has existed. A framework for goal setting in palliative care (G-AP-PC) was therefore developed and implemented systematically, through 4 phases, in one hospice. Aims To develop and implement a theory based goal setting framework to guide and support patient-centred goal setting in practice. Methods Phase 1: Gathering information about goal setting practice through a structured literature review and observation of practice in one hospice. Phase 2: Identifying and applying theories which could underpin a goal setting framework and support patient-centred goal setting. Phase 3: Use of a participatory approach, based on Normalisation Process Theory (NPT) to develop and implement a framework for goal setting. Phase 4: Evaluation of the impact of implementing GAP-PC, using interviews (patients/professionals), a questionnaire (professionals) and case note analysis. Results G-AP PC was successfully implemented. It helped professionals to work as a team; shift their attention from a solely symptoms/problems/risk based approach to focusing on patients’ goals; act on what patients wanted to achieve, within short timescales, with documentaryevidence of practice. Patients reported that use of G-AP PC allowed them to focus on goals that were important to them. There was also evidence that goal setting helped increase their motivation and self-efficacy. Conclusions and application to hospice practice Use of an explicit, theory based goal setting framework provides a mechanism for ensuring that individual, patient centred goals are established, documented and reviewed. It also helps professionals focus on what is important to patients. Following successful implementation in one ward, G-AP PC is now being used throughout the hospice to support people to live until they die. Future research will explore the potential application of this framework to other palliative care settings.

P-12 Art and hospice care- building a strategic relationship

Background A Hospice in Scotland has demonstrated a commitment to integrate creative and decorative art into its day to day practice. In order to achieve this a five year Art Strategy was developed in collaboration with an artist with over fifteen year experience in the field of therapeutic art and design in a wide range of healthcare contexts. The development of the art strategy was funded by Creative Scotland. The process of writing the strategy Five months consultation period with the hospice staff, volunteers and patients, artists, cultural organisation and potential funders. A number of workshops and consultation approaches entitled ‘we need to talk’ were employed to understand patients’, staffs’, volunteers’ and visitors’ needs and aspirations. Other key activates were: A Drop in Day for staff and volunteers. A Seminar Day with staff, volunteers, local professional artists and representatives from cultural organisations. Art workshops with patients. Implementation of the art strategy The strategy proposes a programme of activities that will offer appropriate therapeutic engagement for patients, families and staff. A social programme is designed to bring in the wider community into the hospice building and grounds to reduce stigma and to ensure that the hospice becomes an accessible, lively and interesting part of the local community. Eleven proposed projects have been identified within the themes of: Sensitive spaces, exhibition spaces, partnership residence projects, the social programme, staff project, research project and emergent artist mentoring scheme. What we will achieve with the strategy Permanent public art elements for sensitive spaces enhancing a therapeutic environment Space within the hospice exhibiting patients’ and artists’ work Event programme attracting the public into the hospice. Therapeutic art as part of hospice activates for staff, patients and families. Long term partnership with arts organisations and link with the local professional creative community.

Goal setting in palliative care: a structured literature review

Objectives To identify and synthesise existing literature on goal setting in palliative care, with a view to identifying a conceptual framework to underpin the process. Methods Searches were conducted using MEDLINE, PSYCHINFO, EMBASE, CINAHL, ASSIA and Google Scholar data bases between November 2010 and January 2011. Additional articles were located by screening the reference lists of those which were included. Papers were included if they focused on patient centred goal setting for patients with palliative care needs. Included papers were categorised according to type (quantitative, qualitative, mixed methods, literature review, conceptual, opinion or practice based). Research papers were quality appraised. Critical interpretive synthesis was used to analyse and synthesise data. Results 16 papers about goal setting in palliative care were included (four quantitative, one mixed methods, three qualitative, one literature review, three conceptual, one opinion based and three practice based). Research papers varied in quality and primary focus. There was no clear definition of goal setting. Three themes emerged: what goal setting is; challenges and factors that affect goal setting and emerging theory/conceptual underpinning of goal setting. Conclusions Patient centred goal setting is recognised as an important component of palliative care and is described as beneficial for patients, families and professionals. It is proposed as a method of ensuring that care is patient led, giving patients a sense of control and bringing meaning. Goal setting appears to be slightly different in palliative care as compared to general rehabilitation settings, primarily because palliative care patients are dealing with deteriorating conditions, often at unpredictable rates. Hope theory and adaptation to life threatening illness provide useful adjuncts to already established theoretical goal setting literature.