The capability approach in rehabilitation: developing capability care

Abstract

Purpose

To develop a multidisciplinary outpatient rehabilitation intervention for people with neuromuscular diseases (NMD) based on the capability approach: capability care for persons with NMD.

Materials and methods

The development process is described using a framework of actions for intervention development. It has been an iterative process consisting of a design phase based on theoretical insights and project group discussions, and a refine phase involving input from relevant stakeholders.

Results

Multidisciplinary efforts have resulted in the development of capability care for rehabilitation of persons with NMD. It can focus both on facilitating and achieving functionings (beings and doings), as well as looking for alternative functionings that fulfil the same underlying value, thereby contributing to the persons’ well-being. To facilitate a conversation on broader aspects that impact on well-being, persons with NMD receive a preparation letter and healthcare professionals are provided with guiding questions and practical tools to use.

Conclusions

We have shown that it is possible to develop a healthcare intervention based on the capability approach. We hope that rehabilitation professionals will be encouraged to use capability care and that other medical professionals will be inspired to develop capability care in their respective fields.

Registration

Registered at trialregister.nl NL8946

IMPLICATIONS FOR REHABILITATION

• The capability approach can be used for development of healthcare interventions.

• Capability care in rehabilitation focuses on realising what is of real value to the person.

• The capability approach and the ICF are complementary and can both be used in rehabilitation.

Keywords:

• Capability care
• capability approach
• complex intervention development
• neuromuscular diseases
• well-being

Introduction

Within the last decades, healthcare is making a shift towards a broader perspective on health. Especially for people with chronic diseases, a focus on well-being instead of a disease-oriented type of care is observed. There is a need to shift the attention from “what is the matter with the patient” to “what matters to the patient” [1]. Various efforts have been made to achieve this shift towards a focus on well-being, e.g., positive health [2], lifeworld-led healthcare [3], patient-centred care [4] and goal-oriented care [1,5] and the engagement of people with lived experience [6].

In parallel, there has been a growing interest in the practical and theoretical significance of the capability approach for healthcare. The capability approach has been developed by Nobel Prize Laureate Amartya Sen and offers a theoretical framework for studying well-being by analysing and evaluating an individual’s ability to achieve valuable functionings in life [7,8]. Its central idea is that well-being is a result of a persons’ capabilities, the set of opportunities available to this person that he or she can choose from to realise valuable functionings. Functionings, here, are defined as the beings and doings of people they have reason to value (e.g., working, resting, exercising, being part of a family, belonging to a community). A person’s capabilities are determined by the resources at someone’s disposal and personal, social and environmental characteristics (conversion factors) (see Figure 1). According to the capability approach, the larger the number of capabilities, the more options someone has to choose from to realise valuable functionings and the higher this person’s well-being will be.

Figure 1. Schematic illustration of the theoretical framework of the capability approach (adapted from Robeyns [7]).

The capability approach is a framework that, depending on its purpose, can be used to develop a range of capability applications in different fields, including healthcare [9–12]. Especially for chronic (progressive) diseases such as neuromuscular diseases (NMD) where, as no curative treatment is available, the focus is on achieving and maintaining well-being, the capability approach might bring added value to the standard of care in rehabilitation. Myotonic dystrophy type 1 (DM1) and facioscapulohumeral muscular dystrophy (FSHD) are among the most prevalent inherited NMD [13,14]. Both diseases are characterized by slow progressive muscle weakness leading to impairments in functions, limitations in activities and participation restrictions [15,16]. In addition, DM1 is a multisystem disorder leading to cardiac and gastrointestinal involvement, cataract and cognitive deficits [15,17]. Both diseases show a highly variable disease course and severity among patients, and thus ask for an individualized approach for rehabilitation treatment. Using the capability approach not only offers a broad perspective on well-being, but also provides direction for an analysis of factors (resources, conversion factors) that impact on a person’s well-being.

However, due to the broad and abstract nature of the capability approach, operationalisation in practice is challenging [18] and requires further development or specification for each specific goal or use of the capability approach. For (empirical) applications the term capability application is used [9]. This implies that specifications and choices are needed to develop a capability application for rehabilitation of persons with NMD. To the best of our knowledge, no clinical healthcare intervention has yet been developed based on the capability approach.

The Rehabilitation and Capability care in NeuroMuscular Diseases (ReCap-NMD) study [19] is the first study that explicitly developed, implemented and evaluated a healthcare intervention for patients with NMD based on the capability approach: capability care. The aim of this article is to describe the process that we have adopted in developing capability care, using existing guidance for developing complex healthcare interventions [20–22].

Materials and methods

Protocol and registration

The development of a multidisciplinary outpatient rehabilitation intervention based on the capability approach is part of the ReCap-NMD study [19]. The study protocol has been approved by the medical ethical reviewing committee CMO Regio Arnhem-Nijmegen (NL72794.091.20) and was registered at trialregister.nl (NL8946) on 12 October 2020. All participants in the ReCap-NMD study provided written informed consent.

The aim of the ReCap-NMD study is to develop, implement and evaluate a multidisciplinary outpatient rehabilitation intervention for persons with NMD based on the capability approach and uses a before-after study design. The choice for a before-after study design has been made both for evaluation purposes (comparing the intervention group with the usual care group), and for being able to use data collected from the usual care group for the development of capability care. Figure 2 shows an overview of the study design; a more extensive description can be found in the ReCap-NMD study protocol [19].

Figure 2. Flowchart of the ReCap-NMD study including the steps used for development of capability care.

