The development and evaluation of a Goal setting and Action Planning framework for use in Palliative Care (G-AP PC)

Background: Palliative care is a support system to help people live actively until they die. Current policy aims to integrate rehabilitation and goal setting as mechanisms to help professionals to support patients to do this, but there is little agreement about what this means in practice. No theory based framework currently exists to help palliative care professionals consistently work with patients to identify and work towards goals. This thesis describes how a framework for goal setting and action planning in palliative care (G-AP PC) was developed and implemented systematically in one hospice. Research aims: 1. To synthesise published literature regarding goal setting in palliative care settings. 2. To investigate current goal setting practice in one hospice setting. 3. To develop and evaluate a theory and evidence-based goal setting intervention for palliative care settings. Study design This study is placed in the ‘development and feasibility’ phases of the Medical Research Council (MRC) framework for developing and evaluating complex interventions. The intervention (G-AP PC) was systematically developed. Firstly a rigorous investigation of current practice was conducted by synthesising the literature on the subject, and investigating current goal setting practice in one hospice setting. These findings informed the development of a theory-based Goal setting and Action Planning practice framework (G-AP PC) which was then implemented and evaluated in one hospice in-patient unit. Normalization Process Theory (NPT) was used to structure the development and evaluation of the intervention. Findings: Goal setting with patients is recognised as important within palliative care, but is poorly conceptualised and lacks a theory and evidence-base for its practice. G-AP PC was successfully developed, implemented and evaluated in one hospice setting. Findings demonstrate that G-AP PC is acceptable and feasible for use by professionals and patients alike. It helped professionals to work as a team; shift their attention from symptoms/problems/risk to patient’s goals; act on what patients wanted to achieve, within short timescales and document patients goals appropriately. 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 patients’ motivation and self-efficacy. Conclusions: G-AP PC is a feasible and acceptable intervention. The study has demonstrated that the interventions can increase patient centred goal setting and motivates both patients and staff to work towards and achieve patient goals that are not only about controlling symptoms but also about engaging in meaningful activities, enabling patients to live actively until they die

Electronic swallowing intervention package to support swallowing function in patients with head and neck cancer: development and feasibility study

Background: Many patients undergoing treatment for head and neck cancer (HNC) experience significant swallowing difficulties, and there is some evidence that swallowing exercises may improve outcomes, including quality of life. This feasibility study developed an evidence-based, practical Swallowing Intervention Package (SiP) for patients undergoing chemo-radiotherapy (CRT) for HNC. As part of the study, an electronic version of SiP (e-SiP) was concurrently developed to support patients to self-manage during treatment. This paper reports on the e-SiP component of this work. Objective: To develop and conduct preliminary evaluation of an electronic support system (e-SiP) for patients undergoing CRT for head and neck cancer. Methods: The study involved health professionals and patients who were undergoing CRT for head and neck cancer. The scoping stage of e-SiP development involved investigated the potential usefulness of e-SiP, exploring how e-SiP would look and feel and what content would be appropriate to provide. Patient and carer focus groups and a health professionals’ consensus day were used as a means of data gathering around potential e-SiP content. A repeat focus group looked at an outline version of e-SIP and informed the next stage of its development around requirements for tool. This was followed by further development and a testing stage of e-SiP involved the coding of a prototype which was then evaluated using a series of steering group meetings, semi-structured interviews with both patients and health care professionals, and analysis of e-SiP log data. Results: Feedback from focus groups and health professional interviews was very positive and it was felt e-SiP use would support and encourage patients in conducting their swallowing exercises. However, of the ten patients offered e-SIP, only two opted to use it. For these patients, aspects of the e-SIP application were considered useful, in particular the ease of keeping a diary of exercises performed. Interviews with users and non-users suggested significant barriers to its use. Most significantly the lack of flexibility of platform on which e-SiP could be accessed appeared a dominant factor in deterring e-SiP use. Conclusions: Results suggest a need for further research to be conducted around the implementation of e-SiP. This involves evaluating how e-SiP can be better integrated into usual care, and through patient training and staff engagement, can be seen as a beneficial tool to help support patients in conducting swallowing exercises

Mind the gap: Patients’ experiences and perceptions of goal setting in palliative care

Background: Palliative care aims to support people to live as actively as possible until death. A rehabilitative approach which includes goal setting could be an important way of achieving this. Goal setting is well established in best practice guidelines for palliative care. However little is known about how the process of goal setting actually happens in practice, especially from patients’ points of view. We aimed to investigate patients’ expectations, experience and perceptions of goal setting in one hospice.Methods: We conducted 15 semi-structured interviews with a sample of patients who had been admitted to a Scottish hospice for symptom control. Interviews were digitally recorded, transcribed verbatim and analysed using Framework Analysis.Results: Participants understood and valued goal setting but did not always share their goals with hospice staff. These were often participants’ own personal activity-based goals that they worked on in parallel, but not always in partnership with hospice professionals. Participants were able to adapt their goals as their situation changed.Conclusions: Our findings revealed a gap between the goals that participants identified and worked towards compared with those that participants perceived the professionals focussed on. As a result, opportunities were missed for patients and professionals to work together to achieve goals.This work was funded by Strathcarron Hospice and the University of Stirling.https://doi.org/10.1080/09699260.2019.167213127pubpub

