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Planning and optimising CHAT&PLAN: A conversation-based intervention to promote person-centred care for older people living with multimorbidity

  • Teresa K. Corbett ,

    Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Resources, Writing – original draft, Writing – review & editing

    t.k.corbett@soton.ac.uk, t.k.corbett2@gmail.com

    Affiliation NIHR ARC Wessex, School of Health Sciences, University of Southampton, Highfield, Southampton, United Kingdom

  • Amanda Cummings,

    Roles Conceptualization, Formal analysis, Investigation, Methodology, Visualization, Writing – review & editing

    Affiliation Macmillan Survivorship Research Group, School of Health Sciences, University of Southampton, Southampton, United Kingdom

  • Kellyn Lee,

    Roles Conceptualization, Formal analysis, Methodology, Writing – review & editing

    Affiliation School of Health Sciences, University of Southampton, Highfield, Southampton, United Kingdom

  • Lynn Calman,

    Roles Conceptualization, Methodology, Resources, Writing – review & editing

    Affiliation Macmillan Survivorship Research Group, School of Health Sciences, University of Southampton, Southampton, United Kingdom

  • Vicky Fenerty,

    Roles Data curation, Formal analysis, Methodology, Supervision, Writing – review & editing

    Affiliation University of Southampton Library, University of Southampton, Southampton, United Kingdom

  • Naomi Farrington,

    Roles Conceptualization, Methodology, Resources, Writing – review & editing

    Affiliation University Hospital Southampton & University of Southampton, Southampton, United Kingdom

  • Lucy Lewis,

    Roles Conceptualization, Methodology, Writing – review & editing

    Affiliation Health Education England South East, University Hospital Southampton NHS Foundation Trust and University of Southampton, Otterbourne, Winchester, United Kingdom

  • Alexandra Young,

    Roles Data curation, Formal analysis, Investigation, Methodology, Writing – review & editing

    Affiliation School of Health Sciences, University of Southampton, Highfield, Southampton, United Kingdom

  • Hilary Boddington,

    Roles Conceptualization, Investigation, Writing – review & editing

    Affiliation Wessex Macmillan GP, Wessex Cancer Alliance, Southampton, United Kingdom

  • Theresa Wiseman,

    Roles Conceptualization, Investigation, Writing – review & editing

    Affiliation The Royal Marsden NHS Foundation Trust and University of Southampton, Southampton, United Kingdom

  • Alison Richardson,

    Roles Data curation, Formal analysis, Investigation, Methodology, Resources, Supervision, Writing – review & editing

    Affiliation NIHR ARC Wessex, School of Health Sciences, University of Southampton and University Hospital Southampton NHS Foundation Trust Mailpoint, Southampton General hospital, Southampton, United Kingdom

  • Claire Foster,

    Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Resources, Supervision, Writing – review & editing

    Affiliation Macmillan Survivorship Research Group, School of Health Sciences, University of Southampton, Southampton, United Kingdom

  • Jackie Bridges

    Roles Conceptualization, Data curation, Formal analysis, Funding acquisition, Investigation, Methodology, Project administration, Resources, Supervision, Validation, Writing – review & editing

    Affiliation NIHR ARC Wessex, School of Health Sciences, University of Southampton, Southampton, United Kingdom

Abstract

Background

Older people are more likely to be living with cancer and multiple long-term conditions, but their needs, preferences for treatments, health priorities and lifestyle are often not identified or well-understood. There is a need to move towards a more comprehensive person-centred approach to care that focuses on the cumulative impact of a number of conditions on daily activities and quality of life. This paper describes the intervention planning process for CHAT& PLANTM, a structured conversation intervention to promote personalised care and support self-management in older adults with complex conditions.

Methods

A theory-, evidence- and person-based approach to intervention development was undertaken. The intervention planning and development process included reviewing relevant literature and existing guidelines, developing guiding principles, conducting a behavioural analysis and constructing a logic model. Optimisation of the intervention and its implementation involved qualitative interviews with older adults with multimorbidity (n = 8), family caregivers (n = 2) and healthcare professionals (HCPs) (n = 20). Data were analysed thematically and informed changes to the intervention prototype.

Results

Review findings reflected the importance of HCPs taking a person-centred (rather than disease-centred) approach to their work with older people living with multimorbidity. This approach involves HCPs giving health service users the opportunity to voice their priorities, then using these to underpin the treatment and care plan that follow. Findings from the planning stage indicated that taking a structured approach to interactions between HCPs and health service users would enable elicitation of individual concerns, development of a plan tailored to that individual, negotiation of roles and review of goals as individual priorities change. In the optimisation stage, older adults and HCPs commented on the idea of a structured conversation to promote person-centred care and on its feasibility in practice. The idea of a shared, person-centred approach to care was viewed positively. Concerns were raised about possible extra work for those receiving or delivering care, time and staffing, and risk of creating another “tick-box” exercise for staff. Participants concluded that anyone with the appropriate skills could potentially deliver the intervention, but training was likely to be required to ensure correct utilisation and self-efficacy to deliver to the intervention.

Conclusions

CHAT&PLAN, a structured person-centred conversation guide appears acceptable and appealing to HCPs and older adults with multimorbidity. Further development of the CHAT&PLAN intervention should focus on ensuring that staff are adequately trained and supported to implement the intervention.

Background

By 2040, older people will account for over two-thirds of those living with and beyond cancer (LWBC) [1]. At any age, people with cancer can experience side-effects such as pain, breathlessness, and fatigue, as well as psychological problems including anxiety, depression and loss of confidence [2]. However, older adults are at heightened risk of the side-effects of some cancer-related treatments and often lack the physiological reserves required to effectively recover from acute toxicities [3]. In addition, older people are more likely to have two or more long-term conditions (used in this paper as a definition of multimorbidity). Separately, both cancer and multimorbidity are associated with poorer health-related quality of life (HRQOL) and result in complex health and social care needs [1,48]. Those LWBC have a higher prevalence of multimorbidity than those without cancer [9]. Multimorbidity co-occurring with cancer is associated with reduced physical health and psychological well-being, poorer mental health, and poorer survival compared to those who have no history of cancer [816]. Care is also complicated in this group due the social and contextual factors associated with aging [12], including increased social isolation, frailty, and polypharmacy [1].