Approach

For the development of capability care we used a theory- and evidence-based approach, adapting the steps of the framework of actions for intervention development of O’Cathain et al. [22] to fit our study design. Table 1 provides an overview of the steps taken and a summary of the result of each step. A full description of each step can be found below.

Table 1. Overview of steps during the development of capability care, using the framework for intervention development [22].

Phase	Actions according to framework for intervention development	Development steps towards capability care
Design	Bring together a team	ReCap-NMD research team consisting of researchers with various backgrounds was formed.
	Plan the process	Development of capability care took place in an iterative process combining theoretical exploration and involvement of relevant stakeholders.
	Understand context	Capability care has been developed for persons with FSHD and DM1 that visit the multidisciplinary team at the outpatient clinic of the department of Rehabilitation, Radboudumc for one day of analysis and advice. Also see Figure 3.
	Review published evidence & draw on existing theories	Using the capability approach in addition to the currently used ICF adds a broader perspective on dimensions of well-being. The focus is on capabilities and individual choice in realising functionings. To operationalise the element of choice, the capability approach has been supplemented with an additional theory on dimensions of value by Finnis [23].
	Articulate programme theory	Capability care focuses on the functionings as ends that are of value to the person with NMD. A capability analysis can focus both on facilitating and achieving functionings, as well as looking for alternative functionings that fulfil the same underlying value, thereby contributing to the persons’ well-being.
Refine	Involve stakeholders & Undertake primary data collection	Various stakeholders have been involved during the development of capability care. These were 1) persons with NMD receiving usual care; 2) professional experts; 3) people with lived experience of NMD; and 4) the healthcare professionals providing capability care. Input from stakeholders was used in an iterative process.
	Attend to future implementation	Implementation in the ReCap-NMD study consisted of a training session, training on the job and the appointment of ambassadors. Capability care could also be implemented in a variety of healthcare settings that aim to contribute to a person’s well-being.
	End of development phase	Capability care is developed and will be implemented as part of the ReCap-NMD study.

Which steps belong to the design phase (based on theory) and refine phase (by involving stakeholders) can be found in the first column.

DM1: myotonic dystrophy type 1; FSHD: facioscapulohumeral muscular dystrophy; ICF: International Classification of Disability, Functioning and Health; NMD: neuromuscular disease(s); ReCap-NMD: Rehabilitation and Capability care in Neuromuscular diseases.

Designing capability care

Bring together a team

The research team for the ReCap-NMD study consists of (1) primary researchers with respectively a clinical rehabilitation (EP) and a methodological (BB) background and (2) rehabilitation (EC, JG) and neurology (BE) clinicians and methodologists (GW, WO). During the development process, the primary researchers (EP and BB) were continuously involved. Additionally, regular discussions with the full research team were organised.

Plan the process

In the study protocol we described that to develop capability care, a combination of theoretical exploration, discussions within the research team, conversations with other experts from the capability field, and data collected from the usual care group would be used [19]. The development process has been an iterative process. From the start of the study, the design phase (a specific creative part of the development process [22]) was based on theoretical insights and research team discussions. The refine phase (optimize the intervention based on feedback on an early version or prototype [22]) started with interviews with participants that had received usual care; this interview phase was planned for a maximum of 6 months depending on the moment data-saturation would be reached. Then, the following 3 months was planned to further refine the intervention by involving other stakeholders (professional experts, people with lived experience, healthcare professionals).

Understand context

In the ReCap-NMD study, capability care has been developed for persons with slowly progressive NMD, FSHD and DM1, that visit the outpatient clinic of the department of Rehabilitation of the Radboud university medical center. As the Radboud university medical center is an expert center for both FSHD and DM1, persons from throughout the Netherlands have appointments with the multidisciplinary rehabilitation team during 1 day of “analysis and advice” (see Figure 3). Depending on their diagnosis and personal circumstances, it is determined beforehand with which healthcare professionals they have consultations during this day. They always have an appointment with the rehabilitation physician and with one, several or all of the following healthcare professionals: nurse practitioner, physical therapist, occupational therapist, speech and language therapist and/or dietician. After the individual consultations, the multidisciplinary team discusses their findings to provide a rehabilitation advice, which is communicated and discussed with the person with NMD during an additional appointment with the physician, to make a shared decision on the next steps. What is changed in capability care is the focus of the conversations between the person with NMD and the healthcare professionals, as well as the analysis and advice by the multidisciplinary rehabilitation team, which are conducted, discussed and formulated from a capability perspective.

Figure 3. Flowchart of the usual care and capability care pathway for the person with NMD. The person with NMD is visualized with the icon of a person, which shows the journey where this person is present during the consultations. The person with NMD is not present during the team meeting.

