Coproduction of a theory-based digital resource for unpaid carers (the care companion) : mixed-methods study

Background: Family and other unpaid carers are crucial to supporting the growing population of older people that are living outside residential care with frailty and comorbidities. The burden associated with caring affects carers’ well-being, thus limiting the sustainability of such care. There is a need for accessible, flexible, and responsive interventions that promote carers’ coping and resilience, and hence support maintenance of the health, well-being, and independence of the cared-for person. Objective: This study aimed to coproduce a digital program for carers to promote resilience and coping through supporting effective use of information and other Web-based resources. Its overlapping stages comprised the following: understanding the ways in which Web-based interventions may address challenges faced by carers, identifying target behaviors for the intervention, identifying intervention components, and developing the intervention prototype. Methods: The study was informed by person-based theories of coproduction and involved substantial patient and public involvement. It drew on the Behavior Change Wheel framework to support a systematic focus on behavioral issues relevant to caring. It comprised scoping literature reviews, interviews, and focus groups with carers and organizational stakeholders, and an agile, lean approach to information technology development. Qualitative data were analyzed using a thematic approach. Results: Four behavioral challenges were identified: burden of care, lack of knowledge, self-efficacy, and lack of time. Local health and social care services for carers were only being accessed by a minority of carers. Carers appreciated the potential value of Web-based resources but described difficulty identifying reliable information at times of need. Key aspects of behavior change relevant to addressing these challenges were education (increasing knowledge and understanding), enablement (increasing means and reducing barriers for undertaking caring roles), and persuasion (changing beliefs and encouraging action toward active use of the intervention). In collaboration with carers, this was used to define requirements for the program. A resources library was created to link to websites, Web-based guidance, videos, and other material that addressed condition-specific and generic information. Each resource was classified according to a taxonomy itemizing over 30 different subcategories of need under the headings Care Needs (of the cared-for person), General Information and Advice, and Sustaining the Carer. In addition, features such as a journal and mood monitor were incorporated to address other enablement challenges. The need for proactive, personalized prompts emerged; the program regularly prompts the carer to revisit and update their profile, which, together with their previous use of the intervention, drives notifications about resources and actions that may be of value. Conclusions: The person-based approach allowed an in-depth understanding of the biopsychosocial context of caring to inform the production of an engaging, relevant, applicable, and feasible Web-based intervention. User acceptance and feasibility testing is currently underway

Men don't talk about their health, but will they CHAT? The potential of online holistic needs assessment in prostate cancer

Men don't talk about their health is a familiar trope. Evidence suggests that in the United States (US) and in the United Kingdom (UK) this is indeed the case. A survey of five hundred men in the US over the age of eighteen reported only 7% discussing their health with their peers [1]. Only 42% of men surveyed were prepared to consult a health care professional over a worrying symptom

Exploring the perceived usefulness and ease of use of a personalized web-based resource (care companion) to support informal caring : qualitative descriptive study

Informal carers play an increasingly vital role in supporting the older population and the sustainability of health care systems. Care Companion is a theory-based and coproduced Web-based intervention to help support informal carers' resilience. It aims to provide personalized access to information and resources that are responsive to individuals' caring needs and responsibilities and thereby reduce the burdens associated with caregiving roles. Following the development of a prototype, it was necessary to undertake user acceptability testing to assess its suitability for wider implementation. This study aimed to undertake user acceptance testing to investigate the perceived usefulness and ease of use of Care Companion. The key objectives were to (1) explore how potential and actual users perceived its usefulness, (2) explore the barriers and facilitators to its uptake and use and (3) gather suggestions to inform plans for an area-wide implementation. We conducted user acceptance testing underpinned by principles of rapid appraisal using a qualitative descriptive approach. Focus groups, observations, and semistructured interviews were used in two phases of data collection. Participants were adult carers who were recruited through local support groups. Within the first phase, think-aloud interviews and observations were undertaken while the carers familiarized themselves with and navigated through the platform. In the second phase, focus group discussions were undertaken. Interested participants were then invited to trial Care Companion for up to 4 weeks and were followed up through semistructured telephone interviews exploring their experiences of using the platform. Thematic analysis was applied to the data, and a coding framework was developed iteratively with each phase of the study, informing subsequent phases of data collection and analysis. Overall, Care Companion was perceived to be a useful tool to support caregiving activities. The key themes were related to its appearance and ease of use, the profile setup and log-in process, concerns related to the safety and confidentiality of personal information, potential barriers to use and uptake and suggestions for overcoming them, and suggestions for improving Care Companion. More specifically, these related to the need for personalized resources aimed specifically at the carers (instead of care recipients), the benefits of incorporating a Web-based journal, the importance of providing transparency about security and data usage, minimizing barriers to initial registration, offering demonstrations to support uptake by people with low technological literacy, and the need to develop a culturally sensitive approach. The findings identified ways of improving the ease of use and usefulness of Care Companion and demonstrated the importance of undertaking detailed user acceptance testing when developing an intervention for a diverse population, such as informal carers of older people. These findings have informed the further refinement of Care Companion and the strategy for its full implementation. [Abstract copyright: ©Amadea Turk, Emma Fairclough, Gillian Grason Smith, Benjamin Lond, Veronica Nanton, Jeremy Dale. Originally published in JMIR Aging (http://aging.jmir.org), 20.08.2019.