Older adults with multimorbidity vary in what they choose to prioritise in terms of their health, as well as in the extent of treatment burden and inconvenience they are willing to accept [13]. However, health service user needs, preferences for treatments, health priorities and lifestyle are often not identified or well-understood [1,10,16]. There is a need to move towards a more comprehensive approach that focuses on the cumulative impact of a number of conditions on daily activities and quality of life [1,8]. Patient-centred care refers to the active engagement of health service users in shared-decision making about their healthcare [9]. The term “person‐centred care” has been used to represent a more holistic approach that does not view a person as simply their symptoms and/or diagnosis [11] and focuses less on the sick-role and more on the individual who lives with a condition, aiming to help the person achieve a meaningful life [14]. Communication is a central feature of person-centred care to appreciate what the care receiver values about their life, and what their preferences and priorities are [12,14]. In addition, personalised care planning (including the core components of preparation, goal setting, action planning and review) promotes an ongoing process to identify and discuss personal needs and goals, and agree and coordinate a plan for how these goals will be met, potentially leading to better health care outcomes [17]. Health and social care support underpinned by a person-centred approach to care should facilitate self-management, enable people to cope with the experience of multiple complex conditions, help them engage with life in the community, and understand how to elicit support from local services. Person-centred care is generally considered as good practice, yet remains poorly defined and implemented [14].

This paper outlines the development of ‘CHAT&PLANTM’, a tool designed to facilitate a person-centred conversations in health and social care. Many of the existing interventions for multimorbidity lack a theoretical framework, with uncertainties about the effectiveness of interventions for people living with multimorbidity [18]. We have therefore drawn on relevant theoretical frameworks (namely Shippee’s cumulative complexity model (CCM) [19] and Burden of Treatment Theory [20]) to inform our understanding of the dynamic context of living with multimorbidity in older age, and ensure relevant factors identified in theory are addressed in the intervention developed.

The ‘CHAT&PLAN’ intervention was developed to minimise health-related work and maximise individuals’ capacity to self-manage multimorbidity. The aim was to build an intervention based on an iterative theory-, evidence- and person-based approach [2123]. In this paper, we seek to provide a clear description of how the intervention was planned and optimised. We describe how findings allowed ‘CHAT&PLAN’ to be shaped by the expectations and preferences of participants, whilst emphasising insights and methods that could be applied in other settings. Outlining the development process of novel interventions helps to minimise ‘research waste’ and replication of interventions unlikely to be feasible or effective [24].

Methods

Structure of the planning and optimisation phases

‘CHAT&PLAN’ was developed according to a theory-, evidence- and person-based approach to intervention development [2527]. The information generated from this method was triangulated to inform ‘guiding principles’ [27] and a logic model outlining the theory underpinning the intervention. The development process involved two iterative phases: planning and optimisation (See Fig 1).

Monthly development meetings were held with a multi-disciplinary team of co-investigators including Patient and Public Involvement (PPI). Three PPI volunteers supported the planning and optimization of the intervention. PPI members’ input helped to ensure methods were ethical and that participation in the study was not too burdensome for older adults and caregivers. We implemented changes based on their feedback, ensuring study and intervention materials were accessible, engaging and persuasive prior to being shared with participants. The wider management team included members with backgrounds in psychology (TC, CF, KL), anthropology (AY), medicine (HB, AC) and nursing (LC, JW, NF, TW, AR, JB, LL), four specializing in oncology nursing (JW, NF, TW, AR) and two specializing in older adult’s healthcare (JB, LL). Draft intervention materials were frequently shared for comment and iteration.

Ethical approvals were gained from the Research Integrity and Governance team, University of Southampton (ref no. 45579) and NHS London—City & East Research Ethics Committee (ref no. 253413).

Planning phase of developing the ‘CHAT&PLAN’ intervention

The ‘Planning’ phase outlines the theory-, evidence- and person-based ‘Guiding Principles’ and logic model developed to underpin intervention development. This involved: an informal scoping review of relevant literature and existing guidelines, an in-depth formal qualitative literature review, development of guiding principles, and the development of a programme theory based on a behavioural analysis and a logic model.

  1. To begin, a rapid scoping review of the literature to gather evidence from a broad range of resources about potential intervention features and important contextual factors. This helped us to develop an overview of the topic area and identify key issues that were important to address. In January 2019, the following databases were used to search for studies published from 2009–2019: Medline; Web of Science; Google Scholar. Citation and snowball searching were used as well as the ‘related articles’ function in databases and expert recommendations. Quantitative and qualitative papers were included to explore topics of interest, including policy guidelines, reports and academic literature.
  2. Secondly, an in-depth formal systematic review and synthesis of qualitative studies was also conducted to identify what older adults living with and beyond cancer and multimorbidity report influences their self-management [28]. Databases were searched between June and July 2018 for primary qualitative research that reported older adults’ perspectives on and experiences of living with cancer and multimorbidity. Further details of the methods employed are reported elsewhere [28].
  3. Thirdly, guiding principles were developed to outline key intervention design objectives. These guiding principles identify user/context-specific behavioural needs and intervention features that address the design objective [27]. These were used to enhance the acceptability of an intervention and, in turn, to improve engagement and effectiveness.
  4. We then developed a programme theory to define how the intervention was expected to work, by specifying the anticipated mechanisms of change involved [29]. A behavioural analysis was used to identify behaviours to be targeted by the ‘CHAT&PLAN’ intervention and any potential barriers and facilitators. In line with Medical Research Council (MRC) guidance [30], we constructed a logic model to illustrate the hypothesised mechanisms of action of the ‘CHAT&PLAN’. This logic model was iteratively designed by the multi-disciplinary study team of co-investigators, with input from our PPI volunteers.

Optimisation phase of developing the ‘CHAT&PLAN’ intervention

The ‘Optimisation’ phase presents qualitative findings about the experiences of older adults with other conditions alongside cancer (n = 8), family caregivers (n = 2) and health care professionals (n = 20), as well as their feedback on the intervention. Participants gave informed written consent to participate in the study.