Review published evidence & draw on existing theories

Developing a capability application for rehabilitation could help both health care professionals and persons with NMD to identify, analyse and reflect upon what really matters to them and discuss ways of realizing those valuable functionings. However, as the capability approach is an open and underspecified framework, it needs supplementation from additional theories [9]. When developing capability care, rehabilitation based on the capability approach, we did not aim to replace the current rehabilitation perspective based on the International Classification of Functioning, Disability and Health (ICF) framework, but to use them complementary. The ICF framework is based on a biopsychosocial perspective and although it recognizes environmental and personal factors, it has been criticized for the central place that the medical perspective takes in the ICF scheme [24]. Nevertheless, the ICF and the capability approach share several common aspects [18,25] which facilitates the use of the capability approach in rehabilitation. Activities and participation in the ICF resemble functionings in the capability approach. Health condition, body functions and structures, environmental and personal factors in the ICF are the resources and conversion factors in the capability approach and are explanatory for the realisation of capabilities and functionings. What is added by the capability approach is a broader perspective on dimensions of well-being; it does not limit its view to the impairment or disabling condition [26]. It also takes into account the opportunities someone has and the role of individual choice in realizing functionings from a set of capabilities [26]. To facilitate implementation of the capability approach in rehabilitation, we chose to operationalize the element of choice in capability care. Therefore, we have supplemented the capability approach with an additional theory: the seven dimensions of value, developed by John Finnis, which has been used previously to assess capabilities in evaluation of interventions outside healthcare [23] and within healthcare [27]. This theory states that all functionings that people (choose to) do have a final reason for why it matters to them, which identifies the underlying value, and can be in one or more of these seven categories: life, knowledge, play, sociability/friendship, aesthetic experience, practical reasonableness and religion/transcendence (see Table 2). These dimensions of value are universal and apply to all humans at all times [28].

Table 2. Dimensions of value (developed by John Finnis and used previously in applications of the capability approach [23]).

Dimension of value	Description
Life	Every aspect of life which is necessary to sustain life and feel comfortable or at ease with oneself. It includes physical and mental health and freedom from injury and suffering.
Knowledge	Activities pursued for collecting formal and informal knowledge. E.g., education, courses, magazines, documentaries.
Play	Activities that have intrinsic value, they are enjoyed for its own sake and/or help to relax. E.g., sports, games, crafts, playing music.
Sociability/friendship	Having valuable human relationships and participating in social activities.
Aesthetic experience	Experiencing beauty, natural or man-made, by the spectator or creator.
Practical reasonableness	Being able to use knowledge and skills to choose one’s actions and lifestyle.
Religion/transcendence	Experiencing meaning in life. It includes religion, but also being part of a community or club, and contributing to society for example by working (paid or voluntary). It is about the experience of being part of something larger or belonging to a community.

The descriptions as used in capability care are presented (based on the descriptions by Finnis).

Articulate programme theory

Using the capability approach and the dimensions of value in addition to the ICF shifts the focus to the real opportunities someone has (capabilities), the factors influencing these opportunities (resources and conversion factors) and the choice someone makes to realize certain functionings (beings and doings) from a set of capabilities, because they are of value to this person (see Figure 1).

To develop a capability application, specifications need to be made about (1) focusing on capabilities or functionings, (2) how to select relevant capabilities and (3) whether to focus on means or ends [7,9]. For capability care we selected to focus on functionings as ends, and focus on functionings that each individual values important (and not use pre-defined lists of what should be of importance), for a number of reasons. First of all, the capability approach states that an analysis should start from the ends rather than the means, since ends are what ultimately matter for well-being. A further capability analysis, however, is needed to analyse factors impacting on these ends and therefore focuses on the means; these are the resources, conversion factors and the role of choice [9]. Second, the distinction between functionings and capabilities is between the realized and those effectively possible; capabilities are freedoms or options from which one can choose to realise a functioning [7]. Starting with the focus on functionings relates to current practice in rehabilitation: a person with NMD usually has a question about a certain functioning that he or she is not satisfied with. Due to the progression of the disease it might become more difficult to realise this functioning or the persons foresees this for the future. Additionally, the focus on functionings also has a pragmatic reason: the healthcare professionals do not have the time to explore all possible capabilities, and we could also question whether this is relevant for an individual with NMD. Third, the focus is on the functionings that are selected by the person with NMD because these are of value to him or her. It is not relevant to use pre-defined lists of capabilities or functionings, as in rehabilitation the aim is not to explore all possible functionings or capabilities, but the focus is only on some of these functionings that the person with NMD finds important. Starting with the end of achieving or maintaining (realizing) a certain functioning, capability care focuses on the analysis on how to achieve this end: what are the means needed to achieve this?

Another key element in the capability approach is choice. From a set of capabilities, someone can choose what they value most to realise as a functioning [7]. Especially for persons with slowly progressive NMD with limited energy, realizing only the functionings that have value and making explicit choices therein is of paramount importance. In capability care the seven dimensions of value (see Table 2) are used to explore the reasons for choices that people make. Exploring these underlying values can be a tool to facilitate making explicit choices. Furthermore, if a capability analysis shows that realising a certain functioning is no longer possible (the capability is no longer present), exploring the underlying value of this lost functioning can lead to a conversation about alternative ways to fulfil this underlying value by realising an alternative functioning. Ultimately, the functioning is not of importance to someone because of the functioning itself, but because of the underlying value it fulfils. According to Finnis, for someone to flourish, one needs to fulfil all seven dimensions of value [28]. Therefore, in capability care it needs to be considered whether the person with NMD can realise functionings in all seven dimensions of value.

One of the strengths of rehabilitation is the multidisciplinary approach. Each professional will discuss the functionings and underlying values that relate most to their own expertise (e.g., the physical therapist will discuss sports; the speech and language therapist will discuss eating and drinking; and the occupational therapist will focus on daily activities and participation in general). Bringing this information together in a team meeting enables a comprehensive analysis of resources and conversion factors that facilitate or impede the capabilities and functionings, whether the person with NMD can realise the functionings that are of value to him or her, and whether the person with NMD can realise functionings in all seven dimensions of value. This analysis leads to a conclusion on whether the person with NMD realises what matters most and thus achieves the highest possible well-being. When this is not achieved, the multidisciplinary team will formulate an advice for the person with NMD on how to achieve this and how the rehabilitation team or other (healthcare) professionals may contribute to their well-being.

