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Domestic abuse is a worldwide public health and social issue which impacts the health and wellbeing of those experiencing abuse and their families. People living with a life-limiting illness are at increased risk of domestic abuse because they are often frail, isolated, and dependent on others. Little is known about domestic abuse and the coexistence of life-limiting illness and existing support for those experiencing or at risk of abuse. A scoping review was conducted to identify factors that shape and characterise experiences of adults with a life-limiting illness affected by domestic abuse and the health and social care practitioners and other organisations that support them. The Joanna Briggs Institute (JBI) methodology and checklist for Preferred Reporting Items for Systematic Reviews and Meta Analyses-Extension for Scoping Reviews (PRISMA-ScR) were applied. Five databases were systematically searched from 2000 to 2021: MEDLINE; CINAHL; PsycINFO; Social Sciences Citation Index (Web of Science); and ProQuest Dissertations and Global. Twenty-one papers met the inclusion criteria. Most studies were conducted in North America, with female participants living with cancer, and conducted in health and community settings. There were no studies involving third sector organisations. A range of abusive behaviours was reported resulting in missed medical appointments, delays in screening leading to late diagnosis, and palliative rather than curable treatment. Abuse also impacted on the physical, emotional, and psychological wellbeing of the person experiencing the abuse, which increased stress levels and could have a detrimental effect on their health. Identifying domestic abuse within the context of life-limiting illness was reported to be challenging for health and social care professionals, as was responding to and managing a disclosure. Further research is needed to address existing knowledge in order to inform policy and practice to identify and manage domestic abuse where it coexists with life-limiting illness.

Background: the diagnostic pathway is critical for early breast cancer detection and prognosis improvement. Countries such as the United Kingdom, particularly England, have implemented faster diagnosis standards to ensure that patients receive a definitive diagnosis of cancer or are ruled out within 28 days of referral. However, there is a severe shortage of data on the experiences of breast cancer patients in Malaysia during the diagnostic interval.Aim: this study aimed to explore what happened to the women during the diagnostic phase prior to confirmation of breast cancer.Methodology: purposive sampling was applied, and 14 participants were recruited from two government hospitals. The participants took part in in-depth, face-to-face, one-time, and audio-recorded interviews. All the interviews were subsequently transcribed verbatim and analyzed using narrative analysis.Results: the diagnostic interval for the women in this study was 1–3 months from first medical contact till diagnosis. Four themes were identified during the analysis for the diagnostic interval: 1) Women who are suspected of having breast cancer; 2) Women who experience false reassurance; 3) Woman who experience delayed referral; and 4) Women who experience inconclusive investigation results.Conclusions: this study indicates that early warning signs of breast cancer may prompt doctors to take immediate action. However, unexpected delays may occur as a result of staffing and system issues in the healthcare system. Healthcare professionals should aggressively refer patients with typical symptoms and actively follow-up with patients who present with atypical symptoms in the community. Continuing education for healthcare professionals is necessary to improve diagnostic and referral procedures.

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: Breast cancer is a significant health problem that affects patients and their family members. Family members are often key to supporting the patient. However, there is an inadequate understanding of the role of female breast cancer patients’ family members in Malaysia. This study aimed to explore the roles of family members of female breast cancer patients from symptom appraisal until the patient treatment commences.Methods: Snowball sampling was applied and 14 participants were recruited through the nomination of the female breast cancer patients. The participants took part in in-depth, face-to-face, and audio-recorded one-time interviews. All of the interviews were subsequently transcribed verbatim and analysed using narrative analysis.Results: Five themes were identified with regard to the roles of family members: 1) confirming breast changes; 2) managing personal emotions; 3) seeking the information; 4) seeking alternative forms of treatment; and 5) advocating for conventional treatment.Conclusion: This study discovered that family members play an important role in the journey of women with breast cancer from the time an abnormality is discovered to the time the patient receives treatment. During this time, many of them suppressed their emotions in order to focus on the women suffering from breast cancer. Healthcare professionals working with breast cancer should recognise and support the key role of family members in supporting women to get treatment. It is important to take a proactive approach in recognising the early signs of stress for family members and, when appropriate, offering them additional sources of support.

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.

