Search

BackgroundAdvance care planning is considered best practice for children and young people with life-limiting conditions but there is limited evidence how parents’ perceive, understand and engage with the process.AimTo understand parents’ experience of advance care planning for a child or young person with a life-limiting condition.DesignScoping review, theoretically informed by Family Sense of Coherence. Parents’ experience was conceptualised in terms of meaningfulness, comprehensibility and manageability.Data sourcesElectronic databases Medline, CINAHL and PyschINFO were searched for studies published between 1990 and 2021, using MeSH and broad-base terms.Results150 citations were identified and screened; 15 studies were included: qualitative (n=10), survey (n=3) and participatory research (n=2). Parents’ experience of advance care planning was contextualised by their family values and beliefs, needs and goals and the day-to-day impact of caring for their child and family. They valued conversations, which helped them to maximise their child’s quality of life and minimise their suffering. They preferred flexible, rather than definitive decisions about end-of-life care and treatment.ConclusionsAdvance care planning which solely focuses on treatment decisions is at odds with parents’ concerns about the current and future impact of illness on their child and family. Parents want advance care planning for their child to reflect what matters to them as a family. Future longitudinal and comparative studies are needed to understand the influence of advance care planning on parental decision-making over time and how social, cultural and contextual nuances influence parental experience.

INTRODUCTION: Awareness of breast cancer symptoms has made a positive impact on recognition and screening, however there is little research describing how women interpret their bodily changes. This study was conducted to explore how Malaysian women with breast cancer appraise their symptoms and how their interpretation of the symptoms had been shaped by the social norms, knowledge and previous experiences. Materials and Methods: 14 women with breast cancer were recruited using purposeful sampling. The participants took part in in-depth, one-time, face-to-face, and audio-recorded interviews. All the interviews were subsequently transcribed verbatim and analysed using structure and content of a narrative approach. Results: Women interpreted their symptoms based on the physical presentation of the symptoms, previous experiences, and societal norms and beliefs. Some women immediately understood the potential meaning of their breast changes and sought medical opinion, while others waited from one week up to until one year to observe symptoms or normalised them in terms of previous and current experiences. The use of narrative enabled these women to recapitulate particular experiences that had special meaning in order to make sense of their action. Conclusions: The way women interpreted their symptoms reflected their understanding on the significant meaning of the symptoms. Acknowledging this symptom appraisal information may assist healthcare professionals in providing appropriate information that can challenge misconceptions, myths, and negative beliefs about breast cancer to improve breast cancer awareness and early detection among the community.

Background Family support is internationally recognised as integral to palliative care. However, during end of life care discharge planning from hospital, families report a lack of opportunity to discuss their concerns or contribute their knowledge of the ill family member and consequently feel unheard and unsupported. To counter this experience, we co-produced the Family-Focused Support Conversation, a novel research-informed intervention, to guide discussion of family concerns about the meaning, implications and manageability of end of life caregiving following discharge. Objectives To qualitatively evaluate the usability, accessibility and acceptability of the Family-Focused Support Conversation in hospital and factors which promote and inhibit implementation. Design Participatory Learning and Action Research design, guided by Normalization Process Theory, a social implementation theory. Settings Implementation was undertaken by 45 clinical co-researchers, specialist nurses (n=42) and occupational therapists (n=3), working in specialist palliative care teams in twelve hospitals (within seven NHS Trusts) across England, over a six-month period. Methods During implementation clinical co-researchers collected reflective data about intervention delivery (n=110), participated in regular in-depth conversations of implementation with the research team (n=26 meeting records) and in a final evaluation meeting (n=11 meeting records). Data from family members who had received the intervention, comprised brief questionnaires (n=15) and in-depth semi-structured interviews (n=6). Data were qualitatively analysed, informed by Normalization Process Theory and Family Sense of Coherence Theory. Results Clinical co-researchers found the intervention eminently usable and accessible. They reported a shift in family support from informing family members about patient healthcare needs, to family concerns such as how they made sense of the meaning of discharge, and how to provide family-orientated care. Family members found the intervention acceptable, they felt supported and able to make informed decisions about their role in providing end of life care. Implementation was positively influenced by coherence between the intervention and value placed on family care by clinical co-researchers. Once incorporated in their practice intervention delivery took no longer than usual practice and could be divided across consultations and collectively delivered with ward and discharge teams. Conclusions The Family-Focused Support Conversation is usable, accessible and acceptable. It enhances family support by facilitating discussion of family concerns about end of life caregiving and results in family members making informed decisions about their role in end of life care following discharge. Trial registration n/a.