Summarizing, capability care could thus focus both on facilitating and achieving functionings, as well as looking for alternative functionings that fulfil the same underlying value, thereby contributing to the persons’ well-being.

Refining capability care

Involve stakeholders & undertake primary data collection

In developing capability care various stakeholders have been involved and data was collected from these stakeholders. The findings from each group of stakeholders were used in an iterative process, where subsequent groups of stakeholders could respond to previous findings (see timeline in Figure 4). The stakeholders that have been involved during the development of capability care are (1) persons with NMD receiving usual care; (2) professional experts; (3) persons with lived experience of NMD (but not included in the study population); and (4) the healthcare professionals working at the outpatient clinic for patients with FSHD or DM1 at the department of Rehabilitation of the Radboud university medical center.

Figure 4. Timeline of involvement of the stakeholders.

An overview of data collected for evaluation purposes can be found in the ReCap-NMD study protocol [19] and consists of both qualitative (interviews, audio recordings) and quantitative data (client-centred outcome measure, questionnaires).

Persons with NMD receiving usual care

Persons with NMD (and their partners) participating in the usual care group of the ReCap-NMD study have been interviewed 6 months after their consultations with the multidisciplinary rehabilitation team. In total 29 participants have been included in the usual care group, out of which 12 participants and 5 partners have been interviewed (see Table 3) over a three-month period (see Figure 4). Interviews were held until data saturation was reached.

Table 3. Overview of interviewed persons and partners; a random selection has been further analysed by two or three independent researchers.

Diagnosis	Sex	Age (years)	Interview partner	Selected for further analysis	Independent researchers performing analysis
DM1	Female	51	no	yes	2
DM1	Female	28	no	no	–
DM1	Female	55	no	no	–
DM1	Male	53	yes	yes	3
FSHD	Female	69	yes	yes	2
FSHD	Male	44	no	no	–
FSHD	Male	54	yes	yes	2
FSHD	Female	49	yes	no	–
FSHD	Female	56	no	no	–
FSHD	Female	35	yes	no	–
FSHD	Male	30	no	yes	2
FSHD	Female	58	no	yes	3

DM1: myotonic dystrophy type 1; FSHD: facioscapulohumeral muscular dystrophy.

The aim of the interview was to identify relevant (changes in) capabilities, resources and conversion factors; and to discuss the impact of rehabilitation on these changes. To operationalize these capabilities, we followed the method used by Alkire [23], discussing capabilities on the seven dimensions of value: life, knowledge, play, sociability/friendship, aesthetic experience, practical reasonableness and religion/transcendence. The interview was semi-structured and focused on three main questions: (1) What are the capabilities of the person with NMD on each of these dimensions? (2) Have there been any changes in these dimensions? and (3) Can the changes be attributed to the rehabilitation? Interviews with the partners focused on their impression of the person with NMD’s capabilities and changes therein. The full interview guide can be found in Supplementary Appendix 1.

All interviews have been transcribed (intelligent, non-verbatim) addressing the research questions. Next, each interview has been summarized following a deductive approach using a standard format. The format addressed (1) the capabilities of participants on the seven dimensions of value, (2) changes in each of these dimensions and (3) whether changes could be attributed to rehabilitation. After discussing the summaries in the research team, a random selection of interviews (six participant and three partner interviews) have been selected for further exploration (see Table 3). Using each interview summary, two or three researchers (BB, NB, RK) (depending on timing; we started with three for calibration and continued with two researchers after having discussed two interviews) have independently described the person’s well-being in capability terminology (resources, conversion factors, functionings) and thought about possible interventions to enlarge or retain the person’s capabilities. To determine whether there were aspects of well-being that were missing or underexposed in the usual care, one researcher (RK) compared the interviews and interview summaries with the audio recordings of the consultations with the health care professionals and with the medical records (the notes of these consultations). This analysis showed five theme’s that needed more attention during rehabilitation, when looking from a capability perspective:

• Future perspective: How to cope with uncertainties related to the progression of the disease, being able to continue work (paid, volunteer or at home), a dream or wish about a large activity (such as traveling far away), the impact on their relationship when the partner has different ideas about the future, or pragmatic choices about living and using assistive devices.

• Autonomy: persons with NMD sometimes find this hard to realize even though it is of importance to them. They struggle with the wish to be independent and autonomous when they depend on others for physical care or tasks that need to be done.

• Meaning: persons with NMD would like to discuss which activities can provide them meaning in life; and how to make choices between activities when you have limited energy.

• Personal conversion factors: especially factors focusing on someone’s character, coping style or norms could be highlighted more.

• Social conversion factors: more attention is needed for the larger social environment such as colleagues, neighbours, or acquaintances that do not understand the situation or comment on the situation.

Professional experts

Thirteen professionals in the fields of rehabilitation, neurology, broader healthcare, and the capability approach were invited to participate in an online focus group. Twelve professionals were willing to participate, however only ten professionals were able to participate (on the planned date). The goal of this focus group was to discuss (1) the results of the interviews with participants from the usual care group and (2) ideas on practical implementation of capability care. The focus group was audio-recorded, participants provided verbal consent. A summary of the focus group was made by the researchers leading the focus group (EP and BB) based on the two goals and sub questions attributing to these goals.