Participants were asked about the experience of living with complex conditions and concurrent aging to gain insight into how “work-is-done” in practice, and how people with multimorbidity are currently supported to focus on health goals/stay healthy. Participants also reviewed the ‘CHAT&PLAN’ intervention prototype. Semi-structured questions were used to explore what participants liked, disliked and thought should be changed. The interview guide is available as a supplementary file (S1 File).

After interviews were conducted, initial thoughts and ideas were noted down by the interviewers as an early stage of analysis. The data were transcribed verbatim. Data were analysed using thematic analysis to assess participants’ thoughts about the intervention content and inform potential changes. Initial codes were identified and highlighted factors considered pertinent to the design and implementation of the intervention. The generation of initial codes was primarily done by one researcher (TC) with occasional cross-checking to independent coding by a second researcher (AY). Coding was discussed by members of the study team (TC, AY and JB) and developed into themes.

Results

Planning phase of developing the ‘CHAT&PLAN’ intervention

A rapid scoping review of the literature established that older adults LWBC differ in terms of functional status, cognition and comorbidity [31] and many have a number of conditions which affect their cognitive and physical functioning [4,3238]. Older adults with multimorbidity may struggle to access information, emotional and practical support [1,8,14,39,40]. Crucially, the scoping search suggested many older people are likely to have untapped assets and resilience which, if deployed, could help them to better manage their health [32,41]. Health-care professionals often report insufficient knowledge and skills to support older people with complex conditions [42]. Training and education may be required to encourage ‘buy in’ and to facilitate a shared understanding of purpose [43]. NICE guidelines for approaches to care that takes account of multimorbidity focus on how an individual’s health conditions and their treatments interact and how this may impact quality of life (QoL). Guidelines advocate attending to the person's individual needs, preferences for treatments, health priorities, lifestyle and goals. HCPs are encouraged to consider ways to improve QoL by reducing treatment burden, adverse events, unplanned care and fragmentation of care [44]. HCPs and the individual should agree a personalised management plan that incorporates goals and plans for future care and outlines who is responsible for care coordination [44]. Disease and treatment burden should be recognised, but goals, values and priorities should also be identified. These may include lengthening of life, maintenance of independence, taking part in valued activities, preventing specific adverse outcomes or reducing side effects of medicines, and reducing treatment burden [44]. There is a need for assessment of individual difficulties and variation in self-efficacy to self-manage so that support can be tailored appropriately according to level of need [45,46]. Some studies have described a need to enhance communication and establish a means of managing complex, fragmented care, in alignment with health service users’ priorities [46,47].

The systematic review and synthesis of qualitative studies revealed older adults living with cancer and multimorbidity value autonomy and independent living as a key feature of quality of life [28]. Health conditions that had the greatest negative impact on independent living were prioritized. Often, a key driver of engagement with self-management ‘work’ was whether or not the healthcare practices were seen to interfere with QoL and/or aligned with their understanding of their health and symptoms. People were reluctant to burden others in their social network with help seeking. Healthcare services’ role in supporting self-management was considered as peripheral to people’s experience of daily living. Lack of time and difficulties in establishing a rapport with HCPs in clinical consultations interfered with trust being established. More responsive health care that aligns with individual priorities and preferences may result in improved health outcomes for this group. Older adults LWBC are often actively prioritising their own values and autonomy, but these actions may not align with formal service provision or HCP expectations of the patient’s self-management role [28].

Based on findings from the reviews and from our research team, including PPI members, we developed an insight into the experiences of the healthcare providers and recipients who were the target audience for the ‘CHAT&PLAN’ intervention. The guiding principles were continuously and iteratively refined as new information emerged e.g., from the behavioural analysis and qualitative interviews. The finalised ‘CHAT&PLAN’ guiding principles are outlined in Table 1. This table summarises findings from the reviews, which also demonstrates how they were used to develop intervention guiding principles. We link these guiding principles to the aims outlined in the logic model, demonstrating how they informed the intervention development and helped us to identify key context-specific behavioural issues to be addressed.

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Table 1. Guiding principles summarising key intervention design needs and objectives.

https://doi.org/10.1371/journal.pone.0240516.t001

Relevant evidence from scoping reviews, team expertise and qualitative interviews was tabulated, and were then mapped onto existing theory. This allowed clear description of the intervention processes, including the behaviours to be targeted and strategies to deliver these functions. A key aim of the intervention was to reduce the workload of cognitive and practical tasks for older adults with multiple conditions in order to increase their capacity to self-manage their health [20]. Theories of Health Psychology & behaviour change were employed to address the finding from both the rapid scoping review of the literature and synthesis of qualitative studies that psychological factors often shape individuals’ overall response to health-related work, self-management and cumulative complexity. Subjective beliefs about (and attitudes towards) complexity were key drivers of behaviour, often more significant than the influence of objective patient workload and capacity. We drew on a range of psychological and sociological theories as outlined in Table 2.

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Table 2. Outline of theories employed in intervention planning process.

https://doi.org/10.1371/journal.pone.0240516.t002

Once developed, the ‘CHAT&PLAN’ targeted eight core behaviours based on the guiding principles and theoretical analysis (see Fig 2): initial ‘checking in’ with the service user and identifying ‘what matters most’ to them; active listening’; identifying and discussing service user priorities; linking patient priorities to health-related objectives; agreeing a goal; creating an action plan; agreeing responsibilities; negotiating roles and creating a sense of shared-responsibility. We drew on existing evidence relating to behavioural change techniques to identify those techniques most frequently used and appropriate to meeting the aims of the intervention [69,70]. These included identification of current skill set, problem solving, information provision, instruction and demonstration, coping planning, goal-elicitation, action planning, decision making, relapse prevention, and goal reviewing.

The logic model (Fig 3) illustrates the hypothesised mechanisms of action of the ‘CHAT&PLAN’ and outlines the programme theory.