Receiving end of life care at home: experiences of the bereaved carers of cancer patients cared for by health care assistants

First paragraph: Many terminally ill cancer patients and their families prefer for death to occur at home rather than in an institution where the majority of care falls to the patient’s family and friends. As death approaches caring can become an increasing burden for the patient’s informal carers. This issue has long been recognized by health care professionals and also in current policy for end of life care, with the End of Life Care Strategy for England (DH, 2008) highlighting the need for community services to enable home death by supporting both patient and their family carers. Basic nursing, social and respite home care has frequently been provided by basically trained, unqualified nursing staff, including auxiliary nurses and health care assistants (HCA). Whilst increasing research has been undertaken into the needs of family carers (Stajduhar et al, 2010; Funk et al 2010), relatively little has focused on the care HCAs deliver (Herber & Johnston 2012) and very few studies have explored the experience of bereaved family carers of patients who have received such services

Promoting integrated care in prostate cancer through online prostate cancer-specific holistic needs assessment : a feasibility study in primary care

Purpose This study assessed the feasibility of implementing a novel model of integrated prostate cancer care involving an online prostate cancer-specific holistic needs assessment (sHNA) and shared digital communication between patients and their healthcare professionals (HCPs). The sHNA produces a semi-automated care plan that is finalised in consultation between the patient and their practice nurse. Methods Men living with and beyond prostate cancer were invited to participate in a 9-month non-randomised cluster controlled feasibility study. The intervention group was asked to complete the sHNA on three occasions. Data were collected using Patient Reported Outcome Measures (PROMs) at baseline, 10 and 24 weeks, and 9 months. Outcomes included recruitment, retention, acceptability, and engagement with the sHNA and PROMs. Results Fourteen general practices (8 intervention and 6 control), and 41 men (29 intervention and 12 control) participated. Initial patient engagement with the sHNA was high, with all but one receiving practice nurse-led follow-up and an individualised care plan. The sHNA proved useful in identifying ‘red flag’ symptoms, and helping practice nurses decide when to seek further medical care for the patients. There was a high level of acceptability for patients and HCPs. However, integration of care did not occur as intended because of problems linking hospital and general practice IT systems. Conclusion While the study demonstrated the feasibility of implementing the sHNA, it did not meet the a priori progression criteria; as such, undertaking a definitive randomised controlled trial is not appropriate until the identified methodological and technical issues have been addressed

A web-based prostate cancer–specific holistic needs assessment (CHAT-P) : multimethod study from concept to clinical practice

Background: Men with prostate cancer experience immediate and long-term consequences of the disease and its treatment. They require both long-term monitoring for recurrence or progression and follow-up to identify and help manage psychosocial and physical impacts. Holistic Needs Assessment aims to ensure patient-centered continuing cancer care. However, paper-based generic tools have had limited uptake within cancer services, and there is little evidence of their impact. With the expansion of remote methods of care delivery and to enhance the value of generic tools, we developed a web-based Composite Holistic Needs Assessment Adaptive Tool-Prostate (CHAT-P) specifically for prostate cancer. Objective: This paper described the context, conceptual underpinning, and approach to design that informed the development of CHAT-P, starting from the initial concept to readiness for deployment. Through this narrative, we sought to contribute to the expanding body of knowledge regarding the coproduction process of innovative digital systems with potential for enhanced cancer care delivery. Methods: The development of CHAT-P was guided by the principles of coproduction. Men with prostate cancer and health care professionals contributed to each stage of the process. Testing was conducted iteratively over a 5-year period. An initial rapid review of patient-reported outcome measures identified candidate items for inclusion. These items were categorized and allocated to overarching domains. After the first round of user testing, further items were added, improvements were made to the adaptive branching system, and response categories were refined. A functioning version of CHAT-P was tested with 16 patients recruited from 3 outpatient clinics, with interviewers adopting the think-aloud technique. Interview transcripts were analyzed using a framework approach. Interviews and informal discussions with health care professionals informed the development of a linked care plan and clinician-facing platform, which were incorporated into a separate feasibility study of digitally enhanced integrated cancer care. Results: The findings from the interview study demonstrated the usability, acceptability, and potential value of CHAT-P. Men recognized the benefits of a personalized approach and the importance of a holistic understanding of their needs. Preparation for the consultation by the completion of CHAT-P was also recognized as empowering. The possible limitations identified were related to the importance of care teams responding to the issues selected in the assessment. The subsequent feasibility study highlighted the need for attention to men’s psychological concerns and demonstrated the ability of CHAT-P to capture red flag symptoms requiring urgent investigation. Conclusions: CHAT-P offers an innovative means by which men can communicate their concerns to their health care teams before a physical or remote consultation. There is now a need for a full evaluation of the implementation process and outcomes where CHAT-P is introduced into the clinical pathway. There is also scope for adapting the CHAT-P model to other cancers

The real-world problem of care coordination: a longitudinal qualitative study with patients living with advanced progressive illness and their unpaid caregivers.