Patient centred goal setting in a hospice setting: A comparative case study of how healthcare practitioners understand and use goal setting in practice

Aim: To investigate healthcare practitioners' understanding and practice of patient centred goal setting in a hospice. Methods: A comparative case study of 10 healthcare practitioners in one hospice. Nonparticipant observations (n=28), semi-structured interviews (n=10) and case-note analysis (n=67) were undertaken. Data were analysed using framework analysis. Results: Participants viewed goal setting as part of routine practice. However, goal setting focused around what was seen as important from the health practitioner's perspective rather than being person centred. Participants' goal setting practice was implicit and opportunities to support patients to pursue goals were missed. Participants emphasised problem solving and alleviating symptoms rather than focusing on patient priorities and establishing patient centred goals. Conclusion: While goal setting is valued, it is practiced in an implicit, practitioner centred and inconsistent manner. An explicit person centred goal setting process may support practitioners consistently help patients to identify their priorities and enhance their quality of life.sch_nur24pub5355pub

A narrative review on analysing and reporting research conducted using Talking Mats®, an inclusive communication tool

BACKGROUND: Talking Mats® is a visual communication tool which can support people to express their views. Talking Mats has been used in research as a more inclusive data collection tool, however, analysing the varied data produced by Talking Mats is challenging, and there is a lack of guidance on how to analyse and report these data. OBJECTIVE: We sought to provide an overview of ways in which Talking Mats data have been analysed and reported. METHODS: We conducted a narrative review of studies that reported using Talking Mats to collect empirical data, to examine how these studies analysed and reported these data. RESULTS: Studies used qualitative analysis techniques, such as: thematic, content, conversation, and framework analysis. Studies also reported clinical and research case studies and observations of non-verbal communication. Quantitative analyses were used less often, and involved transforming qualitative data into quantitative data (e.g., observing symbol placements). Many studies did not describe their methods in sufficient depth. CONCLUSIONS: We developed the Talking Mats Reporting Criteria to support researchers and practitioners to describe their Talking Mats protocols. These Reporting Criteria were developed iteratively and collaboratively between Talking Mats experts and members of the Talking Mats Research Network. Researchers and practitioners should describe their analytical approach in further detail and report the Talking Mats Effectiveness Framework of Functional Communication

Development and feasibility of a Swallowing intervention Package (SiP) for patients receiving radiotherapy treatment for head and neck cancer—the SiP study protocol

BackgroundHead and neck cancer (HNC) is the sixth most common cancer worldwide, and the functional, psychological and social consequences of HNC cancer and its treatment can be severe and chronic. Dysphagia (swallowing problems) affects up to two thirds of patients undergoing combined chemoradiotherapy. Recent reviews suggest that prophylactic swallowing exercises may improve a range of short- and long-term outcomes; however, the importance of psychological and behavioural factors on adherence to swallowing exercises has not been adequately studied. This study aims to develop and test the feasibility of a Swallowing intervention Package (SiP) designed in partnership with patients, speech and language therapists (SLTs) and other members of the head and neck multi-disciplinary team (MDT), for patients undergoing chemoradiotherapy (CRT) or radiotherapy (RT) for head and neck cancer.Methods/designThis feasibility study uses quantitative and qualitative research methods, within a quasi-experimental design, to assess whether patients will tolerate and adhere to the SiP intervention, which aspects of the intervention can be implemented and which cannot, whether treatment fidelity can be achieved across different contexts, whether study processes and outcome measures will be feasible and acceptable and to what extent the intervention is likely to have an impact on swallowing dysfunction and quality of life. Patients are being recruited from five sites in Scotland and England (three interventions and two usual care). The SLT based in the relevant intervention centre teaches the exercise programme and provides supporting materials. A combination of patient-reported outcome measures (PROMs), adherence measures and clinical swallowing assessments are used prior to intervention (baseline), at the end of treatment, 3 and 6 months post-treatment.DiscussionThis collaborative study has taken a unique approach to the development of a patient-centred and evidence-based swallowing intervention. The introduction of an e-SiP app provides an exploration of the use of technology in delivering this intervention. The study provides an opportunity to examine the feasibility of delivering and participating in a supported swallowing intervention across several different NHS sites and will provide the evidence needed to refine intervention and study processes for a future trial

Goal setting in palliative care: A structured review

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.sch_nur22pub4181pub