Optimisation phase of developing the ‘CHAT&PLAN’ intervention

Demographic information for each participant can be seen in Table 3. Findings from the interviews informed iterations and modifications of the guiding principles and the behavioural analysis. They also identified required intervention changes. Table 4. provides examples of qualitative interview data that informed the key points raised below. Table 5. provides an overview of changes made, including examples of participant feedback. Fig 4. shows a modified version of the CHAT&PLAN, including recommended prompts and advice suggested by interviewees.

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Table 3. Demographic information of participants in qualitative interviews.

https://doi.org/10.1371/journal.pone.0240516.t003

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Table 5. Overview of the changes made, including examples of participant feedback.

https://doi.org/10.1371/journal.pone.0240516.t005

Some of the key points to emerge from the interviews are outlined below, and supporting quotes can be found in Table 4.

Non‐clinical, shared- approach to care viewed positively, if appropriate for the service-user’s needs and if it does not create extra work for those receiving care or for the HCPs.

A non‐clinical approach focusing on health service users’ priorities was seen as a favourable feature and considered as a way of facilitating holistic care. HCPs and older adults liked the shared-nature of the plan, which was seen as empowering individuals whilst ensuring they were supported. Crucially, most HCPs felt very strongly that this should not create extra work for those receiving care, given the amount of health-related work that is already expected of those with multimorbidity. Conversely, some older adults were concerned that the plan would create additional work for HCPs, reflecting on existing pressures on staff and an increasingly overburdened healthcare service. The use of the tool must be appropriate for the individual’s needs, abilities, and priorities. They noted that it may be confusing and difficult for those with difficulties in cognitive impairment, lower health literacy, higher illness burden or those with more complex issues. HCPs noted that the approach would not work for everyone and some suggested that the CHAT&PLAN is used with those identified as most likely to benefit. HCPs emphasised the importance of how the CHAT&PLAN is discussed with the person receiving care. They should be interested in participating, know why this approach is being used and understand how it might be different from a more traditional consultation.

The structure may help to routinise and formalise practice that may already happen if staff have the support, time, resources and skills to do so.

Participants often liked the structure offered by the CHAT&PLAN, and the acronym, which was considered clear and self-explanatory. HCPs may already engage in person-centred care if they have the support, time, resources and skills to do so, though some noted a lack of a structured approach. Individual differences between health professionals in personality and empathy were also mentioned. Most participants believed that the CHAT&PLAN would be useful to prompt staff to engage in person-centred care and would be particularly helpful for new staff. Some believed the structured approach could help to standardise practice. However, others suggested that a structured approach may distract from the consultation, as it may be difficult to remember the steps.

Concerns related to time and staffing, risk of creating another “tick-box” exercise for staff, and challenges associated with fragmented care.

Time and staffing to accommodate an extra consultation were raised as potential barriers to implementation. HCPs described variation in how existing programmes were delivered as recommended, often due to a lack of available resources. Some warned against creating another “tick-box” for staff, arguing that such exercises often divert attention from meeting immediate care needs. Individuals questioned the added benefit of the CHAT&PLAN approach and how it might link in with existing programmes of work. Many spoke about the issues relating to fragmented care, noting that healthcare often happens in silos and information is often not efficiently transferred across teams. This made it difficult for HCPs to access information pertaining to those receiving care. However, by accessing online healthcare records, some believed that CHAT&PLAN could facilitate integration of care across teams by placing the health service users’ own priorities at the centre.

The tool would work best if it was linked with something that was already happening in practice, preferably outside of the hospital context.

CHAT&PLAN is likely to be more feasible if the consultation is embedded in routine practice, linked in with something that was already happening. It was proposed that CHAT&PLAN be used alongside the development of care plans or treatment summaries. Most agreed that CHAT&PLAN lends itself to multiple points on the care trajectory, but likely to have a different focus at various transition points. However, some preferred the idea of having a conversation as early as possible to gain insight into an individual’s priorities from the outset. Conversely, others thought it would be better placed after treatment, given the self-management focus. Many believed it would be best done outside hospital, perhaps in a general practice setting. Generally, both HCPs and older adults concluded that location and mode of delivery must work for those it was designed to help and therefore should be chosen by participants. HCPs emphasised it should be an ongoing, flexible and fluid intervention, working with the individual as their needs change.

Initial priority should be service-user safety; staff must know limits of their knowledge and when to refer.

It was emphasised that at the outset of any consultation, HCPs must ensure that people are safe and that there are no immediate or acute issues. Staff must know what to look for (potential problems, symptoms or conditions that might be linked, things that might be issues later etc.). It was perceived as key that HCPs know their boundaries and when they should refer to other teams. There was often discussion around relative merits of generalist versus specialist practitioners in working with older adults with multimorbidity. An alternative suggestion was to have the conversation led by a non‐clinician who would link-in with the clinician or medical team. Support workers were mentioned as having many of the skills required to deliver the intervention, but may not have the advanced clinical skills needed to detect acute health needs or potential exacerbations of conditions. Therefore, a support worker-led consultation would need to occur alongside a routine consultation (e.g. after a cancer care review at a GP practice) or be supervised by a clinician for safety.

Anyone with the appropriate skills could potentially deliver the intervention, but training may be required to ensure correct utilisation of the tool and self-efficacy to deliver to the intervention.

Generally, HCPs believed that anyone with the appropriate skills could potentially deliver the intervention. The key was to ensure that they had been trained to optimally utilise the CHAT&PLAN. Training would also help to standardise the way the CHAT&PLAN is used and build clinical confidence and self‐efficacy. Staff should be supported by providing training, rehearsal, feedback, time, space and mentoring. HCPs frequently mentioned that motivational interviewing and health coaching skills would be helpful for the delivery of the intervention. Participants noted that there would be a need to consider people’s understanding of their health and frequently discussed the importance of being able to refer or signpost to other services.