Background: Carers of people with advanced cancer play a significant role in managing pain medication, yet they report insufficient information and support to do so confidently and competently. There is limited research evidence on the best ways for clinicians to help carers with medication management. Aims: To develop a pain medicines management intervention (Cancer Carers Medicines Management) for cancer patients’ carers near the end of life and evaluate feasibility and acceptability to nurses and carers. To test the feasibility of trial research procedures and to inform decisions concerning a full-scale randomised controlled trial. Design: Phase I-II clinical trial. A systematic, evidence-informed participatory method was used to develop CCMM: a nurse-delivered structured conversational process. A two-arm, cluster randomised controlled feasibility trial of Cancer Carers Medicines Management was conducted, with an embedded qualitative study to evaluate participants’ experiences of Cancer Carers Medicines Management and trial procedures. Setting: Community settings in two study sites. Participants: Phase I comprises 57 carers, patients and healthcare professionals and Phase II comprises 12 nurses and 15 carers. Results: A novel intervention was developed. Nurses were recruited and randomised. Carer recruitment to the trial was problematic with fewer than predicted eligible participants, and nurses judged a high proportion unsuitable to recruit into the study. Attrition rates following recruitment were typical for the study population. Cancer Carers Medicines Management was acceptable to carers and nurses who took part, and some benefits were identified. Conclusion: Cancer Carers Medicines Management is a robustly developed medicines management intervention which merits further research to test its effectiveness to improve carers’ management of pain medicines with patients at the end of life. The study highlighted aspects of trial design that need to be considered in future research.

The quality of research, and the resulting quality of evidence available to guide palliative care, is dependent on the ethical decisions underpinning its design, conduct and report. Whilst much has been published debating the ethics of palliative care research, an assessment of the quality and synthesis of the central debates is not available. Such a review is timely to inform research governance. The methodology of this study is based on the principles of systematic reviews. Fifty-seven papers were reviewed following a thorough search, and were critically appraised for their literary quality, the knowledge on which they drew and the research standards they addressed. The debates identified address vulnerability, moral appropriateness, consent, gate-keeping and inclusion and research culture. The quality of debate and the sources of knowledge varied. The debate was rich in quality and knowledge with respect to the protection of the dignity, rights and safety of research participants, but less developed in relation to those of researchers and other staff. There is also little debate about the ethics of reporting of research and the ethics underpinning research leadership. A framework is offered that reconciles the ethical issues raised with potential methodological strategies identified from the review.

Objectives: This paper explicates the nature and extent of the networks of care surrounding patients with cancer palliative care needs. Method: Twenty-four patients with 15 different types/sites of cancer were recruited in one city in England, UK. During one in-depth interview patients identified who was ‘involved in their care’ and any known pathways of communication between them. One hundred of these people (35 doctors, 32 nurses, 17 professions allied to medicine, 8 family members and 8 others) were also interviewed. Maps of people/teams and the connections between them for each patient were then reconstructed using social networking software (PAJEK). Results: The 24 patients identified a total of 619 people or teams (mean 26, median 22, range 9–45 per patient) contributing to their care. Selected care network maps are displayed, illustrating the extent and nature of the care networks supporting palliative care patients. Common members of care networks for patients with palliative care needs are revealed, but their individual and unique nature is also apparent. Conclusions: The possible clinical utility and challenges of mapping care networks are discussed. Exploring the care networks surrounding individual patients can be useful for illuminating the extent and complexity of individual patient's care networks; clarifying who is involved and who they communicate with; providing opportunities to see interaction routes that may otherwise be hidden, revealing potentially missing or weak connections; and highlighting overlaps or gaps in provision.

Objective To explore the work carried out for cancer palliative care patients in understanding and dealing with the often large network of care provision surrounding them. Method Qualitative thematic analysis of interviews with 24 patients (aged 48–85?years) with 15 different types/sites of cancer and palliative care needs. Results The main theme of ‘patient work—their strategies and project management’ is presented. Subthemes included: being organised and keeping records; planning ahead and coordinating care; information gathering; understanding the hierarchy and knowing who the key people are; strategies to remember names and roles; understanding and ‘working the system’. Insights are given into the work carried out on patients’ behalf by family, although it was unclear who would do this work if no family was available. Some of the challenges faced by patients and families are identified. These included limited information; uncertainty when care is transferred between different teams or locations; deciding who to contact and how; and negotiating through gatekeepers. Conclusions The number and variety of people contributing to the care of a cancer palliative care patient can be difficult for patients and family to comprehend. Work is required by patients or family on their behalf to achieve the level of understanding required to become accomplished at navigating the system and project managing their care organisation, and is probably influenced by role expectations and previous experience. Much of this additional, often hidden, workload for patients and family could probably be reduced with clear, timely information provision by health professionals.