What emerged from this focus group was that the five identified themes that needed more attention were recognized as relevant for persons with NMD but also for persons with a wider range of chronic progressive disorders. It was discussed that the theme “meaning” has a relationship with functionings in the capability approach, as a person would only choose to perform functionings that have meaning to him or her. The theme autonomy is related to choice in the capability approach, and it was confirmed that underlying values determine the choices someone makes. However, choice can also be influenced by habits, routines or norms. Furthermore it was discussed that by assessing what is of value to a person, we can prevent unnecessary treatment or aids.

With respect to practical implementation, professionals thought that it is important that not only the healthcare professionals make a shift in perspective, but that persons with NMD will also need to make this shift to discuss their well-being from a broader perspective. They need to be prepared that their consultations can have a broader focus and that they can discuss non-medical aspects related to their situation. This can be done by sending an information letter and to discuss it at the start of the appointment. Some other important findings were that healthcare professionals will need to embrace the capability perspective in their thinking and attitude (and not treat it as a checklist), they need sufficient freedom to implement this within their own conversation style and they need reminders that help them during their consultations. It was advised to appoint ambassadors for capability care; these need to be healthcare professionals that embrace the capability mindset and might naturally already include this in their consultations. These ambassadors can support the full rehabilitation team during the implementation.

Persons with lived experience of NMD

Through the Dutch patients association for NMD (Spierziekten Nederland) [29], we were able to invite persons with lived experience of NMD (that were not included as participants in the study) to participate in online focus groups. The aim was to organize one focus group for persons living with FSHD and one focus group for persons living with DM1. Due to practical reasons (timing and a lack of participants, see also Figure 4) only one focus group has taken place with ten participants living with FSHD and one partner. The patients association coordinated the organisation of the focus group and provided two focus group leaders. The aim was to discuss (1) whether persons with NMD would like rehabilitation to focus on the five identified themes (based on analysis of usual care and the focus group with experts); (2) whether they missed any themes, and (3) what would help them to discuss these themes with their healthcare professionals. The focus group started with all participants for a general discussion and then split in two sub-groups for an in depth discussion; closure of the focus group was with all participants. The focus group was audio-recorded, for which participants provided verbal consent. A summary of the focus group was made by the researchers present during the focus group (EP and BB) based on the three aims of the focus group.

The results of this focus group showed that the five identified themes were recognized as important by the persons with lived experience. However, they were not always aware that these are themes that can be discussed during their rehabilitation appointments. They agreed that sending a preparation letter could help persons with NMD to learn that there is space and time to discuss topics that are not directly related to their health condition (such as muscle weakness) but do have an influence on their well-being (such as social relationships). Additionally, they thought it is the responsibility of the healthcare professional to invite them to discuss broader aspects of well-being, preferably by mentioning this at the start of the conversation. No additional themes were identified during the focus group.

Healthcare professionals

Training was provided by the primary researchers (EP and BB) to healthcare professionals to implement capability care in their consultations. The first training session (for groups 1 and 2, see Table 4) included a discussion about practical issues and tools needed for implementation and therefore contributed to the development of capability care.

Table 4. Number of healthcare professionals per profession that received the initial capability care training.

	Group 1	Group 2	Group 3	Individual training	Total
Rehabilitation physician	1	1			2
Neurologist	1				1
Physician assistant		1			1
Nurse practitioner	1		1		2
Physical therapist	2	2	2		6
Occupational therapist	1	3	2	1	7
Speech and language therapist	1	2			3
Dietician	1	1			2
Total	8	10	5	1	24

Values in bold are used to make the total numbers stand out more in this table.

All healthcare professionals working at the outpatient clinic for patients with FSHD or DM1 at the department of Rehabilitation of the Radboud university medical center were trained (see Table 4). This included the permanent team members and the “back-up” team members (e.g., when the permanent team member was absent due to holiday). The group of professionals was split in two; the first group consisted of 8 professionals, the second group of 10 professionals. Due to practical reasons (illness, holidays, change in health care team) a third group consisting of 5 professionals was trained after the first participant was included in the capability care group. One new professional was trained individually before she joined the team.

The training took 3 h and consisted of theoretical explanation about the capability approach, the development of capability care based on the data as described above, practicing with capability care using a role-play, and a discussion about tools that would be helpful for the professionals to implement capability care in their consultations with persons with NMD.

During this training, healthcare professionals raised two main concerns regarding implementation. Their first concern was about whether they would have sufficient time during their consultations to focus on broader aspects of well-being and the underlying values of a person’s functionings. The second concern was that if all healthcare professionals, in their separate consultations, focused on all seven dimensions of value it could lead to the experience of persons with NMD feeling like repeating information on several occasions during the day. To address both concerns we decided on a pragmatic approach where we assumed that every healthcare professional discusses those dimensions that are most important from their perspective and expertise, and that given the multidisciplinary nature of the team, comprehensive information on all dimensions would be synthesized during the team meeting. However, this approach did not fully address the time concern, especially for the professionals where physical examination and testing is part of their consultation (e.g., physical therapist).

Furthermore, healthcare professionals confirmed that they needed reminders and practical tools to implement capability care. They suggested a visual representation of the capability approach and the dimensions of value, examples of questions they could use during their consultation, a form or tool to analyse a functioning from a capability perspective (to use with or without the person with NMD) and reminders in the formats used to make notes in the electronic health record. They also highlighted the importance of on the job training and feedback (also see below in “attend to future implementation”).

Attend to future implementation

After the initial training session, healthcare professionals received “on the job training.” This consisted of feedback by the primary researchers on their consultations (by joining the consultations of non-research participants) and continued during the inclusion of research participants (by providing feedback based on the audio recordings of the consultations and joining the multidisciplinary team meeting). Furthermore, some of the healthcare professionals were appointed as ambassadors for capability care; their role was to support the implementation process and to provide the research team with feedback on the implementation in clinical practice. A process analysis on the implementation will be performed and published separately.