Active listening approaches were emphasised as a key skill by both HCPs and older adults. The majority of HCPs acknowledged it was often challenging to truly listen to what a person wants and to create an open environment for conversation. HCPs discussed individual differences in empathy, and noted that it would take experience to be able to frame the CHAT&PLAN as a conversation and to pick up on clues that the individual may need extra help. HCPs wanted to develop skills to be responsive and maintain a sustained focus on the care-recipient’s priorities, especially in cases where their priorities might conflict with those of the care-recipient. Both HCPs and older adults raised concerns about the perceived open-ended nature of the conversation, stating it may be difficult for some HCPs to have a consultation that was led by health service users. There was concern about opening a “Pandora’s box” of issues that the HCP would not be able to manage and it was deemed important to educate HCPs on how to help an individual to identify key priorities. Participants discussed the challenge of setting realistic, small, achievable goals that are important and meaningful to health service users. Some participants noted that goal setting is quite a novel skill for many HCPs, and one that could be quite difficult for them. Training in goal setting would help HCPs to be able to develop a plan to achieve the goals, as well as managing expectations, goal reviewing, modification and evaluation.

Modifications needed to optimise the feasibility of the intervention.

One of the aims of the study was to identify intervention modifications needed to maximise the success of the intervention. We explored what participants thought should be changed to improve intervention acceptability. Some participants expressed dissatisfaction with some of the terminology used. As an illustrative example, HCPs contended that goal-setting was becoming increasingly common in modern practice. However, there was some confusion amongst older adult participants about the concept of goals. Many of those who had long-term conditions expressed a belief that goals are for those who have a new condition, stating that their only goal was to stay healthy. There was a sense that these individuals would be less likely to engage in a conversation that was pitched as being a “goal-setting exercise”. Therefore we explored other options such as the word “target” or “aims” which were considered more favourably. A key factor in achieving person engagement with the intervention would be how the purpose of CHAT&PLAN was explained to the person receiving care.

Discussion

In this paper we have presented an overview of an evidence-, theory- and person-based development process for an intervention which aims to facilitate person-centred care and in turn, improve QoL in older adults living with multimorbidity. Design and planning were conducted by a multidisciplinary team and informed by theory, policy, guidelines and the findings of a systematic review of qualitative literature. It was refined and further developed with input from older adults, their caregivers and healthcare professionals. We have provided a detailed account of how and why the intervention took its current form, and how it is expected to work. In doing so, we have provided useful and transferable insights into the issues that are likely to be involved in delivering a complex intervention to deliver person-centred care to older adults.

This study provides empirical evidence that a conversation-based intervention to promote person-centred care may be acceptable and engaging for older adults with multimorbidity and healthcare professionals who work with them. To date there has been insufficient application of theory to understand and guide intervention development for care of those with multimorbidity [18]. Use of theory in the development process enabled us to develop an holistic approach to support those with multimorbidity, founded on the priorities and values of the individual, rather than on treating specific health conditions or symptoms [71]. The aim of CHAT&PLAN is to improve quality of life by enhancing patient capacity and self-efficacy to self-manage, as well as reducing treatment burden, adverse events and unplanned or fragmented care. This requires an adaptive approach that enables an individual to address their care needs (that may vary and fluctuate over time) in order to optimise wellbeing [31].

Vermunt et al [32] sought to evaluate studies on the effects of interventions that support collaborative goal setting or health priority setting compared to usual care for elderly people with a chronic health condition or multimorbidity [32]. The authors concluded that collaborative goal setting and/or priority setting is probably best when integrated in complex care interventions. The authors recommended that future research should determine the mix of essential elements in a multifactorial intervention to provide recommendations for daily practice [32]. Interestingly, our qualitative work evidenced discrepancies between older adults’ and HCPs’ interpretations of the meaning of particular health-related terms or language, which may make it difficult to productively engage in collaborative goal setting and/or priority setting. For example, the majority of HCPs thought that the word “goals” was suitable and appropriate for the intervention, demonstrating an increased focus on goal-oriented approaches to care in recent years [15]. However, identification of goals may be more complicated than anticipated. Our findings indicated that older adults were confused about what the term “goals” meant for them, given that they had lived with their conditions for many years and had already adapted their lives to accommodate their conditions. Individuals reported they perceived “goals” as achievement-orientated, or something to be focused on when a new condition was diagnosed. The term “goal” was not perceived as reflecting a desire to maintain health or independence and was rejected by many of the older adults we spoke to. Some research has indicated that individuals with multimorbidity do not naturally share their goals with providers [33]. If those in receipt of care misinterpret the meaning of a question relating to goals (e.g. if they do not think they have any goals) then they may not receive adequate support to help them to meet their ongoing needs. Thus, while goal-setting is likely to be a helpful exercise, care must be taken in how the topic is approached and explained, so that appropriate goals or aims can be developed (e.g. explaining that a goal can be a short-term aim, or can be something small that the individual would like to change or maintain). The use of appropriate, meaningful language is important to ensuring engagement in healthcare. To reflect the feedback of older adult participants, we changed the terms used in the CHAT&PLAN tool. HCPs must be trained specifically in how to clarify the concept of goal-setting as a means of helping people to think about how they would like their future to look and how this might be made possible. It is key that HCPs demonstrate an understanding of the context of living with long-term conditions and the expertise held by the individuals living with those conditions [33].

Findings from a trial of a patient-centered intervention (the 3D intervention) was recently published [34]. The authors concluded that effectiveness of the intervention could be improved by further training of practice staff, promoting greater consistency and generalist training to promote confidence to support a variety of longer-term conditions. The study included 33 general practices (1546 patients) and found the intervention to improve management of multimorbidity did not result in a meaningful effect on patients' quality of life [34]. However, the study authors of the 3D intervention concluded that effectiveness of the intervention could be improved by further training of practice staff, promoting greater consistency and generalist training to promote confidence to support a variety of longer-term conditions. In particular, post-hoc process evaluations recommended further training for goal-setting as a key concept in patient-centred care, something our study identified. Another recommendation was that the intervention should have had less of a medical focus, and instead emphasize meeting social care needs through social prescribing and signposting to services within the community. In our extensive qualitative development work, one of our key findings related to the skillset and confidence of the healthcare professionals, and the potential for variations in practice between different HCPs. Similarly, the HCPs that we interviewed, also stated that they would like to develop skills such as goal-setting and signposting. Thus, our qualitative and iterative development process has enabled us to identify many potential implementation issues before the intervention is tested further, and in turn reduced research waste by identifying modifiable barriers to implementation [35].