The use of reflection in a palliative care programme: a quantitative study of the development of reflective skills over an academic year Reflection has gained a reputation for encouraging the integration between theory and practice within professional education. However, this reputation is based on an evidence base that mostly consists of theoretical debate. The aim of this study was to test our experience that the ability to reflect is developmental and that some reflective skills are harder to achieve than others. The research was undertaken by assessing the degree to which registered nurses achieved reflective criteria within assignments submitted for a variety of palliative care undergraduate modules. A total of 160 assignments were analysed using a marking grid constructed from a literature review and the results were compared between students and across academic terms. The results suggest that students are able to describe their practice but find it harder to analyse knowledge, the context of care and to action plan. Nevertheless, reflective abilities developed over time with significant developments made between each term. However, the development of skills indicative of critical reflection was less evident and confined to the ability to raise implications for future learning. The lack of multivariate analysis limits the study. However, the findings build on previous research and prompt questions for future work, particularly with respect to the process of reflection and how this can be supported in order to encourage the development of critical reflective skills.

Helping patients manage pain has many ethical implications, as Susan Duke explains.

This study explores the changing characteristics of patients admitted to Sir Michael Sobell House, Oxford, between 1978-89. These dates represent the period between the first available records and the first computerized records. Analysis is between these dates and has been undertaken to enable future comparison between the early life of the unit with more recent developments. Using secondary sources the following areas were compared statistically: information related to general characteristics such as sex and age; information related to referral such as the number of referrals; diagnosis on referral and reasons for referral; information related to problems presented and place of death. Significant findings included an increase in referrals and patient survival; an increase in patients dying at home; a decrease in symptoms presented on referral and fewer referrals for terminal care; and an increase in referral for rehabilitation, assessment and support. Reasons for these changes are suggested.

Introduction A recent national survey of carers found that only half of family carers providing end of life care received the support they needed and this support was less likely to be provided in hospital.1 Similarly, a study of discharge in older adults found that most family caregivers are not involved in discharge decisions.2 Aims This study aims to understand and support family in the work they do to facilitate end of life discharge. The study objectives are to: Design and assess the usability of the intervention for family members supporting a person being transferred from hospital to their preferred place for end of life care. Implement the intervention in hospital practice to reveal the factors that promote and inhibit implementation of the intervention; and develop toolkits to facilitate transfer of the intervention between settings. Methods The intervention integrates tested support components (reduction of uncertainty, information provision and coaching) within the framework of Family Sense of Cohesion Theory, to promote family resilience and, thereby, facilitate effective 24/7 care. The intervention has been clinically modelled with practitioners as conversational prompts, each addressing an intervention component (meaningfulness, uncertainty, comprehensibility and manageability). Using Participatory Learning and Action (PLA) methodology the study will be conducted in five developmental cycles. Results The intervention will be piloted at three clinical sites from July 2016. Following this, there will be further roll out to 7 additional sites across England (through to September 2017). References National Council for Palliative Care.Who Cares? Support for carers of people approaching the end of life. London: The National Council for Palliative Care; 2013 Waring J, Marshall F, Bishop S, et al. An ethnographic study of knowledge sharing across the boundaries between care processes, services and organisations: the contribution to 9safe9 hospital discharge. Health Services and Delivery Research 2014;2(29)

Background Cancer accounts for 1 in 4 deaths in the UK. A majority of people with advanced cancer will experience pain and family carers play an important role in managing pain medication at home. There is evidence carers need support with this, yet no research in the UK has developed and tested theory-driven interventions to help them manage pain medicines. We are conducting a Phase I-II feasibility study (as defined by the Medical Research Council guidelines for developing a complex intervention) to develop a new intervention: Cancer Carer Medicines Management (CCMM). Aim To summarise the development of CCMM, outlining the process of intervention development. Method A staged multi-method approach was used to obtain current evidence to inform CCMM's development: a systematic literature review of interventions for carer end of life medicines management; a scoping exercise concerning practice and theoretical contexts; interviews and user involvement group consultations with patients, carers, and health professionals with palliative care experience. This information informed two workshops which used participatory action research processes to design and develop an intervention which will be further refined through a consultative review process. Results To date we have found that this staged approach is appropriate and successful in enabling an evidence based intervention to be designed collaboratively. This also provides a means by which the clinical applicability of the intervention can be refined as it develops. Conclusions Refining this intervention as it develops will ensure that it reaches the feasibility trial stage with a robust grounding in carer experience, clinical practice and research evidence. In turn, the intervention will have the potential to enhance the practice of nurses in the community to meet carers' needs in pain medication management.