Although in the current study we implemented capability care for persons with slowly progressive NMD (FSHD and DM1) we foresee that capability care could be implemented in different settings. Rehabilitation has already made a shift towards a more biopsychosocial perspective by using the ICF framework. Depending on setting and patient diagnosis (e.g., acute versus chronic care), the perspective might be somewhere on the spectrum ranging from a biomedical orientation to an orientation focused on well-being. Depending on the current position on this spectrum, using the capability approach might bring a smaller or larger shift towards well-being.

End of development phase

In the ReCap-NMD study, the development phase has ended with the implementation of capability care at the outpatient clinic of the department of Rehabilitation, and the participants included in the study that received capability care. A capability care handbook (including practical tools) and training sessions for the healthcare professionals have been developed. A summarized description of the content of capability care, that is explained in more detail in the handbook and during training sessions, can be found in the next paragraphs (see “Results: Capability care”).

Results: capability care

In the next paragraphs we describe what the capability care intervention actually looks like. We first describe the intervention and then elaborate on the application with a clinical example. In describing the intervention, we will focus on the different steps of the care pathway.

Preparation of the person with NMD

To prepare persons with NMD for conversations about broader aspects of well-being during their day of appointments for “analysis and advice,” a preparation letter is sent to them by post. This letter (see Supplementary Appendix 2) explains that there is a broad range of aspects impacting on well-being and that there is room to discuss these aspects. They are provided with some examples of these broader aspects of well-being and are asked to prepare a list of five topics that they would like to discuss during their appointments.

Individual consultations

In the individual consultations, the healthcare professionals have the space to apply capability care from their own professional perspective. The focus of the individual consultation in capability care is on discussing what is of real value for the person with NMD and thus is important for his or her well-being.

At the start of a capability care consultation, the healthcare professional invites the person with NMD to discuss broader aspects that impact on well-being and provides some examples. The healthcare professional then asks for the preparation letter and the topics that the person with NMD would like to discuss, which can be supplemented with topics that the healthcare professional would like to discuss.

The conversation then focuses on the functionings and especially those functionings that relate to the professional expertise of the healthcare professional. These functionings could be one of the prepared topics, but it could also be that a conversation about one of the prepared topics leads to a conversation about other functionings that are important to the person with NMD. The healthcare professional analyses the factors (resources, conversion factors) that facilitate or impede the realisation of this functioning and discusses the underlying values of these functionings and the choices someone makes. Keeping the seven dimensions of value (see Table 2) in mind makes it easier for the healthcare professional to discover and discuss what is of value to a person with NMD.

During the consultation the healthcare professional actively discusses the five identified themes (future perspective, autonomy, meaning, personal conversion factors, social conversion factors) that need additional attention. All these themes relate to elements of the capability approach, some more explicitly (personal and social conversion factors), whereas others relate to multiple elements of the capability model (e.g., conversations about future perspective, autonomy and meaning could be conducted from the perspective of choice and underlying values).

To guide their consultations, healthcare professionals can use the following three questions:

1. What resources and conversion factors facilitate or impede the realization of this functioning?

2. Why is the functioning so important that the person chooses to perform this particular functioning (from a large set of capabilities)?

3. What if realizing the functioning is no longer available to this person due to progression of the disease (or other changes)? How can this person then still realise something that is of value and contributes to his or her well-being?

At the end of the consultation, the healthcare professional will focus on how their professional contribution can help the person with NMD in realising their values in the current or an alternative functioning.

Multidisciplinary team meeting

After the person with NMD’s visit to the outpatient clinic, the healthcare professionals have a multidisciplinary team meeting to discuss their analysis and formulate an advice for this person. Applying capability care to this team meeting involves an analysis of resources and conversion factors that facilitate or impede the capabilities and functionings, and discussing whether the person with NMD can realise the functionings that are of real value to him or her. Can he or she realise functionings in all seven dimensions of value? Does he or she really realise what matters most and thus achieve the highest possible well-being?

After analysing and discussing the situation from a capability perspective, the team can discuss possible interventions that would contribute to the person’s well-being. The interventions can focus on resources (e.g., using a mobility aid), conversion factors (e.g., advice on how to discuss the situation with colleagues/social environment) or choice (guidance in choices to make; exploring the underlying values to make choices) with the goal of realizing functionings that are of value. After the team meeting, the rehabilitation physician has an appointment with the person with NMD to discuss the advice and possible interventions and a shared decision is made on further treatment or referral.

Practical tools

To facilitate the implementation of capability care, several practical tools have been developed. These tools range from a list of questions that can be used to guide the conversation, forms to analyse activities and values of persons with NMD (see Supplementary Appendix 3), a visual representation of the capability model and the dimensions of value (Figure 5), to reminders in the formats that are used to make notes in the electronic health record. These tools can be used when preparing the appointment, during the consultation, and at the multidisciplinary team meeting.

Figure 5. Visual representation of the capability model and the dimensions of value, developed for use in capability care.

Application in clinical practice

For a better understanding of how capability care can be applied in clinical practice, an example is given below. Note that the example focuses on the analysis of only one functioning.

Clinical example

A female with NMD has the capability of transportation and chooses to use this capability to visit the zoo with her grandchildren (see Figure 6). She visits the rehabilitation team with the question of how to maintain the functioning of visiting the zoo. She notices that travelling to the zoo is taking more and more energy and foresees that this will not be possible any more in the future.