PurposeThe purpose of this paper is to explore what happens when changes to clinical practice are proposed and introduced in healthcare organisations. The authors use the implementation of Treatment Escalation Plans to explore the dynamics shaping the translational journey of a complex intervention from research into the everyday context of real-world healthcare settings.Design/methodology/approachA qualitative instrumental collective case study design was used. Data were gathered using qualitative interviews (n = 36) and observations (n = 46) in three English acute hospital trusts. Normalisation process theory provided the theoretical lens and informed data collection and analysis.FindingsWhile each organisation faced the same translational problem, there was variation between settings regarding adoption and implementation. Successful change was dependent on participants' ability to manage and shape contexts and the work this involved was reliant on individual capacity to create a new, receptive context for change. Managing contexts to facilitate the move from research into clinical practice was a complex interactive and iterative process.Practical implicationsThe paper advocates a move away from contextual factors influencing change and adoption, to contextual patterns and processes that accommodate different elements of whole systems and the work required to manage and shape them.Originality/valueThe paper addresses important and timely issues of change in healthcare, particularly for new regulatory and service-oriented processes and practices. Insights and explanations of variations in implementation are revealed which could contribute to conceptual generalisation of context and implementation.

Treatment Escalation Plans (TEPs) are paper and electronic components of patients' clinical record that are intended to encourage patients and caregivers to contribute in advance to decisions about treatment escalation and de-escalation at times of loss of capacity. There is now a voluminous literature on patient decision-making, but in this qualitative study of British clinicians preparing to implement a new TEP, we focus on the ways that they understood it as much more than a device to promote patient awareness of the potential for pathophysiological deterioration and to elicit their preferences about care. Working through the lens of Callon's notion of agencements, and elements of May and Finch's Normalisation Process Theory, we show how clinicians saw the TEP as an organising device that enabled translation work to elicit individual preferences and so mitigate risks associated with decision-making under stress; and transportation work to make possible procedures that would transport agreed patterns of collective action around organisations and across their boundaries and to mitigate risks that resulted from relational and informational fragmentation. The TEP promoted these shifts by making possible the restructuring of negotiated obligations between patients, caregivers, and professionals, and by restructuring practice governance through promoting rules and resources that would form expectations of professional behaviour and organisational activity., Highlights • EoLC decision-making tools frame interaction processes in relational space. • Decision-making tools transport patient preferences across organisational space. • Agencement theory and Normalisation Process Theory work well together.

Background Many people move in and out of hospital in the last few weeks of life. These care transitions can be distressing for family members because they signify the deterioration and impending death of their ill relative and forthcoming family bereavement. Whilst there is evidence about psycho-social support for family members providing end of life care at home, there is limited evidence about how this can be provided in acute hospitals during care transitions. Consequently, family members report a lack of support from hospital-based healthcare professionals. Methods The aim of the study was to implement research evidence for family support at the end of life into acute hospital care. Informed by Participatory Learning and Action Research and Normalization Process Theory (NPT) we co-designed a context-specific intervention, the Family-Focused Support Conversation, from a detailed review of research evidence. We undertook a pilot implementation in three acute hospital Trusts to assess the potential for the intervention to be used in clinical practice. Pilot implementation was undertaken during a three-month period by seven clinical co-researchers - nurses and occupational therapists in hospital specialist palliative care services. Implementation was evaluated by data comprised of reflective records of intervention delivery (n=22), in-depth records of telephone implementation support meetings, between research team members and co-researchers (n=3) and in-depth evaluation meetings (n=2). Data were qualitatively analysed using an NPT framework designed for intervention evaluation. Results Clinical co-researchers readily incorporated the Family-Focused Support Conversation into their everyday work. The key disruption to practice was a change in interactional practice, from being patient-focused, providing information about patient needs, to family-focused, identifying family concerns and facilitating family-focused solutions. Co-researchers reported an increase in family members’ involvement in discharge decisions and end of life care planning. Conclusion The Family-Focused Support Conversation is a novel, evidenced-based and context specific intervention. Pilot implementation demonstrated the potential for the intervention to be used in acute hospitals to support family members during end of life care transitions. This informed a larger scale implementation study, reported in a respective paper.

Palliative care improves the quality of life of patients and their families with life-threatening illness, through the prevention and relief of suffering by early assessment and treatment of pain and other problems. It can be provided as part of a more general role, or by specialist palliative care staff who have particular expertise. Referrals for specialist care will often be for pain or symptom management, family support, or spiritual support. End-of-life care aims to enable the person to die with dignity and to manage pain and distressing symptoms. Recognizing the end of life helps practitioners to meet the patient’s needs and prepares their family for the reality of death. Good practice in end-of-life care focuses on effective communication and provision of information, ensuring that patients and their families are fully involved in decision-making and respecting the personal wishes, preferred care setting, and current and anticipated care needs of the patient. Bereavement is frequently encountered in the families of patients prior to, and after, death. Common features of grief can include pining for, and being preoccupied with, the lost loved one, feelings of shock, disbelief, sadness, anger, and anxiety. Complicated grief involves an extended period of grieving, beyond 6 months, with intense feelings and disruption of usual life and activities. The majority of bereaved people do not require specialist support, so screening and assessment identify those at risk or in need of specialist interventions.