Introduction Seventy-onepercent of people with cancer experience pain at the end of life (Teunissen et al 2007). It is well established that family carers play a significant role in managing pain medication. Our scoping exercise of international literature repeatedly found that family carers lack information and confidence, with some holding beliefs that pain cannot be controlled and concerns about medication becoming addictive. Carers9 roles have been neglected, with few interventions concerning pain management focusing specifically on carers, and a particular lack of UK research. Aims and Methods A Phase I-II feasibility study, funded by Dimbleby Marie Curie, is being conducted (2013–2015) to develop a new Cancer Carer Medicines Management intervention and to test its feasibility, acceptability and efficacy to improve carers9 knowledge, beliefs, skills and self-efficacy for pain medicines management, decrease carer strain and improve mood state. This will be achieved through: a rapid appraisal of research on interventions for carer management of end of life pain medicines; development and refinement of the intervention through user collaboration; and a feasibility trial involving nurses and carers in two sites, to inform a follow-on randomised control trial. Results Phase I will produce an educational intervention for delivery by palliative care nurses with family carers. Phase II will evaluate intervention impact on carer outcomes using validated questionnaires measuring carer pain medication knowledge, beliefs and skills; carer strain, self-efficacy and mood state. Secondary outcomes from validated questionnaires and interviews will include perceptions of patient pain, burden of the intervention, and factors inhibiting or facilitating intervention use.

Background Addressing the care needs of people with advanced cancer is often complex, requiring communication between different professional and lay care providers, across different geographical and professional boundaries. Achieving the right balance of support and autonomy can be difficult, needing to be tailored to each patient. Aim Identify and quantify the number of people involved in the care of people with cancer and palliative care needs, and explore the network of communication pathways between these different people. Method Case study methodology was employed, each case involving one patient and the (patient-identified) people involved in their care (PIPCs) within the past 6 months. During indepth interviews with patients (n=24; mean length 65 min) and PIPCs (n=100; mean length 30 min), respondents identified and described the network of communication pathways surrounding the patient9s care. A map of each patient9s care network was drawn during each interview, and was subsequently redrawn using social networking software. Results Patients (15 female, 9 male; age range: 48–85) had a range of primary tumours (mean time since diagnosis: 9.5 months; range: 0.5–61 months). All were described as receiving or needing specialist or generalist palliative care at the time of recruitment (through General Practice (n=5); Hospital Specialist Palliative Care Team (n=8); Specialist Palliative Care Unit (n=11)). Patients identified 9–45 (mean:26) different people/teams as being involved in their care; an average of six PIPCs per case (range:0–11) were subsequently interviewed about their contribution to the communication surrounding this patient. Conclusion Sample cases and selected communication maps are presented to illustrate the range of possibilities in numbers of PIPCs involved and the complexity of, and patient and PIPC satisfaction with, some patients9 communication networks. The methodological utility of the mapping technique, and its potential contribution to achieving the right balance of involvement in palliative care, are considered.

Background The authors have very limited knowledge regarding how people with cancer and palliative care needs understand and contribute to the often complex networks and pathways of communication between the different people, teams and locations involved in their care. Aim Explore how people with cancer and palliative care needs understand and contribute to the communication surrounding their care. Method During indepth interviews (n=24; mean length 65 min), patients were asked to discuss the communication that surrounds their care. Framework analysis of the transcribed interviews considered patients9 understanding of the communication surrounding them, and any contributions they make to facilitating or managing that communication. Results Patients (15 female, 9 male; age range: 48–85) had a wide range of primary tumours (mean time since diagnosis: 9.5 months; range: 0.5–61 months). All were described as receiving or needing specialist or generalist palliative care at the time of recruitment (through General Practice (n=5); Hospital Specialist Palliative Care Team (n=8); Specialist Palliative Care Unit (n=11)). Analysis reveals variation in the extent of patients9 understanding of, and contribution to, the management of the communication surrounding their care, including ‘active involvement’, ‘understanding’, ‘storing information’, ‘opportunism’ and ‘delegation’. Some patients are less involved, with approaches including ‘cooperation’ and ‘reluctance to communicate’. Some patients who attempt ‘active involvement’ encounter ‘barriers’ to achieving this. Conclusion It is concluded that patients demonstrate a variety of ways of dealing with, understanding, and contributing to the communication surrounding their care. Example cases illustrate the range of approaches some individuals appear to use, compared with those that appear available to other patients. These are explored in terms of factors such as patient disposition, ‘insider knowledge’, uncertainty in less-common cancer, ‘behind the scenes’ communication, and the complexity of some care packages. These findings present implications for facilitating supported self-management while recognising/minimising patient burden.