Figure 6. The capability care model applied to a situation where a person chooses to use her capability of transportation to achieve the functioning of visiting the zoo with her grandchildren. Using the visual representation of this model helps the healthcare team to analyse the situation from a capability perspective.

The rehabilitation team can use three questions (as described above) to gather information and analyse the situation:

1. What resources and conversion factors facilitate or impede the realization of this functioning? She has some resources available like a wheelchair and a car; muscle weakness inhibits her from walking longer distances (personal conversion factor); her husband provides assistance by pushing the wheelchair and lifting it into/out of the car (social conversion factor) and the zoo is wheelchair accessible which facilitates a visit (environmental conversion factor). The conversion factors that impede a visit to the zoo are limited energy levels (personal conversion factor) and travel distance to the zoo (environmental conversion factor). Another limiting factor might be the type of wheelchair that she uses (resource); this wheelchair is not comfortable and does not adequately support her posture, which costs a lot of energy.

2. Why is the functioning so important that the person chooses to perform this particular functioning (from a large set of capabilities)? To her, spending time with family is important (sociability/friendship), she is interested in learning about animal behaviour (knowledge), she likes to contribute to raising her grandchildren (practical reasonableness) and she likes to make fun with her grandchildren (play). She makes the explicit choice to spend her energy on visiting the zoo instead of going for grocery shopping; as visiting the zoo fulfils more values to her.

3. What if realizing the functioning is no longer available to this person due to progression of the disease (or other changes)? How can this person then still realise something that is of value and contributes to his or her well-being? The rehabilitation team could help her find alternative functionings, such that she can still realise her values.

Based on an analysis of the information collected by raising these questions, what could the advice be? Are there intervention options? Can this person save energy by using a different wheelchair, choose to limit the time visiting the zoo, choose a zoo closer to home to visit, etc? Can she choose to spend all her energy of the day on the zoo visit and for example ask her partner for help with making breakfast, lunch or dinner? Does she want to spend all her energy on the zoo visit; or can she make a choice to realize her values in an alternative way? For example, she could look at an alternative activity with her grandchildren at home or closer to home (sociability/friendship, practical reasonableness, play) and read or watch a nature documentary (knowledge) at a different time. The advice could be to have additional occupational therapy appointments to help the person make more explicit choices and to help her applying for a different wheelchair.

Real-life complexity

Obviously this example is a simplified version of a real-life situation. In reality the situation would be more complex, with additional factors facilitating or impeding on the possibility of realizing a functioning. In the visualization, the arrows point one way to direct the healthcare professionals in the direction of factors that impact on capabilities and functionings. However, in real life, factors might interact with each other. For example, your coping style and your character will influence the choices that you make. Or when you make the choice of spending a lot of energy on visiting the zoo, it might result in physical complaints such as pain occurring the next day. And what if your partner would make different choices than you would yourself; how does this impact on the relationship?

Additionally, to add to the complexity, a person with NMD usually has questions about multiple functionings. Functionings might have an influence on each other; or persons might need to choose which capabilities they value most and thus which functionings to realize. Especially for persons with NMD, who often experience limited energy, choosing which functionings to realize is of utmost importance.

Added value of using capability care

By using capability care, the analysis of a person’s situation is performed from a broader perspective. It changes the focus to what is of real value to the respective person. For example, visiting the zoo might seem futile to some of us, but for this person the zoo visit fulfills a number of values that are important to her. Analyzing the situation in a systematic way, using the capability care model, points the healthcare professionals into directions that can help this person to enhance her well-being.

Finally, it is important to realize that providing capability care is not “filling out a tool or model” but comprises a shift in the way of thinking, including the ability to guide consultations and analyze information from a capability perspective.

Discussion

The aim of this article is to describe how we have developed capability care: a rehabilitation intervention based on the capability approach. As we were the first to develop a capability application for clinical healthcare, we had no examples and thus the specifications we made might also have disadvantages. The specifications, strengths and limitations of the development process, and future directions are discussed below.

Specifications made during development

To be able to develop a capability application, specifications needed to be made. We selected to focus on functionings as ends, and focus on functionings that each individual values important (and not use pre-determined lists of what should be of importance). As this approach is in line with current practice in rehabilitation, it facilitates the conversation about functionings and simplifies the implementation of capability care in practice. However, a disadvantage may be that starting a consultation from a similar viewpoint in both usual and capability care makes shifting the focus of the conversation to a capability perspective even more challenging for the healthcare professionals, making them fall back into existing routines and habits.

Although we have followed Sen’s capability approach by leaving the selection of relevant capabilities to the users [7,9] (in our case the persons with NMD), we have provided the healthcare professionals with guidance on how to discuss choices (choosing a specific functioning from a range of capabilities) by using the seven dimensions of value [23]. Using a pre-defined list of capabilities, such as Nussbaum proposes [7,9], would not be relevant as the aim of rehabilitation is not to explore all possible capabilities (freedoms and opportunities), but to help persons to choose and realise functionings that are of value to them. The dimensions of value have been used previously in the application of the capability approach [23] and they provide direction for exploring the reasons for choices a person makes. This makes a conversation possible about how to realise these values and which functionings healthcare professionals should focus on. According to Finnis, for someone to flourish, one needs to fulfil all seven dimensions of value [28]. Ideally, capability care would thus focus on all seven dimensions. However, based on input from the healthcare team, we chose for a pragmatic approach where we assumed that all important dimensions would be discussed by the appropriate healthcare professional, and that given the multidisciplinary nature of the team, comprehensive information on all dimensions would be synthesized during the team meeting. Preliminary feedback from the healthcare team shows that using the dimensions of value does facilitate the conversation about the choices someone makes. However, not all dimensions are always discussed. The process analysis will provide us with further information on how the healthcare team has used the dimensions of value in practice.