The need to train healthcare professionals has been identified in previous reviews. For example, a Cochrane review reported on the benefits of personalised care planning, highlighting improvements in indicators of physical and psychological health status, and capability to self‐manage conditions [17]. However, the authors concluded that it would probably require training for health professionals in how to elicit patients' goals and priorities, suggesting that investment in relevant training, support and system redesign could lead to better outcomes for people with long‐term conditions [17]. Another Cochrane review [36] evaluated communication skills training (CST) in changing behaviour of healthcare professionals (HCPs) working in cancer care. After the intervention HCPs were more likely to show empathy and to use open questions, and less likely to provide only facts. However, there was no improvement in communication skills, including eliciting concerns, clarifying and/or summarising information, and negotiation [36]. Drawing on our findings and existing evidence, prior to testing the efficacy of the CHAT&PLAN intervention on health service user outcomes, we must first be sure that HCPs are trained to effectively deliver and facilitate the intervention. This would include shared decision-making about goals with service users, as well as how to set and prioritise goals. This is likely to require more effective communication and coordination between HCPs [32,37].

Complex, novel interventions are notoriously difficult to integrate into practice [13], yet are more likely to be accepted when people are involved in the decisions and activities that affect them [38]. Our findings complement previous research indicating some clinicians are uncomfortable with the change in the relationship and power dynamic [39], or may perceive a collaborative approach as time-consuming and less willing to adopt such an approach [40]. Further, our work supports findings that health care professionals believe the care they provide is already person-centred, despite extensive evidence suggesting that this is often not the case [39,72]. The next step is to develop learning resources to underpin the development of skills to utilise the CHAT&PLAN in practice. This resource would help HCPs to establish how best to integrate the tool into practice.

Strengths and limitations

We had initially aimed to recruit more participants in the patient groups. However, despite contacting a number of potentially eligible individuals, many chose not to participate. Unfortunately, we only recruited 2 caregivers. This is because we aimed to recruit caregivers identified by the older adult participants. The other participants did not identify a caregiver to participate in the study; four of these participants lived alone.

Difficulties in recruitment may be due to the nature of the conditions we wished to study and the busy health-related workload experienced by those with ill-health [73]. As well as health-status, other factors that could impact recruitment may relate to the ethnicity of participants. All of the participants who chose to participate in this study were white, which may be a reflection of the ethnic diversity in the local area (77.7% of residents recorded their ethnicity as White British in the 2011 Census [41]). However, efforts should be made to gain an insight into the experiences of those of different backgrounds, and to use different methods of approach to encourage participation in research [42]. Moreover, we did not ask specific questions about the socio-economic status of participants, yet it was evident that some were affluent as indicated in conversations about private healthcare and paying for support such as gardeners or cleaners. However, other participants did address financial challenges relating to paying for parking at the hospital and purchasing items such as sanitary pads.

It is worth noting that we did gain an insight into experiences of living with multimorbidity by drawing on the findings of previous research in our qualitative review and synthesis. The findings of the synthesis reflected the views of more than 960 patients and 52 family caregivers. The findings of the review were largely echoed by participants in our study. Further, while it was important to explore the acceptability of the tool in patient groups, our primary focus was on healthcare providers as they were the ones that would use the intervention. These individuals offered a more detailed insight into how the CHAT&PLAN would be implemented into routine practice.

CHAT&PLAN was originally designed for use in settings for older people who have cancer alongside multimorbidity. However, as the research progressed our findings suggested it was transferable for use by teams in other populations. Our qualitative review of the literature found that health conditions perceived to have the greatest negative impact on independent living were prioritised by health service users, and so, for many individuals, previous experiences of cancer could assume a low priority. Similarly, in our qualitative study, many participants questioned the limited focus of the study on older adults with cancer and other conditions, arguing the tool could potentially be beneficial for anyone with multimorbidity. Therefore, in future studies, we will test the efficacy of the tool in a broader population.

Conclusion

This paper provides a detailed description of a methodological approach to intervention planning and optimisation for a person-based intervention.

The study has elicited barriers and facilitators to implementation of the intervention and behaviour change [22]. We will use these findings in planning future research to test the effectiveness of the intervention to improve QoL in those with multimorbidity. In particular, this work demonstrated a need for training to enhance HCP self-efficacy and develop skills required by HCPs to optimally use CHAT&PLAN in practice. Thus, our next step is to systematically develop and test a learning resource to accompany introduction of CHAT&PLAN. This study has provided evidence that a person-centred intervention appears acceptable by healthcare professionals and appealing to older adults.

Supporting information

S1 File. MOCs interview schedule- caregivers- version 1 23102018.

https://doi.org/10.1371/journal.pone.0240516.s001

(DOCX)

S2 File. MOCs interview schedule- patients- version 1 23102018.

https://doi.org/10.1371/journal.pone.0240516.s002

(DOCX)

S3 File. MOCs interview schedule-HSCP—version 1 23102018.

https://doi.org/10.1371/journal.pone.0240516.s003

(DOCX)