At the end of life, it is important to review all medications, and those required may be continued via a syringe driver if the person is unable to take them orally. The anticipation of needs and forward planning are important, having medications and resources available, ensuring all service providers are aware of the patient 24 hours a day and families have relevant contact numbers. Effective communication with the patient and family is essential, to manage expectations and ensure they understand what is being done and why. Care should always be planned in accordance with local and national guidelines in best practice in palliative and end-of-life care. Anticipatory prescribing of as-required medications for symptoms can help avoid distress. Respiratory secretions (death rattle) can cause noisy, rattling breathing that occurs when the dying person is unconscious and close to death and is unable to cough or clear secretions. This can be distressing to family members, and they will need support and information about the condition. Nursing care involves repositioning to aid drainage of secretions, frequent mouth care, and review of fluid input, and drugs may be used to reduce secretions. Terminal agitation is a state of agitation and distress at the end of life. This is a distressing experience, and it is most important to communicate effectively with the patient and family, maintaining dignity and privacy and providing a comforting professional presence. Sedation should be used with care and discretion, taking the wishes of the patient and family into account.

ObjectivesTo identify the factors that promote and inhibit the implementation of interventions that improve communication and decision-making directed at goals of care in the event of acute clinical deterioration.Design and methodsA scoping review was undertaken based on the methodological framework of Arksey and O’Malley for conducting this type of review. Searches were carried out in Medline and Cumulative Index to Nursing and Allied Health Literature (CINAHL) to identify peer-reviewed papers and in Google to identify grey literature. Searches were limited to those published in the English language from 2000 onwards. Inclusion and exclusion criteria were applied, and only papers that had a specific focus on implementation in practice were selected. Data extracted were treated as qualitative and subjected to directed content analysis. A theory-informed coding framework using Normalisation Process Theory (NPT) was applied to characterise and explain implementation processes.ResultsSearches identified 2619 citations, 43 of which met the inclusion criteria. Analysis generated six themes fundamental to successful implementation of goals of care interventions: (1) input into development; (2) key clinical proponents; (3) training and education; (4) intervention workability and functionality; (5) setting and context; and (6) perceived value and appraisal.ConclusionsA broad and diverse literature focusing on implementation of goals of care interventions was identified. Our review recognised these interventions as both complex and contentious in nature, making their incorporation into routine clinical practice dependent on a number of factors. Implementing such interventions presents challenges at individual, organisational and systems levels, which make them difficult to introduce and embed. We have identified a series of factors that influence successful implementation and our analysis has distilled key learning points, conceptualised as a set of propositions, we consider relevant to implementing other complex and contentious interventions.

Purpose The partners of cancer survivors may experience distress, anxiety, fear and uncertainty whilst also caring for and supporting a partner who is ill. As they concentrate on the cancer survivor's needs, their own needs may remain unaddressed. Primary care staff may be well placed to support partners as they are generally accessible and may have a better knowledge of the patient's background and family relationships. However, their current involvement in the cancer survivor's and partner's cancer-related care is unclear. This study aimed to describe the experience of the partners of cancer survivors in dealing with cancer-related issues in the first 3 years post-diagnosis, their use of primary care services in relation to these issues and the barriers in doing so and their views on the role that primary care could potentially play in supporting them as carers during this period. Methods Semi-structured interviews with 22 partners of cancer survivors diagnosed within the last 3 years and recruited through six GP practices in the Thames Valley Region of the UK were analysed using the 'framework' approach to thematic analysis. Results Three issues were identified as of particular concern to partners: providing practical support, providing emotional support and managing their own health and well-being. Few partners had sought or received support from primary care specifically for cancer-related issues, indicating confidentiality, lack of knowledge of family relationships and the greater need of the cancer survivor as barriers. Most partners would welcome a proactive approach from primary care and felt that this would provide an opportunity to discuss issues they were concerned about. Conclusions Needs and concerns of the partners of cancer survivors in caring for patients are often not addressed. There is a scope for primary care to elicit these needs and provide greater support. Changes to clinical practice in primary care could lead to greater involvement of and to better outcomes for cancer survivors and their partners. A proactive approach to patients and their partners or other close family members at the time of diagnosis through an offer of support and the inclusion in a designated review appointment at the end of initial treatment would be useful. © Springer-Verlag 2012.