Furthermore, during the development process it became clear that both the healthcare professionals and the persons with NMD needed a change in perspective from usual care to capability care. Unfortunately, due to the design of the study, it was not possible to train the participants (i.e., they were blinded for treatment group). To start a shift in mindset, we sent the participants a letter prior to their appointments requesting them to prepare topics to discuss, and trained the healthcare professionals to actively mention examples of broader aspects of well-being that the person with NMD can discuss during the consultations. However, an interesting question remains whether it is possible to train persons with NMD in capability care and what effect that would have.

Strengths and limitations

The development process has been an iterative process using a design phase based on theoretical insights and project group discussions, as well as a refine phase involving a variety of stakeholders. A strength of this approach is the iterative process, where based on new insights and stakeholder input, capability care was further designed and refined during each step. Another strength is the variety of backgrounds within the research team (clinical and methodological) and the variety of stakeholders involved: persons with NMD receiving usual care, persons with lived experience of NMD not participating in the study, professional experts with various backgrounds and the healthcare professionals from the multidisciplinary team.

Unfortunately, we were not able to organise a focus group with persons living with DM1, which is a limitation of the study. The patients association that helped us with organising the focus groups with persons with NMD has tried to find sufficient participants and we have been in touch with them regularly throughout the process. However, they could not find sufficient participants in time for the development process. Having input from persons with DM1 might have had an added value in developing capability care, as persons with DM1 can have cognitive problems that impact on their well-being. This might also have been one of the reasons why it was hard to get in touch with these persons for a focus group. Furthermore, in hindsight we should have involved healthcare professionals at an earlier stage. Their input has been very valuable and if we had involved them earlier, we could have made some pragmatic choices earlier in the development process. Our advice would be to involve ambassadors, a selection of the healthcare professionals, at an early stage.

Another limitation is the context of the present study. The Radboud university medical center is an expert center for both FSHD and DM1. Persons with NMD visit the outpatient clinic for a day of “analysis and advice.” If they need further treatment, they are referred to a regional rehabilitation center or to primary care closer to their home. The question is whether it is possible to apply capability care only during one day; and whether the effect of capability care would be larger when rehabilitation treatment is provided for a longer period of time. However, providing analysis and advice from a capability perspective might also lead to a different focus and advice when a patient is referred to local or regional healthcare providers for further treatment. Another limitation regarding context is that the Radboud university medical center is situated in the Netherlands, an European country with a westernised and individualised healthcare system. The capability approach has been criticised for being too individualistic and not paying sufficient attention to groups, social structures and social norms, however, there are also arguments against this critique [9,30]. Meanwhile, some authors embrace the capability approach for developing a framework that is less individualistic and focused on the well-being of communities [31]. Nevertheless, our developed intervention is targeted towards the persons with NMD visiting our clinic and transferring this intervention to a less individualised healthcare setting may require (major) adaptations.

Future directions

In the ReCap-NMD study capability care was implemented at the outpatient clinic of the department of Rehabilitation of the Radboud university medical center. An evaluation of effectiveness of the capability care intervention and a process evaluation of the intervention and its implementation is underway and will provide us with more insight into the added value of the capability approach for rehabilitation in our context (i.e., how large the shift is on the spectrum ranging from a biomedical to a well-being perspective). This analysis will be guided by the new Medical Research Council framework for developing and evaluating complex interventions [20,21] and will be published separately.

Although the current capability care intervention has been developed for persons with slowly progressive NMD, it can be applied to a number of healthcare settings where the aim is to enhance a person’s well-being. It might be especially applicable for people with chronic progressive diseases, where the focus is on managing a life while having a chronic disease. However, capability care is not exclusive for these healthcare settings and might be applicable in other settings as well, given that there is already a trend in healthcare to consider treatment goals broader than clinical outcomes (e.g., well-being, goal-oriented care, positive health) [1,2,5,32]. Depending on the context and target population of the intervention, the currently developed capability care might be refined or revised with minor adaptations or might be used as an inspiration for the development of another intervention based on the capability approach.

Conclusion

The aim of this article was to describe the development of capability care. We have shown that it is possible to develop a healthcare intervention based on the capability approach: capability care. It has been developed for multidisciplinary outpatient rehabilitation of persons with slowly progressive NMD. In our opinion the developed capability care can be used as an inspiration to explore capabilities, functionings, values and choices in a diversity of healthcare settings that aim to contribute to a person’s well-being, such as in rehabilitation. Further research on the effectiveness and process evaluation of the developed capability care is ongoing.

Acknowlegdements

We would like to thank our research assistants Nina de Bakker (NB) and Jana Zajec and student Rosanne Krakers (RK) supporting with data collection and analysis. We would also like to thank Ilse Karnebeek, nurse practitioner, for her involvement in participant recruitment. Finally, we would like to thank all stakeholders involved, especially the persons with NMD who participated in the study or participated in a focus group, and Spierziekten Nederland for their help in organising these focus groups. Several authors of this publication are members of the Radboudumc Neuromuscular Center (Radboud-NMD), Netherlands Neuromuscular Center (NL-NMD) and European Reference Network for rare neuromuscular diseases (EURO-NMD).

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Prinses Beatrix Spierfonds under Grant W.OK18-08.