OBJECTIVES: To develop a model of care coordination for patients living with advanced progressive illness and their unpaid caregivers, and to understand their perspective regarding care coordination. DESIGN: A prospective longitudinal, multi-perspective qualitative study involving a case-study approach. METHODS: Serial in-depth interviews were conducted, transcribed verbatim and then analyzed through open and axial coding in order to construct categories for three cases (sites). This was followed by continued thematic analysis to identify underlying conceptual coherence across all cases in order to produce one coherent care coordination model. PARTICIPANTS: Fifty-six purposively sampled patients and 27 case-linked unpaid caregivers. SETTINGS: Three cases from contrasting primary, secondary and tertiary settings within Britain. RESULTS: Coordination is a deliberate cross-cutting action that involves high-quality, caring and well-informed staff, patients and unpaid caregivers who must work in partnership together across health and social care settings. For coordination to occur, it must be adequately resourced with efficient systems and services that communicate. Patients and unpaid caregivers contribute substantially to the coordination of their care, which is sometimes volunteered at a personal cost to them. Coordination is facilitated through flexible and patient-centered care, characterized by accurate and timely information communicated in a way that considers patients' and caregivers' needs, preferences, circumstances and abilities. CONCLUSIONS: Within the midst of advanced progressive illness, coordination is a shared and complex intervention involving relational, structural and information components. Our study is one of the first to extensively examine patients' and caregivers' views about coordination, thus aiding conceptual fidelity. These findings can be used to help avoid oversimplifying a real-world problem, such as care coordination. Avoiding oversimplification can help with the development, evaluation and implementation of real-world coordination interventions for patients and their unpaid caregivers in the future

The potential of peer support to extend the reach of digital health

Abstract Background Peer support groups have proliferated since the 1960s, providing safe, informal environments where peers can share experiences and information. A common model for the group is for those who have progressed further along a care pathway or in dealing with a particular medical condition or psycho-social problem, to encourage those at an earlier stage of recovery. Online support groups now co-exist with face to face models, providing a complementary or alternative resource for those with digital access and competence. As the paradigm of health care has moved towards the incorporation of health promotion, patient empowerment and self-management, peer support has extended to include more focussed activities. In particular peer support is included in a range of behaviour change interventions to promote engagement and adherence. Increasingly these interventions are delivered online. While this aims to extend their reach, it leaves those without digital access disadvantaged in terms of the ability to make use of online health resources.Main text Though peer support has been used to maintain adherence to online programmes, its potential in assisting with access and thus widening participation has remained unknown. We successfully piloted the use of a paid peer supporter to help men without experience of IT to take part in an online intervention involving a prostate specific holistic needs assessment. Lessons were learnt from this innovation in relation to training needs and support for the supporter and around data security, confidentiality and safeguarding. Alternative models of voluntary peer support maybe appropriate, particularly in the implementation phase of an intervention and require exploration. Additionally a specific framework for best practice in relation to Digital Health interventions is needed to guide future development of the role. Conclusion Health services are predicted to increasingly rely on digital technology over the next decade. Research into the impact of these seek to include participants representative of the entire population. Efforts must be made to include those who are currently underrepresented in research such as the elderly and other disadvantaged groups. Innovative research designs involving peer support in a research project may be valuable in addressing the current barriers to participation

Caring for each other : a rapid review of how mutual dependency is challenged by advanced illness

This review explores factors sustaining and threatening couples’ relationships when both have advanced illness. Qualitative studies exploring relationships between two people in a marriage/partnership with advanced illness are included. A total of 12 articles are included. Internal enabling factors, external enabling factors and threatening factors are identified. However, there is limited evidence internationally on factors sustaining these relationships and crisis factors. Little is known about the impact of crises on couples and the process of change from mutual dependency to carer and cared for. The article concludes that shifts by services towards holistic care focused on the couple’s needs are indicated

“Good care” throughout the prostate cancer pathway : perspectives of patients and health professionals

Purpose: Men in follow up for prostate cancer represent the largest proportion of patients with the illness. In the United Kingdom, primary care is increasingly involved in caring for these patients. Little is known however regarding the factors that determine men's evaluation of their care and primary healthcare professionals' perceptions of the care they provide. This study aimed to investigate patient and primary care based health professionals' perspectives of what constitutes ‘good care’ for men with prostate cancer, including limiting or facilitating factors. Method: Semi-structured interviews were conducted with ten patients and eight primary care based healthcare professionals and thematically analysed in collaboration with a patient representative group. Results: Good care was identified by patient participants, with aspects of communication, including information, active participation, sensitivity of approach and context being highlighted. Healthcare professionals also prioritised communication as the basis of good care and recognised the benefits of locally based services. Conclusions: Treatments in prostate and other cancers continue to improve with corresponding increases in survival. To further develop and sustain the good care that patients require to help them cope with diagnosis, treatment and long term adjustment, investment in resources, training and innovative communication systems between patients, generalist and specialist services are required