References

  1. 1. Yarnall A.J., et al., New horizons in multimorbidity in older adults. Age and ageing, 2017. 46(6): p. 882–888. pmid:28985248
  2. 2. Chambers S.K., et al., Trajectories of quality of life, life satisfaction, and psychological adjustment after prostate cancer. Psycho‐oncology, 2017. 26(10): p. 1576–1585. pmid:27943512
  3. 3. Corbett T. and Bridges J., Multimorbidity in older adults living with and beyond cancer. Current opinion in supportive and palliative care, 2019. 13(3): p. 220–224. pmid:31157655
  4. 4. Poitras M.-E., et al., What are the effective elements in patient-centered and multimorbidity care? A scoping review. BMC health services research, 2018. 18(1): p. 446. pmid:29898713
  5. 5. Salisbury C., et al., Epidemiology and impact of multimorbidity in primary care: a retrospective cohort study. Br J Gen Pract, 2011. 61(582): p. e12–e21. pmid:21401985
  6. 6. Wolff J.L., Starfield B., and Anderson G., Prevalence, expenditures, and complications of multiple chronic conditions in the elderly. Archives of internal medicine, 2002. 162(20): p. 2269–2276. pmid:12418941
  7. 7. Fortin M., et al., Relationship between multimorbidity and health-related quality of life of patients in primary care. Quality of Life Research, 2006. 15(1): p. 83–91. pmid:16411033
  8. 8. Tyack Z., et al., Predictors of health-related quality of life in people with a complex chronic disease including multimorbidity: a longitudinal cohort study. Quality of Life Research, 2016. 25(10): p. 2579–2592. pmid:27048497
  9. 9. Barry M.J. and Edgman-Levitan S., Shared decision making—the pinnacle of patient-centered care. New England Journal of Medicine, 2012. 366(9): p. 780–781. pmid:22375967
  10. 10. Taskforce I.C., Achieving world-class cancer outcomes: a strategy for England 2015–2020. 2015, Independent Cancer Taskforce London.
  11. 11. Santana M.J., et al., How to practice person‐centred care: A conceptual framework. Health Expectations, 2018. 21(2): p. 429–440. pmid:29151269
  12. 12. Richards T., Coulter A., and Wicks P., Time to deliver patient centred care. 2015, British Medical Journal Publishing Group.
  13. 13. Nolte E., Implementing person centred approaches. 2017, British Medical Journal Publishing Group.
  14. 14. Håkansson J.E., et al., " Same same or different?" A review of reviews of person-centered and patient-centered care. Patient education and counseling, 2019. 102(1): p. 3–11. pmid:30201221
  15. 15. England N., The NHS Long Term Plan. 2019.
  16. 16. Bridges J. and Simcock R., Meeting the workforce challenges for older people living with Cancer. International journal of nursing studies, 2017. 65: p. A1–A2. pmid:27884390
  17. 17. Coulter A., et al., Personalised care planning for adults with chronic or long‐term health conditions. Cochrane Database of Systematic Reviews, 2015(3).
  18. 18. Smith S.M., et al., Managing patients with multimorbidity: systematic review of interventions in primary care and community settings. Bmj, 2012. 345: p. e5205. pmid:22945950
  19. 19. Shippee N.D., et al., Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. Journal of clinical epidemiology, 2012. 65(10): p. 1041–1051. pmid:22910536
  20. 20. May C.R., et al., Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness. BMC health services research, 2014. 14(1): p. 281.
  21. 21. Hoffmann T.C., et al., Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ: British Medical Journal, 2014. 348: p. g1687. pmid:24609605
  22. 22. Yardley L., et al., The person-based approach to intervention development: application to digital health-related behavior change interventions. Journal of medical Internet research, 2015. 17(1).
  23. 23. Craig P., et al., Developing and evaluating complex interventions: The new medical research council guidance. International Journal of Nursing Studies, 2013. 50(5): p. 587–592. pmid:23159157
  24. 24. O’Cathain A., et al., Taxonomy of approaches to developing interventions to improve health: a systematic methods overview. Pilot and feasibility studies, 2019. 5(1): p. 41.
  25. 25. Craig P., et al., Developing and evaluating complex interventions: the new Medical Research Council guidance. 2013.
  26. 26. Kok G. and Shaalma H., Using Theory in Psychological Interventions, in Health Psychology in Practice, Michie S. and Abraham C., Editors. 2004, Blackwell: Oxford. p. 203–9.
  27. 27. Yardley L., et al., The person-based approach to intervention development: application to digital health-related behavior change interventions. Journal of medical Internet research, 2015. 17(1): p. e30. pmid:25639757
  28. 28. Corbett T., et al., Self-management in older people living with cancer and multi-morbidity: A systematic review and synthesis of qualitative studies. Psycho-Oncology. n/a(n/a).
  29. 29. Funnell S.C. and Rogers P.J., Purposeful program theory: Effective use of theories of change and logic models. Vol. 31. 2011: John Wiley & Sons.
  30. 30. Moore G.F., et al., Process evaluation of complex interventions: Medical Research Council guidance. BMJ: British Medical Journal, 2015. 350: p. h1258. pmid:25791983
  31. 31. Sturmberg J.P., et al., ‘Multimorbidity’as the manifestation of network disturbances. Journal of evaluation in clinical practice, 2017. 23(1): p. 199–208. pmid:27421249
  32. 32. Vermunt N.P., et al., Collaborative goal setting with elderly patients with chronic disease or multimorbidity: a systematic review. BMC geriatrics, 2017. 17(1): p. 167. pmid:28760149
  33. 33. Boeckxstaens P., et al., A qualitative interpretation of challenges associated with helping patients with multiple chronic diseases identify their goals. Journal of comorbidity, 2016. 6(2): p. 120–126. pmid:29090183
  34. 34. Salisbury C., et al., Management of multimorbidity using a patient-centred care model: a pragmatic cluster-randomised trial of the 3D approach. The Lancet, 2018.
  35. 35. Glasziou P. and Chalmers I., Research waste is still a scandal—an essay by Paul Glasziou and Iain Chalmers. Bmj, 2018. 363: p. k4645.
  36. 36. Moore P.M., et al., Communication skills training for healthcare professionals working with people who have cancer. Cochrane Database of Systematic Reviews, 2018(7).
  37. 37. Harris M., Dennis S., and Pillay M., Multimorbidity: negotiating priorities and making progress. Australian Family Physician, 2013. 42(12): p. 850. pmid:24324984
  38. 38. Braithwaite J., Changing how we think about healthcare improvement. BMJ, 2018. 361: p. k2014. pmid:29773537