Background The Quality and Outcomes Framework (QOF) provides an incentive for practices to establish a cancer register and conduct a review with cancer patients within 6 months of diagnosis, but implementation is unknown. Aim To describe: (1) implementation of the QOF cancer care review; (2) patients' experiences of primary care over the first 3 years following a cancer diagnosis; (3) patients' views on optimal care; and (4) the views of primary care professionals regarding their cancer care. Design of study Qualitative study using thematic analysis and a framework approach. Setting Six general practices in the Thames Valley area. Method Semi-structured interviews with cancer patients and focus groups with primary care teams. Results Thirty-eight adults with 12 different cancer types were interviewed. Seventy-one primary care team members took part in focus groups. Most cancer care reviews are conducted opportunistically. Thirty-five patients had had a review; only two could recall this. Patients saw acknowledgement of their diagnosis and provision of general support as important and not always adequately provided. An active approach and specific review appointment would legitimise the raising of concerns. Primary care teams considered cancer care to be part of their role. GPs emphasised the importance of being able to respond to individual patients' needs and closer links with secondary care to facilitate a more involved role. Conclusion Patients and primary care teams believe primary care has an important role to play in cancer care. Cancer care reviews in their current format are not helpful, with considerable scope for improving practice in this area. An invitation to attend a specific appointment at the end of active treatment may aid transition from secondary care and improve satisfaction with follow-up in primary care.

AimTo describe how decision making inter-relates with the sequence of events in individuals who die during admission and identify situations where formal treatment escalation plans (TEPs) may have utility.Design and methodsA retrospective case note review using stratified sampling. Two data analysis methods were applied concurrently: directed content analysis and care management process mapping via annotated timelines for each case. Analysis was followed by expert clinician review (n=7), contributing to data interpretation.Sample45 cases, age range 38–96 years, 23 females and 22 males. Length of admission ranged from ResultsProcess mapping led to a typology of care management, encompassing four trajectories: early de-escalation due to catastrophic event; treatment with curative intent throughout; treatment with curative intent until significant point; and early treatment limits set. Directed content analysis revealed a number of contextual issues influencing decision making. Three categories were identified: multiple clinician involvement, family involvement and lack of planning clarity; all framed by clinical complexity and uncertainty.ConclusionsThe review highlighted the complex care management and related decision-making processes for individuals who face acute deterioration. These processes involved multiple clinicians, from numerous specialities, often within hierarchical teams. The review identified the need for visible and clear management plans, in spite of the frame of clinical uncertainty. Formal TEPs can be used to convey such a set of plans. Opportunities need to be created for patients and their families to request TEPs, in consultation with the clinicians who know them best, outside of the traumatic circumstances of acute deterioration.

Context: Advance Care Plans (ACPs) enable patients to discuss and negotiate their preferences for the future including treatment options at the end of life. Their implementation poses significant challenges.Objective: to investigate barriers and facilitators to the implementation of ACPs, focusing on their workability and integration in clinical practice.Design: an explanatory systematic review of qualitative implementation studies.Data sources: empirical studies that reported interventions designed to support ACP in healthcare. Web of Knowledge, Ovid MEDLINE, CINAHL, PsycINFO, British Nursing Index and PubMed databases were searched.Methods: direct content analysis, using Normalization Process Theory, to identify and characterise relevant components of implementation processes.Results: 13 papers identified from 166 abstracts were included in the review. Key factors facilitating implementation were: specially prepared staff utilizing a structured approach to interactions around ACPs. Barriers to implementation were competing demands of other work, the emotional and interactional nature of patient-professional interactions around ACPs, problems in sharing decisions and preferences within and between healthcare organizations.Conclusions: this review demonstrates that doing more of the things that facilitate delivery of ACPs will not reduce the effects of those things that undermine them. Structured tools are only likely to be partially effective and the creation of a specialist cadre of ACP facilitators is unlikely to be a sustainable solution. The findings underscore both the challenge and need to find ways to routinely incorporate ACPs in clinical settings where multiple and competing demands impact on practice. Interventions most likely to meet with success are those that make elements of Advance Care Planning workable within complex and time pressured clinical workflows

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)

Introduction and aims The role of primary care in the provision of cancer care is poorly defined. Practices in are offered a financial incentive to conduct a review with new patients within 6 months of diagnosis, but the extent to which these reviews occur and their scope and perceived usefulness is unknown. The purpose of this study was to explore the role of primary care in caring for and supporting cancer patients and their families. Method Semi-structured interviews were conducted with 38 patients, diagnosed within the last 3 years. Patients were stratified by time since diagnosis, and a maximum variation sampling strategy was employed to achieve heterogeneity in terms of cancer type and socio-demographic variables. We interviewed 19 males and 19 females, with a range of 14 different cancers. Patients were invited to ask their partner/close relative to participate – 24 family members were interviewed. Results Although generally satisfied with their GP practice, most patients were unaware of having had a review or any specific discussion of their cancer-related care, despite records indicating the contrary. Most patients and family members would have welcomed pro-active involvement from their GP practice and felt that a designated review appointment would provide a good opportunity to raise any concerns. Conclusions Although patients and family members see an important role for primary care in cancer follow-up care this is not universally being delivered at present and there is real scope for improving practice in this area.