  39. 39. Eaton S., Roberts S., and Turner B., Delivering person centred care in long term conditions. Bmj, 2015. 350: p. h181. pmid:25670186
  40. 40. Advancing Care, Advancing Years: Improving Cancer Treatment And Care For An Ageing Population, C.R. UK, Editor. 2018.
  41. 41. Observatory, S.D. Ethnicity and Language. 2019 09 August 2019 July 2019]; Available from: https://data.southampton.gov.uk/population/ethnicity-language/#:~:text=Resources-,Ethnicity,has%20become%20more%20ethnically%20diverse.
  42. 42. Rockliffe L., et al., It’s hard to reach the “hard-to-reach”: the challenges of recruiting people who do not access preventative healthcare services into interview studies. International journal of qualitative studies on health and well-being, 2018. 13(1): p. 1479582. pmid:29912650
  43. 43. Joseph-Williams N., Elwyn G., and Edwards A., Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient education and counseling, 2014. 94(3): p. 291–309. pmid:24305642
  44. 44. Hunt K.J. and May C.R., Managing expectations: cognitive authority and experienced control in complex healthcare processes. BMC health services research, 2017. 17(1): p. 459. pmid:28679376
  45. 45. Simcock R., Improving cancer research in older adults. The UK National Cancer Research Institute initiative. Journal of geriatric oncology, 2019.
  46. 46. Cavers D., et al., Living with and beyond cancer with comorbid illness: a qualitative systematic review and evidence synthesis. Journal of Cancer Survivorship, 2019: p. 1–12. pmid:30357721
  47. 47. Milroy M.J., Outlining the Crisis in Cancer Care, in Quality Cancer Care. 2018, Springer. p. 1–12.
  48. 48. Pergolotti M., et al., Activities, function, and health-related quality of life (HRQOL) of older adults with cancer. Journal of geriatric oncology, 2017. 8(4): p. 249–254. pmid:28285980
  49. 49. Shrestha S., Shrestha S., and Khanal S., Polypharmacy in elderly cancer patients: Challenges and the way clinical pharmacists can contribute in resource‐limited settings. Aging Medicine, 2019.
  50. 50. Williams G.R., et al., Comorbidity in older adults with cancer. Journal of geriatric oncology, 2016. 7(4): p. 249–257. pmid:26725537
  51. 51. Götze H., et al., Comorbid conditions and health-related quality of life in long-term cancer survivors—associations with demographic and medical characteristics. Journal of Cancer Survivorship, 2018. 12(5): p. 712–720. pmid:30097854
  52. 52. Stairmand J., et al., The impact of multimorbidity on people’s lives: a cross-sectional survey. Ethnicity, 2018. 117: p. 50.
  53. 53. Blaum C., et al., White Paper A Research Agenda to Support Patient Priorities Care for Adults with Multiple Chronic Conditions. 2017.
  54. 54. Leppin A.L., Montori V.M., and Gionfriddo M.R. Minimally disruptive medicine: a pragmatically comprehensive model for delivering care to patients with multiple chronic conditions. in Healthcare. 2015. Multidisciplinary Digital Publishing Institute.
  55. 55. Naik A.D., et al., Health values and treatment goals of older, multimorbid adults facing life‐threatening illness. Journal of the American Geriatrics Society, 2016. 64(3): p. 625–631. pmid:27000335
  56. 56. Kennedy A., Rogers A., and Bower P., Support for self care for patients with chronic disease. BMJ: British Medical Journal, 2007. 335(7627): p. 968. pmid:17991978
  57. 57. The Recovery Package: Sharing good practice M.C. Support, Editor. 2013.
  58. 58. Da Silva D., Helping people share decision making a review of evidence considering whether shared decision making is worthwhile. London: The Health Foundation, 2012.
  59. 59. Ahmad N., et al., Person-centred care: from ideas to action. 2014: Health Foundation.
  60. 60. Blaum Caroline, et al., White Paper A Research Agenda to Support Patient Priorities Care for Adults with Multiple Chronic Conditions. Patient-Centered Outcomes Research Institute 2017.
  61. 61. Boehmer K.R., et al., Does the chronic care model meet the emerging needs of people living with multimorbidity? A systematic review and thematic synthesis. PloS one, 2018. 13(2): p. e0190852. pmid:29420543
  62. 62. May C.R., et al., Experiences of long-term life-limiting conditions among patients and carers: what can we learn from a meta-review of systematic reviews of qualitative studies of chronic heart failure, chronic obstructive pulmonary disease and chronic kidney disease? BMJ open, 2016. 6(10): p. e011694. pmid:27707824
  63. 63. Deci E.L. and Ryan R.M., The" what" and" why" of goal pursuits: Human needs and the self-determination of behavior. Psychological inquiry, 2000. 11(4): p. 227–268.
  64. 64. Vansteenkiste M. and Sheldon K.M., There's nothing more practical than a good theory: Integrating motivational interviewing and self‐determination theory. British journal of clinical psychology, 2006. 45(1): p. 63–82.
  65. 65. Miller W.R. and Rollnick S., Talking oneself into change: Motivational interviewing, stages of change, and therapeutic process. Journal of Cognitive Psychotherapy, 2004. 18(4): p. 299.
  66. 66. Stone D.N., Deci E.L., and Ryan R.M., Beyond talk: Creating autonomous motivation through self-determination theory. Journal of General Management, 2009. 34(3): p. 75–91.
  67. 67. Locke E.A., Latham G.P., and Erez M., The determinants of goal commitment. Academy of management review, 1988. 13(1): p. 23–39.
  68. 68. Gollwitzer P.M., Implementation intentions: strong effects of simple plans. American psychologist, 1999. 54(7): p. 493.
  69. 69. Michie S., et al., The Behavior Change Technique Taxonomy (v1) of 93 Hierarchically Clustered Techniques: Building an International Consensus for the Reporting of Behavior Change Interventions. Annals of Behavioral Medicine, 2013. 46(1): p. 81–95. pmid:23512568
  70. 70. Michie S., Atkins L., and West R., The behaviour change wheel. A guide to designing interventions. 1st ed. Great Britain: Silverback Publishing, 2014: p. 1003–1010.
  71. 71. Déruaz-Luyet A., et al., Multimorbidity: can general practitioners identify the health conditions most important to their patients? Results from a national cross-sectional study in Switzerland. BMC family practice, 2018. 19(1): p. 66. pmid:29776442
  72. 72. Foundation H., Person-centred care made simple: what everyone should know about person-centred care. 2014: Health Foundation.
  73. 73. Sygna K., Johansen S., and Ruland C.M., Recruitment challenges in clinical research including cancer patients and caregivers. Trials, 2015. 16(1): p. 428.